The Waiting Room

Colorectal Cancer Awareness Month: An Interview with Stephen Rowley (Cancer Survivor / Patient Advisor) – Part 2

For this episode of Karger’s The Waiting Room Podcast on Colorectal Cancer Awareness Month in March, we spoke with Stephen Rowley. He is a colorectal cancer survivor, and currently serves as Patient Advisor at Digestive Cancers Europe. Stephen also helps to organize cancer rehabilitation services and founded the national Bowel Cancer Support Group UK. Furthermore, apart from having played a role in the development of the internet and internet security, he is an interdisciplinary scientist, active musician, visual artist and keen sailor.

In our interview we focus on the aspects of prevention and screening, stigmatization, and cancer rehabilitation regarding colorectal cancer.

This is the second part of our two-part special on colorectal cancer. You can find the first part here.

Note: The statements and opinions contained in this podcast are solely those of the speaker.

Podcast Interview

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Transcript

During the answer to my first question you mentioned your treatment regimen. Do you know of any new treatment modalities or approaches that are currently being implemented or which are on the horizon?

Yes, there’s always a lot going on. Colorectal cancer doesn’t get the attention that breast cancer gets. I mean, when you look at the difference in research expenditure on breast cancer, it’s many times any other cancer or all the other cancers put together. But, you know, colon cancer is the second biggest cancer killer in the UK. And it’s an area of research and of interest to pharmaceutical companies and research organizations. So, there is a lot of research going on all the time. And some of these are coming through as treatments.

Just recently there’s been the results of a trial which showed that for many colon cancers, it would be better to treat with the chemotherapy before the surgery. Traditionally, you have surgery, recover from that and then you have the chemotherapy. They saw better outcomes by having the chemotherapy first, because from point of diagnosis to your surgery, which might be a month, six weeks later, and then the recovery period, you might be talking about three months before you start chemotherapy, which if a small amount has escaped, not visible on the CT scan or anything like that, but it’s escaped, is already working in your liver or somewhere like that, then it’s had that time to grow three months.

Whereas if you go straight in with chemotherapy and reduce the risk of any escaped material before the surgery, you have better outcomes. But that said, the downside of that is that there will be many people who didn’t need chemotherapy who were then overtreated, and overtreatment is a big issue. You know, I had 12 cycles of FOLFOX. Who knows if the first 6 trial cycles did the job and the rest of the 6 just gave me the debilitating side effects.

But there are areas where we know that the treatments aren’t so effective. So, particularly with some biomarkers like KRAS and BRAF, these biomarkers are to do with genetic mutations in the genome of the patient. They reduce their ability to deal with cancer within their own cells, so they reduce the cell’s own cancer immunity systems, and they’ve been stubbornly hard to address in terms of treatments. But now the immunotherapy treatments, together with combined therapies, immune- and chemotherapy, are proving very effective, and significant changes have happened in rectal cancer. One particular mode, one particular type of rectal cancer, they’re getting 100% complete response by delivering this particular combination, and it completely destroys the cancer. No need for surgery; highly effective treatment.

And so that gives us hope that there’s many other immunotherapies coming down the line. Drug companies are busy at all that, and that’s changing the picture rapidly. There are still other, significant portions of the population who have biomarkers mutations which are not really showing any response. Fine if you are a low stage 3; the chemotherapy will probably deal with it. But if you are stage 4, with those biomarkers, there’s very little evidence that the chemotherapies will be effective.

I see. And which role can cancer rehabilitation play also based on your own experience after the treatment?

Well, there is a story [laughs]. So, after my treatment, I wasn’t offered any rehabilitation or anything and “Just get on and recover”. And it was slow, and one of the things I’ve loved in my life is sailing. And late in the summer, my brother took me for a sailing trip on a yacht, and we sailed along one of our favorite bits of the coast, the south coast of England. A sunny day, and I really enjoyed, there, leaning, looking out, at the rail with my hand on the tiller and I was just happy. Perfect weather. And I was on the tiller for about an hour, sitting in the same position. And at the end of the day, my shoulder hurt, and a week later it still hurt. And two months later, no sign of any improvement. So, I went to the physiotherapist and the physiotherapist: “Why aren’t you on the cancer rehabilitation course?” And I said: “Nobody told me about it”, and basically nobody told me about it because nobody at the hospital knew about it. So I got myself referred on to it and went along, and I was the only person in. I had a rehabilitation instructor and me one-on-one for about two months before anybody else turned up.

So, I helped organize to get them organized to make this rehabilitation program visible on the Internet so that the health professionals could find it, and then we could promote it to health professionals, and patients would find it and self-refer. There’s no reason why they need to go through a referral process. And then that helped to expand the program. And that class I go to now regularly has about 30 people going to it weekly. It’s a weekly circuit. If you go to the gym you might be familiar with circuits. Well, these are circuits designed for rehabilitation, and the instructors are trained through a program called CanRehab. So that saved me, really, because what I hadn’t realized is that a significant impact of chemotherapy is cachexia.

Now, cachexia is muscle loss, and you lose muscle fibers basically because certain chemotherapies affect the, it’s called peripheral neuropathy, and it kills the nerve endings. Most people recognize this through tingling in the fingers and reduced sensitivity to touch, and that’s your sensory fibers, but it also affects the motor fibers as well. Your muscles are basically, if they don’t get a signal, that fiber fades away and you lose muscle. And that’s what happened to my shoulder, that I was doing an ordinary job that I would have done the year before without any problem, that I was doing it with only half the muscle and strained those muscles.

So, what’s been shown is that in terms of rehabilitation, the most important thing is resistance exercises to improve your remaining muscle fibers so that you can get them healthier, stronger and help take up the load to replace the ones that have been lost. You can’t grow new fibers. You can just optimize the ones you’ve got. So, and then COVID came and that wiped out the program, really. A few ones locally continued on Zoom, but a lot of them disappeared. And now we’re in the stage of rebuilding that. And, of course, all the funding went away as well. So, now we’re looking for ways of making it self-funding and the like.

I believe everybody who’s been diagnosed with cancer should have access to rehabilitation because it’s not just about cachexia. You might not have cachexia, but chemotherapy or even just the surgery has an effect on your whole system, and you need to rebuild confidence as much as anything. Getting out there and physically being more confident, quite apart from the other significant effect, is that a cancer rehabilitation class is a social event and you’re with other people who get it, who understand. And that can be an amazing thing for anybody anyway in that situation. So, this helps your mental health as well as your physical health.

I suspect there’s quite a bit of loneliness attached to such a diagnosis apart from being supported by your family. But getting together and meeting, well, equal-minded or equally affected people definitely helps, I guess.

Yeah, and cancer disproportionately affects older people. Quite often they’re single because they’re of an age where their life partner has died. And so, they’re often single. They’re coping with it on their own. And this gives them a community, a community of friends. A lot of our sessions, we’ll go for coffee afterwards, and we might be at coffee for longer than we are in the rehabilitation session [laughs]. But it really helps, and people get help, lifts going to treatment or things like that because getting involved in rehab, I very quickly discovered about prehab. And back in those days, prehab really wasn’t much talked about, but there was increasing evidence that, as soon as you were diagnosed, if you go on an exercise regime, an improved eating diet regime, it makes you fitter. As one consultant put it to me, it’s a no-brainer. The outcome of a program of treatment is often dependent upon the fitness of the person going into it; that if your health is poor, then you might not survive the treatment.

So, there’s real benefit from a medical perspective in being fitter in that you’re more likely to find treatment. But also people who undergo prehab recover more quickly and recover to a higher level than those who don’t. That’s a significant effect longer-term because chemotherapy and immunotherapy are very damaging. But I think the biggest area of benefit is in the psychological area. The moment you’re diagnosed with cancer, for most people, you are handing yourself over, you lose control completely. You hand yourself over to the medical professionals who say: “You’ve got cancer. You know, go home, get on with your life until we send you the information for your operation or your treatments begin.” And a lot of people, anxiety levels go through the roof, and they’re very fearful. There is nothing positive, and there’s nothing they can do. You know, they are entirely dependent on the process of the of the medical system, health care system.

But imagine a different situation where: “You’ve got cancer. We’re going to put together a treatment plan for you. This is what you can be doing that’s going to help you respond to the treatment better, improve your chances of recovery, lower your risk of recurrence.” You know, that’s something you can do. And so prehab programs typically involve exercise, getting you as fit as possible; diet, particularly reducing weight for people who are overweight, but a healthy diet as well; and sleep. Understanding how best to get a good night’s sleep because if you’re not sleeping well, then that affects your physical health significantly, but also the issues around anxiety and things which grow in the night.

And then your mental health generally. So, if you’re managing your thoughts; because a cancer diagnosis, for a lot of people, they think cancer is a death sentence, but actually isn’t. Most people survive these days. You’ve got to be a lot more realistic and be able to handle that and also know when and where to get help, if it’s affecting you. So, prehab is really, really a game changer, I think for people, it would have a significant effect. But again, it’s having difficulty getting rolled out and the consultants to know that it’s there. We’ve got a problem in a lot of the countries that people don’t get referred onto it because the consultants don’t realize the benefit it might have.

I see. And do people get the type of information from the support group you set up? The online support group, for example?

Yeah, absolutely. We really encourage people to seek prehab and rehab. Yes. And I believe that they should actually be the same thing. When somebody is diagnosed with cancer, they usually fit in well. There’s no reason why they can’t just go along to the existing rehab classes for the fitness side of things. So, but yes, they do need more advice. They need all that mental health and diet advice. It’s a very important thing for them to get that information. And typically they’re not getting it. So, there are online resources for prehab, and so we direct people to those. And there is one prehab group which will deliver those things online, one-to-one service. Those things are available. And I believe everybody should be offered prehab. Cancer diagnosis; right, you can help yourself. Start prehab now. Yeah. Start prehab the moment you leave this room.

Okay. Definitely makes sense. This actually leads to leads me to my last question of the interview, which is what are your plans for this year’s Colorectal Cancer Awareness Month or maybe what are Digestive Cancer Europe’s plans, since you’re involved with them, too.

Right. So, Digestive Cancers Europe, I guess they do have plans [laughs], but I should really get you the information on those because there’s basically a steps campaign that you do your steps for colon cancer and step up for colon cancer/colorectal cancer. But it’s different in the UK because Colorectal Cancer Awareness Month falls in March, and in the UK that is the month that Macmillan have their cancer support campaign. And nobody wants to be trying to pitch a fundraiser against Macmillan, you know [laughs]. And so, in the UK, we have Bowel Cancer Awareness Month in April, and so the Bowel Cancer UK run quite a big campaign during that period, which means that I usually get to do awareness speaking for Bowel Cancer UK, for different groups, and during that month I’m doing a lot of that.

But also, what we’re doing in my, so I set up a group for the Bowel Cancer Support Group UK and that is entirely people who’ve been affected by bowel cancer/colorectal cancer, and what we really like to do is just raise awareness through whatever means we do. And because we’re a social media-based thing, this is more about finding things that we can all share. We’ve got three and a half thousand members; they can share stuff and so we can develop messages that will get out there on cancer awareness. And definitely a big theme for us this year will be increasing uptake of screening. As screening age gets lower and lower, you just need to bring that on for people who’ve never really considered it. If you’re in your early fifties, you’ve never heard of it.

So, raising that awareness, but also there are quite a number of charities which we will be pointing to do for fundraising and the like. I’m involved in several cancer charities working on bowel cancer/colorectal cancer. Our main thing will be to increase awareness and fundraising through social media. And I know there’s this one coming up just at the end of this week; a woman wants to do something and she’s organized a concert, and there’ll be lot more of that kind of things. Fundraisers like that. I usually grow tomatoes, so I’m setting up my tomato seedlings over the next couple of weeks, and in April I will be selling tomato seedlings and in previous years I’ve usually raised about £2,000. So it’s an important thing.

During COVID, the cancer charities, a lot of charities, but cancer charities in particular, their income plummeted and they were absolutely decimated. They had to lose staff. I think, Bowel Cancer UK, their income dropped 75%, so that vastly changes what they can do. But gradually things are coming back up again now. We can do what we can to support them.

Which is good to hear. Excellent. Many thanks, Steve, for your time and for the interview. It’s been really enjoyable. I’ve learned quite a lot, and yeah, thank you.

Well, thank you. It’s good to have the opportunity to raise awareness.

Colorectal Cancer Awareness Month: An Interview with Stephen Rowley (Cancer Survivor / Patient Advisor) – Part 1

For this episode of Karger’s The Waiting Room Podcast on Colorectal Cancer Awareness Month in March, we spoke with Stephen Rowley. He is a colorectal cancer survivor, and currently serves as Patient Advisor at Digestive Cancers Europe. Stephen also helps to organize cancer rehabilitation services and founded the national Bowel Cancer Support Group UK. Furthermore, apart from having played a role in the development of the internet and internet security, he is an interdisciplinary scientist, active musician, visual artist and keen sailor.

In our interview we focus on the aspects of prevention and screening, stigmatization, and cancer rehabilitation regarding colorectal cancer.

This is the first part of our two-part special on colorectal cancer. The second part can be found here.

Note: The statements and opinions contained in this podcast are solely those of the speaker.

Podcast Interview

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Transcript

Hello Steve, and welcome to the Waiting Room podcast. First of all, please tell us a bit about yourself and your patient journey in terms of colorectal cancer.

Well, yes, I was diagnosed when I was 60. In fact, I was diagnosed the week before I was 60, with colon cancer, and that was in 2015. It came out of the blue, didn’t know anybody with cancer, let alone colon cancer. And I didn’t know there was any problem in the family or anything like that. And I was diagnosed stage, well, after surgery they staged it, stage 3c. So that was quite extensive local spread in the lymph nodes and also in the blood vessels. And then I had chemotherapy, 12 cycles of FOLFOX, and then you’re left to get on with trying to work out how to live with that. So, I felt perfectly fit and well when I actually had the cancer. But after the treatment, you know, you’re pretty wrecked. And so, yes, so that was me.

But my brother Damon, I had at the time three brothers, and each of them then, they were in their fifties. And I said to each of them: “You know, get checked!”, and my brother Damon had symptoms, but it took two years to convince the doctor to refer him. And when they did, he was stage 4 and died within six months. So, there was a big issue there. The doctor wouldn’t refer him because he was too young. He was under 60, and 60 was the start of the screening age. So, it couldn’t be cancer, could it? That got me very interested in it. And since then I’ve discovered that we have a family propensity. There’s a genetic element to it, but we’re not Lynch syndrome, so there isn’t a test for it. But the wider family knows about it.

I had no idea my grandmother died of it, or her sister or my aunt, because that generation, those generations, they just didn’t talk about it, you know. They wouldn’t have talked about anything like that. We only found out by actually getting the death certificates, and there you get the detail. So, that’s how I ended up getting very involved in understanding it. Once I understood it, then I got more involved in the actual, various methods to help improve the situation.

Speaking of which, colorectal cancer is a topic that runs in my family too, or rather my wife’s family. So, it’s close to my heart. And you mentioned getting more involved. Could you please us tell us a bit more about your task as the patient advisor for Digestive Cancers Europe, for example?

Okay. So, I’m a member of the Patient Advisory Council, the PAC. We advise the Board of Digestive Cancers Europe, which is very patient-focused and campaigns really at all levels, but particularly at government levels, to improve the lot for people with colon cancer or to help prevent or to improve screening. DiCE, or Digestive Cancers Europe, does a lot of advocating on cancer at all levels and particularly government level to improve the lot for people affected by colon cancer. So, that’s encouraging countries to implement screening programs and to make sure people have the best kind of access to the treatments.

It’s a very broad scope that Digestive Cancers works on. And also, the organization is an interface between companies and patients. So, often we get requests coming in to, you know, looking for people who will be able to participate in drug trials and the like, design of trials, which I’ve been doing, and surveys. Yeah, all kinds of stuff. It’s a very broad remit. We get involved not just in advising the board, you know, we get involved in it in a lot of different ways. And there’s masterclasses that DiCE runs and also summits; an annual summit on screening, for instance.

I’ve come across a statement by the International Agency for Research on Cancer that they estimate that the global burden of colorectal cancer will increase by 56% between 2020 and 2040. What are your thoughts on this?

I think it’s an underestimate. Colorectal cancer is primarily an aging disease. So, it happens because our DNA gets older. And as you get older, your DNA gets older, your cancer protection systems in your cells get older as well. And you just get more and more risk of cancer as the age goes up. When you look at the curve, it’s a classic exponential growth. It starts off quite slow and it curves up and then it ramps up and it, currently in the UK, peaks around 75 and then it drops off. That’s because there’s less people, they die of other things. But if we lived to 140, we’d all get it.

It happens because the lining of the gut is the part of the body which is replacing itself most frequently and most quickly. It replaces itself every six days. And that means there’s more cell replication going on there than anywhere else in the body. That’s why there’s more risk of errors in copying. And if you’ve got any problems with, you know, short telomeres in your genes, you’ve got more risk of mutations that will cause cancer.

So, worldwide, particularly in developing countries, as their health systems improve and they get older, you know, their age profile, demographic in the country increases and people live longer, then more people will get colorectal cancer. You know, it’s a simple thing. Sub-Saharan Africa, and they don’t know what’s hit them yet. A lot of the countries don’t have much in the way of cancer programs and no screening. But that is because the people generally die younger, and that’s going to change.

Please tell us more about the importance of screening and especially cancer screening programs.

Well, in the UK, if you go back 20, 25 years, most people who were diagnosed with colon cancer died of colon cancer because they would be diagnosed at the stage 4. It’s already advanced because they would go to the doctor with symptoms. And if you’re getting the symptoms, probably it’s already quite late-stage. It certainly was with me. I had symptoms, and I was in stage 3. Stage 3c. The most common colon cancers are very slow-growing. The doctor said, I’ve probably had my, my cancer probably started at least ten years before and maybe up to 15 years before. And it takes a long time. It grows as a polyp inside the gut and it doesn’t spread until it gets to a particular size and stage and whilst it’s growing, it’s giving no symptoms whatsoever.

And so screening is vital to be able to pick up colon cancers at that early stage, and then something can be done about them and you stand a good chance of recovery. So, the survival rate was less than, I think, less than 10%. And then in the noughties, screening was introduced using the fecal occult blood test. And then more recently, the FIT test, which is the fecal immunochemical test, which is much more specific and sensitive. But, it’s turned it around completely. Now your survival rate is getting on for 70%, and that’s entirely down to screening. Screening picks it up earlier than you would pick up any symptoms. It’s very important. If you look at other cancers like pancreatic cancer, the symptoms are very difficult to pick up there. And so, pancreatic cancer has a notoriously low survival rate.

In your role as a patient adviser, did you speak to a lot of people that didn’t get their cancer screening done due to COVID and being afraid to go to a GP or to a clinic?

COVID had a massive impact, and I started a cancer support group for colorectal cancer. Just before COVID, the membership of this group was very low, maybe 30 members, 40 members, something like this, until October, oh no, September. And suddenly it rocketed up when the colonoscopies started happening again. And we had a massive peak, which went very high and has now settled to a steady climb of 50 new members a week.

So, there was a big backlog there. And undoubtedly people, because of the issue during COVID, they will have had late diagnoses. Yeah, and that’s the issue. There were very sad cases of people who, because of COVID, couldn’t get the treatments they needed. And they progressed from stage 3 to stage 4 and died as a result. And so, COVID did have an impact on that, yes.

Among the risk factors for colorectal cancers are, for example, obesity, tobacco smoking and alcohol consumption. Which role does stigmatization play in this regard? Or did you encounter any kind of stigmatization?

I think generally, well, it is quite interesting. So, obviously we see different cultures. There are some cultures which will quite openly talk about bowels and other cultures which just will not. And for instance, certain parts of the Asian community in the UK, I will rarely hear from the ladies in that community with the disease, but I will hear from their sons talking on their behalf. And they tell me that their mothers would not go to the doctor. They wouldn’t go to the doctor about anything below the waist.

Because they feel ashamed.

Ashamed. And it’s to do with that culture, their age. Younger women in that same community – no problem. And there has been some work done on this. The projects I’m working on are really to do with: “How do we increase screening uptake in those communities?” And there’s quite a lot of issues in some African communities around this. So, it’s a real problem and something they’ve got to address as the age demographic profile changes in those countries. They’ve got to get more aware, you know, so they’ve got to address that on quite a scale.

What else can or rather needs to be done? This is, what are the unmet needs of those living with colorectal cancer? For example, what about healthy lifestyle habits and physical activity?

Right. I’m just working on some material to do with screening policy in the UK. And I was reviewing one of the documents and I thought, this document is looking at how we implement a screening program. But you can’t separate it from prevention. And that’s something that’s become clear to me now. I’m part of an international group of patient advocates and scholar activists. In that group we’re always talking about the big picture, that prevention is so important. And you can’t talk about a screening and a cancer awareness program without actually including prevention as well.

So, we do know lifestyle factors are important. You look at some of the things. Obviously, smoking. There’s been enormous work done on that because smoking affects so many cancers, increases the risk in so may cancers. We know alcohol increases it. Processed meat increases risk of colon cancer. But being overweight and obesity, not just obesity, just being overweight is also a significant factor in not just colon cancer but in lots of cancers and also type 2 diabetes. And they are really down to lifestyle factors about diet and exercise.

These are significant things which a lot of people just don’t realize. They think they’ve got a weight problem, and their biggest concern is how it makes them look, you know, the esthetic aspects. We’re really trying to get across the message that being overweight is a significant risk to your life, to your health. And, if we could change those… There are also pieces of research that show that if you do get cancer, you know, colon cancer. We’re only talking about a risk; it’s a risk factor. Smoking, alcohol, obesity, processed meat – they don’t cause the cancer, they increase your risk.

Having a higher risk, if you can reduce your risk, that is a significant factor. But also, if you do get cancer because there is a random element to this, that’s what we call sporadic cancer. You can have the healthiest lifestyle going, but you can still get it just because of the nature of the aging of DNA. That by having good lifestyle factors, healthy diet, good exercise regime within the right optimal weight for your height and like, that it improves your chances of recovery and reduces the risk of recurrence. So, right from beginning right through to post cancer, healthy lifestyles are a significant factor.

Thank you for your insights, Steve. Please stay tuned for the second part of this special, which will be published shortly.

Prostate Cancer Awareness Month 2022: An Interview with Sally Sara (Prostate Cancer Specialist Nurses of Australia)

For Prostate Cancer Awareness Month, which is held in September each year, we got in touch with Adjunct Professor Sally Sara, Director of Nursing Programs for the Prostate Cancer Foundation of Australia (PCFA), to find out more about the Prostate Cancer Specialist Nurses of Australia.

What does it take to become a Prostate Cancer Specialist Nurse?

Being a Prostate Cancer Specialist Nurse (PCSN) is all about having a passion for supporting men and their families through all stages of prostate cancer diagnosis, treatment and beyond.

PCSNs are often the first point of contact for men who are newly diagnosed, and they continue to be a vital source of information and support from navigating treatment, to seeking referrals, and managing treatment side effects for the months and years that follow.

Our PCSNs are all qualified nurses with experience in urology, oncology or other relevant areas of healthcare. On joining our program, they undertake an in-depth prostate cancer nursing e-learning course and participate in a robust annual professional development program.

What are the tasks of a Prostate Cancer Specialist Nurse, and can any patient contact you when in need?

PCSNs are available to access for all men in Australia diagnosed with prostate cancer. We have over 100 nurses in locations across Australia, plus a dedicated team available via telephone. Prostate Cancer Foundation of Australia (PCFA) nurses:

• Provide clear and consistent evidenced-based information and resources about all aspects of prostate cancer.
• Help men to understand their diagnosis, treatment options and ways they can manage side effects.
• Provide men with support to make informed decisions about their health.
• Offer relevant practical and emotional support tailored to their prostate cancer needs.
• Link men with local support networks including Prostate Cancer Support Groups, PCFA’s Prostate Cancer Counselling Service, and peer-support programs.

Which role does the Prostate Cancer Specialist Nursing Service play, also in connection with the Prostate Cancer Foundation of Australia (PCFA) and when working as multidisciplinary teams?

PCSNs, placed in health services across Australia, are supported by the PCFA working in partnership with their employing local hospital or health network. PCSNs are an integral member of health service multidisciplinary teams and work closely with all relevant health professionals to provide a high level of patient care to men diagnosed with prostate cancer.

Please let us know more about the Prostate Cancer Specialist Telenursing Service.

PCFA’s Prostate Cancer Specialist Telenursing Service was first launched in March 2021 to meet an increasing demand for accessible prostate cancer services. Through the telenursing service, all Australians impacted by prostate cancer, no matter where they live, can now have access to a Specialist Nurse simply by picking up the phone.

Our Specialist Telenurses are all qualified nurses with training and experience to support men through a diagnosis, and provide information on everything from treatment options to management of side-effects and referrals to other health care professionals.

In addition to other challenges, what is the impact of prostate cancer on the mental health of both patients and their families/caregivers?

Prostate cancer is the leading cause of cancer in Australia, with over 24,000 men diagnosed with the disease every year.

With over 240,000 Australian men alive today after a prostate cancer diagnosis we know that one in five of those men will experience anxiety or depression as a result of their diagnosis. Of concern, patients also face a 70% increased risk of suicide death.

Right now, 72% of men also don’t seek support for their distress which urgently needs to change.

Our PCSNs, Telenurses and Counsellors are helping to address the problem and help reduce the distress experienced by men with prostate cancer and their loved ones.

To which extent do you participate in events, such as Prostate Cancer Awareness Month in September?

Prostate Cancer Awareness Month is a major month on our calendar and we encourage people right across the globe to use it as an opportunity to help raise awareness of prostate cancer and encourage more men to speak to their doctors about their testing options.

People across the world can also join “The Long Run”, a unique challenge which encourages individuals and teams to run, walk or wheel 72 km throughout September to make a difference and help end the pain of prostate cancer. People can register here.

Many thanks for your time and for the interview.

Shine Night Walks: An Interview with Gareth Mulcahy (Cancer Research UK)

From August to October, thousands of people across the UK will come together to take part in Shine Night Walks to raise money for life-saving cancer research. These spectacular walks take place in some of the UK’s loveliest cities, taking in local and national landmarks that have been lit up to make the night truly special. To sign up, visit shinewalk.org.

 To find out more about these events and the impact they have on cancer research, we turned to Cancer Research UK’s head of events and sport, Gareth Mulcahy.

What is the history of Shine Night Walks?

Our Shine Night Walks have been running for 12 years – the first ever event took place in Manchester in 2010 and saw 7,400 people take part in a walking marathon through the city’s streets at night. The event raised GBP 1.7 million and kick-started Shine Night Walk as we know it today. In 2011, we added London and Glasgow to the schedule, and we’ve continued to grow ever since.

This year, Shine Night Walks will take place in 19 cities across the UK, with 23,000 people walking through the night to help beat cancer. All cities offer a 10 km route, and our London Shine Night Walk has half marathon and full marathon options, too.

What is the main attraction for people to take part in a Shine Night Walk?

Shine Night Walk is no ordinary event, it’s an exciting and magical night-time walk. As well as passing some of the UK’s most famous landmarks, it allows people to see and experience their city in a whole new way. People often enjoy doing it as a group, or team, so it’s a fun social occasion, too. All Shine Night Walk events are non-competitive, and participants are encouraged to walk at their own pace. There is always a great atmosphere.

Of course, a lot of people who take part have been affected by cancer, either having experienced it themselves or because they know someone who has had a cancer diagnosis. Shine Night Walks offer the chance to celebrate and remember people while raising money for research that will save lives.

Everyone who signs up is given the option to fundraise for all cancers or choose an area or type of cancer research to fundraise for.

Why do people have to pay in order to take part in a Shine Night Walk?

Entry fees help with the cost of putting on the event.

Once a person has signed up, they will receive a Shine Night Walk pack. What is in the pack?

All participants receive a Shine Night Walk pack, which includes a unique walker number, a t-shirt, a course map and a back sign to write specific reasons for taking part, or share a tribute to someone special.

We’re making conscious efforts to be more sustainable, so we’re sending fewer printed materials this year. You can, however, visit our website to download extra materials such as a fundraising pack with lots of useful information and ideas, posters, and more.

How can people support Shine Night Walks without taking part in the walk itself?

As well as taking part, there are other ways that people can support Shine Night Walks, including volunteering. Our volunteers are beacons in the dark, offering participants encouragement throughout the challenge and cheering them on. The volunteering roles include helping set up the course, guiding supporters around the cities, and handing out well-earned refreshments. We simply couldn’t run the events without them. There is more info about volunteering here.

People can also help promote Shine Night Walks by sharing their experiences of cancer by signing up to be a media volunteer. A lot of people sign up to our events after reading about people’s lived experiences. Full details can be found here.

How are Shine Night Walks helping Cancer Research UK to achieve its goals?

At Cancer Research UK, we rely on the generosity of our supporters to fund our life-saving research into the prevention and treatment of all types of cancer. 1 in 2 of us will get cancer in our lifetime. Everyone who takes part and fundraises through the Shine Night Walk will help Cancer Research UK bring about a world where everybody can lead longer, better lives, free from the fear of cancer.

Are there equivalents of Shine Night Walks on an international scale?

We don’t have any Shine Night Walks outside of the UK. There are international challenge events which will allow participants to fundraise for their chosen charity.

About Cancer Research UK

Cancer Research UK is the world’s leading cancer charity dedicated to saving lives through research, influence and information. We want to accelerate progress and see 3 in 4 people surviving their cancer by 2034.

Many thanks for your time and for the interview.

Bladder Cancer Awareness Month 2022: An Interview with Jeannie Rigby (CEO Action Bladder Cancer UK)

Bladder cancer affects all ages and is a very common cancer, e.g., it is one of the ten most common cancers in the UK. Bladder cancer has a high mortality rate and shows a very high recurrence rate.

For Bladder Cancer Awareness Month, which is held each May, we spoke with Jeannie Rigby, Chief Executive of the charity Action Bladder Cancer UK (ABC UK).

Please tell us a bit about Action Bladder Cancer UK, i.e., its inception and goals.

ABC UK was set up in 2009 by a group of patients and clinicians as a UK-wide bladder cancer charity. We work to get bladder cancer recognised as a common cancer and the level of acknowledgement, public awareness, new treatments and research investment which it merits – and which those with bladder cancer deserve.

The charity’s board includes both bladder cancer patients and specialist clinicians. Our ABC UK team includes core and project staff and trained volunteers (all bladder cancer patients). We work closely with many bladder cancer specialists within urology, scientific research, cancer nursing and general practice. Our patients provide the insight of direct experience and also actively contribute to cancer advisory panels, research committees, clinical trials, support groups and regional cancer networks.

We deliver our vital work under 4 charitable objectives: to raise awareness of bladder cancer and the related issues; to support patients; to improve outcomes for patients; and to fund and encourage research into bladder cancer.

What can be done about bladder cancer regarding empowering patients and the everyday challenges of living with bladder cancer?

Patients need the right kind of support and information. We take great care to ensure that we provide high-quality information and direct patient support to help patients at the appropriate stage in their treatment journey.

Patients need better support at certain, difficult times. This may be helping patients to make the difficult choices between undergoing Bacillus Calmette-Guerin (BCG) treatment or having their bladder removed or helping patients to deal with the many challenges when adapting to living with a urostomy. For example, we have developed patient support materials working with a group of patients who have undergone a cystectomy (bladder removal), collecting their own experiences and tips on how to live with a urostomy and running online and face-to-face sessions for those who have recently had their bladder removed.

Providing someone to talk to at those difficult points, such as just being diagnosed, making treatment decisions or facing difficulties in adjusting to life after removal of your bladder, can make a big difference. This is why ABC UK works to set up bladder cancer patient support groups, run patient events (both online and face to face), and provide direct patient support – putting people in touch with another patient who has gone through the same experiences.

Also, a very important aspect of empowering those with bladder cancer is by giving patients a voice – bladder cancer is neglected, and there is much work to be done on raising the profile of this common cancer, both with the public but also by lobbying government, medical research bodies and decision makers.

In your opinion, what are the overlooked needs of patients with bladder cancer?

There are few treatment choices for those with bladder cancer and, in the majority of cases, patients are still faced with the same, limited, treatment options as decades ago.

Bladder cancer is overlooked in terms of research investment, and this shows in these limited treatment options, and also in testing and diagnosis.

Many patients are faced with cystectomy (bladder removal) – which is major surgery with a profound impact on your daily life. New bladder saving treatments are badly needed. Whilst there are some exciting developments in new immunotherapies and targeted therapies for treating bladder cancer – most of these are still at the clinical trial stage.

There is a need for a wider network of support – existing patient support services within hospitals and the wider community provide little for someone with bladder cancer. Many patients come to us for this help, having found no information or answers to their questions elsewhere.

Finally, although this is probably the underlying reason for many of the issues I have mentioned: We need a wider acknowledgement of bladder cancer as a common, and overlooked, cancer – one which has poor patient outcomes and relatively little research investment.

Please tell us more about the Patient Decision Aid that you devised. What was the reason for that?

The ABC UK Patient Decision Aid provides information about the most common treatment options available for those patients with high-risk non-muscle-invasive bladder cancer.

As these treatment choices are limited, patients with this type of bladder cancer, faced with the prospect of their tumour perhaps becoming invasive, often have difficult choices to make. The main options are usually treatment directly into the bladder: most commonly immunotherapy with Bacillus Calmette-Guerin (BCG) (or possibly mitomycin C chemotherapy) or cystectomy – surgically removing your bladder, and often other related organs, completely.

This particular decision remains a difficult one and ABC UK are frequently approached by patients or family members, through our direct support service, asking for advice and information at this challenging stage of their treatment.

In response to this need, ABC UK worked with patients and clinicians and produced this unique decision aid in 2019 – updating it this year to reflect varying treatment practice.

It is designed to help patients have a discussion with their clinical team about what’s best for them personally, taking account of overall health as well as their cancer grade and stage. It’s not intended to make those decisions for a patient, but to give the information that will help them think about the effects each option may have on their life, and help them to have these conversations and understand the best way forward for them. It can also help patients talk to partners and family members about a difficult topic. It’s proved to be an extremely valuable resource and is part of our range of ABC UK patient materials in print and online.

Why is raising awareness of bladder cancer so important?

Over 20,300 people are diagnosed with bladder cancer in the UK every year. Globally, over 570,000 are diagnosed every year.

It is not a rare cancer – it’s one of the ten most common cancers in the UK, but it does have the profile and level of awareness of a much rarer condition.

We get told again and again by patients that the first they had heard of bladder cancer was when they were diagnosed. Bladder cancer has a profile of poor outcomes and high recurrence levels – and can often be diagnosed late. It can be hard to diagnose and can sometimes be mistaken for something else (particularly in women, where symptoms can be confused with urinary tract infections (UTIs) or other gynaecological conditions).

People need to be aware of the symptoms – to take action and consult their doctor if they see anything different. There can also be a reluctance to talk about any problems with the urinary system, so we need to get the message across that if you see blood in your urine (even just once), are being treated for persistent UTIs or notice anything unusual, you need to get it checked out.

May is Bladder Cancer Awareness Month – and ABC UK is joining with bladder cancer organisations worldwide to raise awareness of the symptoms. The theme is: “Don’t Go Red – Go to a Doctor.” In other words, don’t be embarrassed to talk about it. It may not be bladder cancer, but don’t take that risk – take action.

Many thanks for your time and for the interview!

Oesophageal Cancer Awareness Month 2022: An Interview with the Less Survivable Cancers Taskforce (LSCT)

In 2018, six charities came together and founded the Less Survivable Cancers Taskforce (LSCT). Lung, brain, liver, stomach, pancreatic and oesophageal cancers have the lowest survival rates, and these have not improved for over 40 years. Having noticed that these types of cancer were being underfunded and overlooked, the Action Against Heartburn, the Brain Tumour Charity, the British Liver Trust, Guts UK, Pancreatic Cancer UK and the Roy Castle Lung Cancer Foundation formed a partnership to tackle this problem.

To mark Oesophageal Cancer Awareness Month, we turned to the LSCT to discuss its campaign and the details of this type of cancer.

Members of the Less Survivable Cancers Taskforce (Source: Less Survivable Cancers Taskforce)

What are the core objectives of the Less Survivable Cancers Taskforce (LSCT)?

We want to improve outcomes and experiences of all people diagnosed in the UK with a less survivable cancer.

There are some cancers which have seen remarkable progress in survivability but others that are just as deadly as they were 40 years ago. Together, six of these less survivable cancers (lung, brain, liver, stomach, pancreatic and oesophageal) are responsible for half of all deaths from common cancers and make up a quarter of cancer cases.

People diagnosed with these cancers have a shockingly low life expectancy. Today, on average, the chance of someone surviving for five years after being diagnosed with one of these cancers is only 16%. We are campaigning for focused attention and investment to diagnose these cancers earlier and faster, and to ensure everyone receives the best treatment and care available. We also need to see a step-change in research investment so we can find better tools to diagnose these cancers, and better treatments for people once diagnosed.

Oesophageal cancer is one of the six types of cancers you focus on. What are the risk factors for oesophageal cancer?

The most prevalent form of this cancer is the adenocarcinoma type where the key risk factor is obesity. This is because the extra weight on the stomach pushes stomach acid up into the oesophagus which, in excessive cases, can cause the cancer. In the squamous cell type of the disease, the key risks are smoking and alcohol (especially together) which likewise adversely affect the oesophagus and can cause cancer. As smoking has declined, so the incidence of squamous cell oesophageal cancer has declined, while that of the adenocarcinoma type has increased with the rising incidence of obesity in modern society.

“See your GP if you notice anything unusual for you” (Source: Less Survivable Cancers Taskforce)

What are symptoms of oesophageal cancer?

 It’s vital that people recognise possible symptoms and see their GP if they are worried. Symptoms can be vague and include difficulty swallowing, persistent indigestion or heartburn, loss of appetite and weight loss, vomiting, pain or discomfort in stomach, chest or back, a persistent cough, hoarseness, tiredness and shortness of breath.

Why do significantly more men than women suffer from oesophageal cancer?

 More men than women suffer from oesophageal cancer because men tend to carry excess body weight on their stomachs, while women tend to carry it on their hips. The effect of excess weight on the stomach can push stomach acid into the oesophagus which in excessive cases can cause the cancer.

“Close the deadly cancer gap” (Source: Less Survivable Cancers Taskforce)

The LSCT has an aim to double survival rates by 2029. How do you hope to achieve this?

 We are advocating for specific commitments and targets for the less survivable cancers to drive forward the transformational changes we need in diagnosis, treatments and care. We believe that we need tailored strategies which set an ambition to double survival rates for people with a less survivable cancer over the course of the next decade. These strategies could boost survival rates by prioritising:

• optimal pathways for everyone diagnosed with a less survivable cancer;
• boosting research investment to achieve breakthroughs in diagnostic tests & treatments; and
• investing in early detection and faster diagnosis.

What else are you hoping to achieve by 2029?

We hope to see action prioritised by governments and health services across the UK in order to improve outcomes and experiences for everyone diagnosed with a less survivable cancer, including clear strategies implemented by health services in England, Scotland, Wales and Northern Ireland.

Find out more on our website and follow us at @LessSurvivable.

Many thanks for your time and for the interview.

Testicular Cancer Awareness Month: An Interview with Steven Crocker (Testicular Cancer Awareness Foundation)

For Testicular Cancer Awareness Month in April we spoke with Steven Crocker. He is a stage 2b testicular cancer survivor, board member of the Testicular Cancer Awareness Foundation based in Colorado, USA, and host of the podcast “It Takes Balls”.

Note: The statements and opinions contained in this video are solely those of the speaker.

One particularly important aspect regarding testicular cancer is the role of testicular self-examination and early detection:

Colorectal Cancer Awareness Month 2022: An Interview with Dr Angela Nunnery and Dr Millard D Collins

Dr Angela Nunnery and Dr Millard D Collins are family medicine doctors who know about the importance of colorectal cancer screening. They are passionate about prevention and advocate for early detection of cancerous tissue. Both recommend regular screening for colorectal cancer in order to make sure that any colon polyp will be detected and removed ideally before it can develop into cancer.

They are co-authors of the soon-to-be-published “Colorectal Cancer Screening Modalities”, a resource for health care professionals. It illustrates the current recommendations on screening for colorectal cancer and gives a profound overview of the screening modalities that are available as well as in development in the USA. For this interview for Colorectal Cancer Awareness Month, which is held in March, we wanted to know more about the different screening methods from the patients’ perspective.

Dr. Nunnery, Dr. Collins, there are basically three types of tests to detect and diagnose colorectal cancer: visualization tests, stool-based tests, and blood assay tests. What are the pros and cons of each type of test?

 There are three types of tests, as stated:

• Visualization tests include colonoscopy, flexible sigmoidoscopy, and CT (computed tomography) colonoscopy. Visualization tests can show the various landmarks of the colonic areas explored and provide information as to the size, shape, and composition of masses seen. Colonoscopy and flexible sigmoidoscopy can both also take biopsies of lesions seen, and often better characterize the lesion prior to biopsy results. These modalities also eliminate the need for follow-up testing that occurs with other modalities if there are findings on screening. Those other modalities require colonoscopy if screenings are positive. This includes CT colonoscopy, which can visualize, but cannot attain biopsy samples. Cons associated with visualization testing include the need for bowel preparation, variations based on the skill of the specialist performing the exam, and risk of perforation.
• Stool-based tests include gFOBT (guaiac-based fecal occult blood test) and FIT (fecal immunochemical test). These tests are done to screen blood present in samples of stools to be provided. Advantages of these tests include being cheaper, widely available, and non-invasive. Disadvantages include the handling of stool (to create the sample and to process it), inability to differentiate non-colonic causes of bleeding or altered samples based on medications or food, and the requirement for visualization follow-up on positive screenings (i.e. colonoscopy).
• Blood assay tests are new and promising technologies that are emerging, such as MT-sDNA (multitarget stool DNA). The pros would include its reported abilities to capture evidence of lesions of all types, including precancerous polyps to cancerous lesions at various stages. Also, this testing would be non-invasive. Cons would include expense at this point, high false positives, and the need for visualization follow-up on positive screenings (i.e. colonoscopy)

How do healthcare professionals decide which method to use for each individual patient?

Healthcare providers consider several factors when deciding which method to use for each individual: costs, convenience, and the patient’s medical history and possible medication interactions. Ultimately, all viable options should be discussed with the patient while discussing the pros and cons of each. Patient preference is the option most commonly chosen.

There may be some in-depth discussion when considering the risks factors present, previous tests and associated findings, and the potential for follow-up. In select cases, the option for colonoscopy may be selected when the likelihood of biopsy is extremely high due to reasons stated above.

Invasive screening methods are considered more effective than non-invasive screening methods. Why are non-invasive methods still being used?

Non-invasive methods are still being used for several reasons when it comes to screening for colorectal cancer. Cheaper costs associated with these test options are big ones. It is critical to eliminate the need for anesthesia and a facility charge associated with invasive screening options. The convenience of being able to do the test in the comfort of one’s own home makes it attractive for many. Some patients have considerations that may make anesthesia or mobility a challenge, including medical conditions, medications, and other things (morbid obesity, quadriplegia, stroke deficits, anatomic colonic variants). Furthermore, non-invasive methods are still highly effective for detecting colorectal cancer at various stages, thus impacting mortality rates. Their main drawback is the need for colonoscopy in the event of a positive screening.

What are the key barriers identified that can prevent a person from going for a colorectal cancer screening? How can these barriers be overcome?

Some of the key barriers preventing a person from going for colorectal screening include costs, fear of the procedure or results, past experiences that were unsatisfactory in the healthcare setting, not being made aware of the recommended testing method or interval by their provider, not having a routine provider, and lack of insight due to a medical condition (i.e. mental issue or substance abuse).

These barriers can be overcome through constant engaging of both patients as well as providers on the up-to-date guidelines, recommendations and characteristics of each, and removal of any stigma associated with receiving these services. There should also be funding available for screening of cancers that can be detected early to improve access and decrease morbidity and mortality associated with development of colorectal cancer.

New methods of screening are being developed and tested, such as detecting circulating tumor cells in the blood stream. What makes you think that these new methods will eventually become the norm for colorectal cancer screening and methods like colonoscopies will be a thing of the past?

While there is agreement that new blood testing modalities show promise in the early detection of colorectal cancers in selected patients, the data is too preliminary to reach this conclusion. Similarly, while they can pick up evidence of the presence of tumors, the premise is that cells have been released into the blood stream and no information is provided as to where in the colon such lesions are located. As such, colonoscopies would still be needed to follow up any positive screens. This visualization technique is likely here to stay.

Many thanks for your time and for the interview.

Multiple Myeloma Awareness Month 2022: An Interview with Lisa Ferguson (Myeloma Specialist Nurse)

On the occasion of Multiple Myeloma Awareness Month in March we spoke with Lisa Ferguson. She works as a Myeloma Specialist Nurse for the Oxford University Hospitals NHS Foundation Trust in the UK.

What is multiple myeloma?

Multiple myeloma, also referred to as MM or myeloma, is a type of blood cancer which arises from plasma cells in the bone marrow. It accounts for 15% of all blood cancers but only 2% of all cancers which is why a lot of people have never heard of it. It is more common in people over the age of 65 but can be diagnosed in people younger than this.

Plasma cells are involved in the immune system. They produce antibodies which help fight infection. In myeloma, the abnormal plasma cells in the bone marrow produce a large amount of a single type of antibody, known as paraprotein, which has no useful function. In most cases, paraprotein moves out of the bone marrow and into the blood; and it is often through the measurement of this paraprotein that myeloma is diagnosed and monitored.

Treatment is aimed at controlling the disease, relieving the complications and symptoms it causes, and extending and improving the quality of life. Myeloma is not currently curable but in most cases is very treatable, with a lot of effective treatments available. This means that even after successful treatment has provided a period of remission or stable disease, the myeloma will return (known as relapse). Myeloma is a very individual cancer in terms of how people experience complications, as well as how they respond to treatments, which can vary greatly.

For further information about myeloma including common symptoms and how it is diagnosed please click here.

What are the tasks of a Myeloma Clinical Nurse Specialist (CNS) and how does this differ from the role of an Advanced Nurse Practitioner (ANP)?

The tasks of a CNS are to:

• Provide physical & emotional support and advice regarding health concerns, and practical issues.
• Be the patients advocate.
• Promote health & wellbeing by providing education and information.
• Symptom control & management which can in turn reduce admissions.
• Co-ordinate care and be a liaison between different departments and teams involved in patient care; which in turn provides the patient with holistic care.
• Be a resource and support for patients and their carers/families.
• Service development.

The tasks of an ANP and CNS are fairly similar although an ANP has to have a Master in Nursing Practice and will be a non-medical prescriber who can physically assess and independently diagnose patients; however, you can become a non-medical prescriber without being an ANP. They will often run their own nurse-led clinics. That is not to say that nurse-led clinics cannot be set up and ran by a CNS.

What were the major breakthroughs in the treatment of multiple myeloma? What new treatments can be expected in the near future?

The introduction of myeloma-specific treatments such as bortezomib (a proteasome inhibitor) and thalidomide (an immunomodulatory imide drug (IMiD)) were important developments in the treatment of myeloma, as well as the later generations of thalidomide (lenalidomide & pomalidomide). More recently there has been the development of new proteasome inhibitors (PI) such as carfilzomib and ixazomib; and monoclonal antibodies daratumumab, isatuximab and belantamab.

We are also now using quadruplet induction therapy (4 medications) and the use of maintenance therapy post autologous stem cell transplant which is helping to increase length of remission.

Treatments that will be coming in the future include: potential wider use of CAR-T cell therapy, next generation medications of existing medications utilised within myeloma such as iberdomide (IMiD), and clinical trials that will be using bispecific antibodies.

You work with patient organisations, support groups, and charities, such as Myeloma UK or the International Myeloma Foundation (IMF). How do patients profit from this cooperation?

The benefits for patients that come from the cooperation are consistency of information being given to them. Knowing that they are being kept informed about upcoming treatments and/or trials that are relevant to the UK.

Being involved in the support group means that any medical questions can be addressed appropriately. It also helps to build a good relationship between the CNS and the patients, and their carers/relatives. The support group is a more relaxed and informal setting and there are times that queries are raised that might not otherwise be spoken about in a clinic environment.

What are your plans for Multiple Myeloma Awareness/Action Month in March? What will you do to raise awareness of this condition?

With the ongoing pandemic it is hard to organise a stand within the hospital which would be the normal approach. However, we will still be able to display information about myeloma in prominent areas of the hospital; as well as having information that can be taken away.

How has the ongoing COVID-19 pandemic impacted your work as a Myeloma CNS as well as the quality of life of multiple myeloma patients?

Generally, the CNS tasks and role have not changed although we are working more remotely; this is due to limiting the amount of face-to-face clinic appointments. We do still make sure that new patients are seen, and time is spent with them in person to go through the diagnosis and treatments, as well as seeing any patients that need CNS input. In some ways the need to be an advocate for patients has increased, as has the importance of communication within the team.

Patients have felt quite isolated due to the pandemic and for some the fact that clinics have moved to phone clinics where possible has increased this. There has also been an increase in anxiety especially when there have been relaxations in the guidance regarding shielding, face masks etc. There have been some changes to treatment with a focus more on using oral treatments, if appropriate, to reduce visits to the hospital; but this in turn means that they then miss the contact with the medical team that they would have had through DTU (Day Treatment Unit) visits, thus enforcing the potential feelings of isolation.

Many thanks for the interview!

Childhood Cancer Awareness Month 2021: An Interview with Phil Brace (CEO The Little Princess Trust)

For this year’s Childhood Cancer Awareness Month, we spoke with Phil Brace, CEO of The Little Princess Trust. The UK-based charity provides real hair wigs free of charge for children and young people who have lost their own hair through cancer.

Why do you prefer real hair for children’s wigs to artificial hair?

When many children and young people are told they have cancer, often one of the first questions they ask is: “Will I lose my hair?”

This is because of the way our hair so closely defines who we are, and its loss can seriously affect someone’s confidence and identity.

Our wigs are made from real hair and are hand knotted to give a natural look which alleviates concerns that some children may feel from wearing a wig.

Real hair wigs can also closely resemble a young person’s hair before treatment – something many children want to replicate when choosing the fit, style and look of a wig.

What is the difference/difficulty with children’s wigs compared to adults’?

The main difference is the size of the wig cap. A child’s head will grow until they reach adulthood and so getting the right size is essential to ensure the wig fits properly and is comfortable for the recipient. Our wig caps come in seven different sizes to ensure we can find the right fit for the child.

Andrew Barton, one of the ambassadors of the charity (source: The Little Princess Trust)

Do you get enough hair donations or is the supply difficult?

We are very lucky to receive donations from all over the world to ensure we can provide wigs to children and young people. We encourage supporters to make sure they have a minimum of 12 inches of hair to donate. However, as our longest wigs are our most popular, we are always incredibly grateful to those who donate hair in excess of 16 inches.

How is it possible to give the wigs away for free?

As a charity, we do not have any paid fundraisers and so rely on the support from the public to fund our service. Many people ask family and friends to sponsor their haircut – and these donations help to raise the £550 it costs us to make, fit and style each wig.

What else helps children to come to terms with their illness?

We know from speaking to our wig recipients that family and friends can offer a brilliant support network to someone undergoing such a traumatic experience. There are also other charities where young people can speak to peers with similar experiences. But we know that each individual is different and handles things differently.

Several hair donations (source: The Little Princess Trust)

You support research into finding better treatments for childhood cancers, e.g., by cooperating with the Children’s Cancer and Leukaemia Group (CCLG). Which areas of research are you currently focused on?

In 2016, thanks to the huge efforts of our fantastic fundraisers and corporate supporters, we were able to start funding pioneering academics and institutions leading the way in researching new and better treatments for all paediatric cancers. An area where there is so much work which desperately needs investment. We have now committed more than £15 million across 80 projects covering a range of childhood cancers.

We are striving to improve patient outcomes through access to new treatments through clinical trials as well as improving existing treatments and are working incredibly hard to identify innovative and impactful ways to improve survival and reduce the effects of treatment. The Little Princess Trust works in partnership with the Children’s Cancer and Leukaemia Group (CCLG) to find the most suitable projects. Some of the areas we are currently focused on include developing innovative new treatments for difficult to treat types of medulloblastoma and trying to further knowledge of the evolution of neuroblastoma to improve treatment.

What have you been planning for Childhood Cancer Awareness Month this year?

For Childhood Cancer Awareness Month we have published news stories on our website which have been promoted on our social media platforms. We have talked about the research projects we fund, why they are so important and how we can only fund them thanks to the amazing support we receive. We have also featured some of the people we have helped on our website and focused on the work we fund.

Kyle Matchett, for example, is a lecturer in Molecular Immunology at Ulster University and has received funding from The Little Princess Trust to see if approved drugs can be repurposed to more effectively treat acute myeloid leukaemia. Kyle has returned the support and, throughout Childhood Cancer Awareness Month, he and his lab team are walking the equivalent distance to Barcelona to raise funds for The Little Princess Trust and raise awareness. We are following their progress on our social pages while talking about their vital work in the lab.

Many thanks for the insights!

Sarcoma Awareness Month 2021: An Interview with Brandi Felser (The Sarcoma Foundation of America)

Sarcomas are a rare type of cancer growing in the connective tissue, i.e., cells connecting or supporting other kinds of tissues in the body. We spoke with CEO Brandi Felser of The Sarcoma Foundation of America (SFA) about the foundation, the everyday challenges that sarcoma patients face and Sarcoma Awareness Month. 

First of all, could you please tell us about The Sarcoma Foundation of America (SFA) as such, its aims, and your role within the foundation?

The three pillars of the Sarcoma Foundation of America (SFA) are: research, education and advocacy.

• Research: SFA is an advocate for increased research to find new and better therapies with which to treat patients with sarcoma. As the leading funder of research in the sarcoma community, the organization raises money to privately fund grants for sarcoma researchers. Since its inception in 2000, the Sarcoma Foundation of America has invested over USD 13 million in research; including over 200 sarcoma research grants, eight American Society of Clinical Oncologists (ASCO) Young Investigator Awards, two Advanced Clinical Research Awards (ASCO) Conquer Cancer Foundation Awards, and two ASCO Conquer Cancer Foundation Career Development Awards.
• Advocacy: SFA serves as the voice for the sarcoma community by educating legislators, federal and state agency officials, health and research communities, and the general public about the need for additional research and new therapies. SFA advocates for increased research funding for sarcoma both from the public and private sectors and works with government, for-profit and non-profit cancer organizations, and the biopharmaceutical industry to improve the level of awareness, interest, and investment in research for sarcoma.
• Education: An educated and empowered community is key in efforts to bring change to the sarcoma landscape. Education not only aids patients and caregivers in advocating for their own care, but also helps to build a group of advocates who can work on behalf of others to raise awareness and influence research and drug development activities. SFA’s advocate education and engagement initiatives include thought-provoking in-person education sessions with esteemed speakers, interactive webinars, advocate/researcher networking at national meetings, and briefings on the latest developments in sarcoma research. SFA’s education program is a comprehensive program to provide patients with information and tools needed to be a leader in the sarcoma advocacy community.

The Race to Cure Sarcoma

SFA also hosts the Race to Cure Sarcoma event series, the premier run/walk series in the United States focused on raising awareness and research funds for sarcoma. The Race to Cure Sarcoma is made up of family-friendly run/walks held in cities across the nation. More than USD 1 million each year is raised for sarcoma research through the Race to Cure Sarcoma.

Sarcoma Facts Everyone Should Know (source: The Sarcoma Foundation of America)

Why is sarcoma still considered to be the “forgotten cancer”?

Sarcoma has made significant progress over the last several years in terms of more research and therapies. However, sarcoma still suffers from inadequate investments in research funding to advance drug development, limited awareness about the disease, and limited sarcoma centers and specialists. All of these create challenges for sarcoma patients. Moreover, the rarity of the disease makes it difficult to generate research investment and awareness.

What are the everyday challenges that sarcoma patients face?

Treatment options are limited. Once a patient is diagnosed, getting treatment specific to their subtype is challenging. Sarcoma is curable by surgery (approximately 20% of the time), or by surgery with chemotherapy and/or radiation (another 30%), but about 50% of the time they are totally resistant to all of these approaches. For many subtypes, there is no therapy approved by the Food and Drug Administration (FDA). Patients suffer from limited treatment options and limited sarcoma centers to access treatment. The journey to diagnosis can be long, often taking years.

What can you tell us about pediatric sarcoma and the (unmet) needs of the young patients (and their families)?

Although still rare, sarcoma represents 15–20% of pediatric solid tumors with the most common tumor type being rhabdomyosarcoma. Risk factors for pediatric sarcoma include inherited disorders such as Li-Fraumeni syndrome, RB1 gene changes, and Neurofibromatosis type 1 (NF1), and past treatment with radiation therapy. Similar to adult sarcomas, treatment options are limited for pediatric patients. In addition, survivors of pediatric sarcoma face the challenge of lifelong health problems due to the cancer treatments that seriously affect their quality of life. These can include organ, tissue, and body function; growth and development; social and psychological adjustment; and second cancers.

Sarcoma Awareness Month (source: The Sarcoma Foundation of America)

July was Sarcoma Awareness Month: How did you perceive the awareness event, and what can we do after the actual awareness month?

Sarcoma Awareness Month is an important time for the community to come together to honor patients and survivors, remember the loved ones lost, and raise awareness about sarcoma. The sarcoma community wore yellow, engaged in educational activities, and shared stories about patient journeys and our loved ones. Thousands of members of the sarcoma community joined SFA for our National Virtual Race to Cure Sarcoma to help raise much needed funds for sarcoma research. The combined efforts of the sarcoma community were effective in educating the world about sarcoma and no doubt lifted the voice of sarcoma patients and survivors.

Our work to create change for the sarcoma community, however, cannot end there. The month of July, Sarcoma Awareness Month, is a time for the community to join forces, to unite and raise awareness about the disease. Importantly, it is also a time to unite and work toward more and better treatment options for all sarcoma patients.

But not just this month. Every month.

How and to which extent has the COVID-19 pandemic changed your work as well as the lives of sarcoma patients?

How we work as a team, in terms of not being in the office, has changed, but outside of that, mostly our advocacy and public policy focus. The pandemic made all of us re-think how we approach treating patients. Especially in sarcoma, it is important for sarcoma patients to be treated at a sarcoma center, which often means travel to that location. That became nearly impossible during the pandemic. Medical professionals and patients were forced to find ways to care for patients, and receive care, differently. This worked well in many aspects because the sarcoma community is already a very collaborative group. But it did crystalize that some of these changes should continue after the pandemic such as telemedicine, non-priority (scans, blood tests, even chemotherapy) being administered at a more local institution while being supervised by a medical professional who might be far away. We would like to see some of these changes stick. It can tremendously benefit sarcoma patients.

In terms of research funding and education, we are able to have those discussions and sessions via webinar so that actually made things easier for us and helped us to reach more people.

Many thanks for your insights!

Bladder Cancer Awareness Month 2021: An Interview with Lydia Makaroff (Fight Bladder Cancer UK)

Each May, Bladder Cancer Awareness Month is a time to increase awareness of the disease, to raise funds for bladder cancer research, as well as to focus on patient education, support, treatment and care. In order to commemorate this important awareness event on The Waiting Room, we spoke with Dr Lydia Makaroff, CEO of Fight Bladder Cancer UK.

As an introduction, please tell us a bit about Fight Bladder Cancer, i.e., its inception, current situation, and goals, as well as your own role within the charity.

Fight Bladder Cancer is a dynamic, patient-led charity. We work to ensure that everyone affected by bladder cancer – patients, carers, family and friends – has a place to come to for support, information and advice. We ensure that someone is speaking up for them when key decisions are made about policy, care, and research.

We continue to work hard delivering the legacy of Andrew Winterbottom, a determined bladder cancer patient who saw the lack of patient leadership for bladder cancer in the UK and worked with his wife to form this charity from their garden shed in 2009.

As the CEO, I am responsible for managing the day-to-day operations of the charity, guided by our board of trustees. The majority of our trustees are patients and carers, who ensure that Fight Bladder Cancer continues to be driven by insights from people directly affected by bladder cancer.

What can be done about bladder cancer, also by the patients themselves?

Finding bladder cancer early makes it much more treatable. The main symptoms of bladder cancer are blood in pee, needing to pee frequently, pain or burning when peeing, and repeated urinary tract infections. If you have one of these symptoms, it’s probably nothing serious, but you should still speak to your GP or family doctor.

Many of the symptoms of bladder cancer are the same as those experienced by people with a urinary tract infection, urinary stones, cystitis, or prostate problems. It is important to use several tests to rule out more straightforward conditions before diagnosing someone with bladder cancer.

Source: Fight Bladder Cancer UK

What does your organization do regarding bladder cancer?

Fight Bladder Cancer has a vision of a future where everyone survives bladder cancer, and lives long and well. Our mission is to lead the fight against bladder cancer, driven by patient and family insights. We support people affected by bladder cancer, advise on research, raise awareness, and advocate for changes in health policy.

In your opinion, what are the overlooked needs of patients with bladder cancer?

We have found that over half the people with bladder cancer have never heard of the disease before they were diagnosed. People with bladder cancer need to know that they are not alone – there is a whole community of other patients out there.

They need to be able to have frank conversations with their medical team about all the aspects of their life that will be affected by bladder cancer, including peeing, sex, and body image. Patients need to know what treatment options are suitable for their particular situation, sit down with their medical team to discuss their own unique preferences, and jointly make a decision about which treatment is best for them.

Source: Fight Bladder Cancer UK

Why is a bladder cancer awareness month important and what are you offering for this event?

Bladder Cancer Awareness Month is important because it raises the profile of this neglected cancer. This vital month is a platform through which everyone can hear about the symptoms of bladder cancer – blood in your pee, repeated urinary tract infections, and increased frequency or pain when weeing.

Our signature colour for awareness month is orange! Whether you bake an orange cake, arrange a vase of orange flowers, or dress up in orange and go on a Wee Walk – please share your photos on social media with the hashtag #BladderCancerAware.

Take a moment on the 31st of May to blow beautiful bubbles, capture a picture, and share it on Twitter using the hashtag #BubblesForBladderCancer and tagging us @BladderCancerUK.

For more ideas, take a look at our 31 Days of May Activity Calendar.

On a personal note, what made you want to get involved with and work for Fight Bladder Cancer?

While I was living in Belgium, Andrew Winterbottom and I worked together for many years to raise the profile of bladder cancer in Europe. When he was diagnosed with terminal cancer, he encouraged me to move to the UK and apply for the role of CEO of Fight Bladder Cancer. It has been an honour to continue his legacy, and work to improve the lives of everyone affected by bladder cancer.

Dr Makaroff, many thanks for your time and for the interview!