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Some Cancers are more “fashionable” than others

91 replies

Mittens67 · 31/12/2024 07:41

Society consistently appalls me but one of the most depressing things I have come across is how some cancers receive more media coverage than others and so get more donations and better charitable funding. For all I know this also affects nhs funding too because the wealthier charities can afford lobbyists to drive political decisions and policy.
Even the bloody coloured ribbons are divisive. Breast cancer gets pretty pink whilst melanoma gets dull black for christs sake. Who wants to wear black to promote cancer?
Pancreatic cancer which is very challenging to treat gets very little coverage compared to breast cancer or testicular cancer. Are balls and boobs more promotable because both are important to men and as we all know what matters to men is still what drives the world.
Cancer is shite and any help is of course welcome but this popularity contest disgusts me.

OP posts:
Vinorosso74 · 31/12/2024 11:22

@Salacia I find all the future developments of cancer treatment very interesting. Until I was on the cancer treatment wheel, I was quite ignorant about all the different types of treatment different cancers and subtypes of those cancers.

Vinvertebrate · 31/12/2024 11:30

I don’t think of it as “fashionable” so much as marveling over how much a determined campaign can achieve. I have had bowel cancer and will more than likely get it again because of a genetic fault, but there was very little UK campaigning on behalf of bowel cancer patients - they had a brown ribbon FGS! Deborah James campaigned tirelessly and although I found some aspects of the narrative a bit lacking (e.g. the difference in care between a patient in the Marsden with a wealthy husband, accessing private treatment on top, versus someone receiving standard NHS treatment from a DGH, for example), I absolutely take my hat off to her for the focus she brought to bowel cancer in younger people, her willingness to talk about poo (!) and the phenomenal amount of money she raised at the end. What an amazing legacy for her family.

Salacia · 31/12/2024 11:32

Vinorosso74 · 31/12/2024 11:22

@Salacia I find all the future developments of cancer treatment very interesting. Until I was on the cancer treatment wheel, I was quite ignorant about all the different types of treatment different cancers and subtypes of those cancers.

It would be great if there was more public awareness into how cancers are diagnosed - what’s happening in the lab and what the public don’t see. You see it on here a fair amount where people are upset how long a biopsy is taking to come back. I one hundred percent get it and know how scary it is waiting for results but I think if patients were made aware that the tissue needs to be prepared, examined under the microscope, potentially be reviewed by multiple doctors, have extra special tests and stains applied and potentially have to have it’s DNA sequences it might help set realistic expectations and reassurance that it’s taking time to make sure the diagnosis is as accurate as possible (especially important when it comes to therapies). Obviously a working diagnosis can be given and like the rest of the NHS resources and staff are stretched incredibly thinly which can cause delays but it’s also because a lot of work goes into it. Unfortunately even some doctors are a bit oblivious as to how long a diagnostic process can take - especially if it’s something a bit unusual.

Interested in this thread?

Then you might like threads about this subject:

peacockbluefeather · 31/12/2024 11:38

Vinvertebrate · 31/12/2024 08:57

What I find quite worrying is that there seems to be a stronger narrative now that all cancer is an impact of lifestyle. I’ve seen it very often on here and definitely amongst younger people. Obviously being healthy is good but being healthy doesn’t mean you won’t get cancer.

This is absolutely true. I have a genetic mutation (Lynch syndrome) that wildly increases my risk of bowel, endometrial and ovarian cancers. Ultimately, I will need a hysterectomy, and have already lost most of my large bowel (and some small bowel) to cancer. I had PIGD IVF to conceive DS because I didn’t want to risk passing the gene on. People literally boggle when I tell them, because they want to believe cancer only happens to those who take lifestyle risks.

The youngest person I know with bowel cancer is 17. Hardly time enough to establish any meaningful risk factors!

Even so, I have read recently that rates of bowel cancer in 15-24 year olds have increased by 266% over the last thirty years.

EmeraldsandRubies · 31/12/2024 11:44

When I was diagnosed with Non Hodgkin Lymphoma at 44, I wished I had been diagnosed with breast cancer.

I was treated in hematology. Mainly with men. No access to any facilities like help with a wig or makeup (I lost my hair too) or dedicated support from charities that understood. The chemo made me infertile for example which was tough and I'd have liked to talk to someone about that. Being so isolated just made a hard situation harder.

I have now been in remission for many years and am so very grateful for it.

A friend a similar age had breast cancer and even now is supported by a charity called Future Dreams. She can pop in for workshops or massages. The resources for breast cancer seem huge and the support is just massive. So I do agree that there are fashionable cancers.

Cancer is of course hideous. I lost my sister to ovarian cancer and she also felt unsupported. Ovarian cancer is the poor sister of breast cancer.

CatherinedeBourgh · 31/12/2024 11:49

It actually extends all the way to clinical treatment, it's a lot easier to get funding to research diagnostic tools or new drugs for fashionable cancers than for unfashionable ones.

Some of it is to do with the size of the market, but it goes well beyond that.

taxguru · 31/12/2024 11:51

I think the "popularity" aspects affects healthcare professionals too. They seem very keen to refer for some kinds of conditions that "may be" common cancers, but are pretty much blind to the less common cancers.

My OH was going to his GP for two years, multiple appointments, before they finally twigged it may be cancer (a very rare cancer that wouldn't normally affect someone of his age and ethnicity!). Time and time again he was fobbed off. But once he got a diagnosis, it was blatantly obvious that all his symptoms put together pointed to his particular cancer. GPs missed it completely because it wasn't common and he didn't fit the "profile". They should have noticed he'd literally never been to the GP for about 20 years beforehand so he wasn't a "regular" so they should have taken a bit more notice!

Whereas when I found a tiny lump, I was referred almost immediately for a mammogram, biopsy, etc - literally all tests done and results shared with me within 2 weeks of the GP appointment. That's because they obviously had more awareness of it and the referral/testing regime was streamlined.

CatherinedeBourgh · 31/12/2024 11:52

Salacia · 31/12/2024 09:43

Sorry about your mum. Regarding there not being advancement for decades it’s only relatively recently that huge advances have been made in cancer genetics - in terms of understanding more about cancer biology and developing technology that lets us do that in a practical way that works for a real life patient/health service rather than a purely academic context.

Increasingly we’re diagnosing (and hopefully treating!) cancers by their genetic profile and we’re learning more and more about which genes to target as potential cures. Unfortunately this obviously does take time and most of the genetic therapy treatments I can think of off the top of my head are in more common cancers (lung, melanoma etc) but that’s because we already knew more about how those tumours develop and spread, there are more cases so more patients and material available for research, the charities tend to be bigger as people tend to donate towards causes that have affected their own life (I can think of 4 people in my social circle who have had bowel cancer for example but I can’t think of anyone indirectly know who has adrenal cancer). That framework was there to easily integrate genetic findings.

I’m not saying this will happen overnight. And I don’t believe there will ever be a ‘cure’ for all cancer as it’s too biologically complex. And sadly, some people will always be unlucky. But as somebody working in this area I’m optimistic.

Part of the reason that the more recent therapies are mostly for common cancers is that the cost of clinical trials increases exponentially with the rarity of the cancer - if it's harder to recruit patients the length of the trial and its cost is much higher!

Hopefully over time as more data gets gathered in the primary indications, use can be extended to some secondary indications.

taxguru · 31/12/2024 11:54

I think even with a diagnosis, the oncology/haematology depts can seem unprepared and illinformed re treatment etc for less common cancers. When my husband was discussing his chemotherapy with his consultant, he asked whether he'd lose his hair. The consultant didn't know! The specialist cancer nurse assigned didn't know! She went off to google it! Something so fundamental and they hadn't a clue.

itsgettingweird · 31/12/2024 11:55

I know what you're saying and understand it but I agree with others I think it's often because some cancers you can promote signs to look out for.

Some you can't. They often have a much lower survival rate as well.

My mum had peritoneal cancer. She found out because she had a lump in her neck. She didn't suffer any real issues with her stomach until it was killing her rather than growing in her iyswim?

It's not really a treatable cancer either. Most patients don't know they have it until it's too late and it's spread.

I don't think that should affect core funding as such because we do r know other cancers won't become more curable with research.

Vinorosso74 · 31/12/2024 12:00

There is a lot more support across cancers now but it's knowing where to find it.
The Macmillan information manager at my hospital is fantastic and signposts people to things. They also organise various support things for people with all cancers. I had my radiotherapy at a different, bigger, hospital and beforehand received a call from one of the Macmillan team there but they were nowhere near as well informed.
With regards help on make up/appearance, these people do workshops. Not used them myself.
https://lookgoodfeelbetter.co.uk/

A leading cancer support charity - Look Good Feel Better

We Run Confidence Boosting Workshops To Help Manage The Side Effects Of Cancer Treatment. We Provide Emotional Support During Cancer Treatment. Volunteer Or Fundraise To Help Us. Group Sessions. Fundraising Events. Charity Number: 1031728.

https://lookgoodfeelbetter.co.uk

Vinvertebrate · 31/12/2024 12:05

peacockbluefeather · 31/12/2024 11:38

Even so, I have read recently that rates of bowel cancer in 15-24 year olds have increased by 266% over the last thirty years.

Again, I suspect the cause will be environmental or genetic (or a mixture of both) rather than lifestyle-related.

Anecdotally, it appears that “de novo” genetic mutations are on the increase (ie bowel cancer with a genetic defect cause, but without a family history). That’s a problem because NHS screening is based on the number of relatives who developed that type of cancer, and means that (as ever) the relevant tests must be pushed for by a patient who develops that cancer unusually early. Had I not done this, I would never have known that I had Lynch syndrome and would have had a 50% chance of passing it on to my children.

Kirbert2 · 31/12/2024 12:08

My 9 year old had non Hodgkin’s lymphoma. A type called burkitts lymphoma which I’d never heard of before. It’s the most fastest growing cancer a human can get, it can double in size within 48 hours, it roughly takes breast cancer around 2 weeks to double in size as a comparison.

There's a 10% chance it will come back. If it comes back, the odds aren’t in his favour because the funding isn’t there so the research isn’t there and they have little idea what to do with relapsed burkitts.

It’s a terrifying thought no matter how low the risk may be. Someone’s child will be in that 10% and I just have to hope that it isn’t going to be mine.

More research needs to go into childhood cancer including the treatments that are largely meant for adult bodies and can cause all kinds of complications for children, some which are permanent.

25Penguin · 01/01/2025 08:39

Yes @Mittens67 it was your post and others on here making out breast cancer is nothing and that we have it easy and everyone survives. Well tell that to a 6 year old girl who is facing her second year without her Mum. I am sick of people treating breast cancer like it's nothing and being disrespectful to those of us who had it, the vast majority of here who are Mums with kids and like most cancers if it comes back it's at stage 4 and prospects are bleak. The younger you get it the worse the outcome. Knock yourself out and do the treatment for a free massage if you think it's easy. I had no free massages, no free wigs and no free makeup, wigs and makeup are open to all as is counselling. Well wigs is noone in my area. I also don't hate men, and my husband and many other men were wonderful during my treatment because they are kind not because they like breasts. Breast cancer was the biggest killer of women for years, think still is in my age group so don't make out it's cosmetic. I left MN because of this thread and the lack of empathy but there are lots of other nice people here. I won't waste my energy any more feeding threads like this. But many people with cancer are fed up of these threads and report them and MN do nothing. The chat section used to be a pleasant place but has turned into aibu but all my will do is move them to general health which is were the support threads are so that is worse. You don't need to attack other cancer patients to ask for support or make out breast cancer is lucky, especially those who have not experienced it themselves.

Snowmanscarf · 01/01/2025 09:23

I think you misunderstand what op means. She’s referring to the publicity and marketing, not the actual cancer being fashionable. Ie. Breast cancer gets alot of media coverage and campaigns, whilst others are never heard of.

Mittens67 · 01/01/2025 10:35

25Penguin · 01/01/2025 08:39

Yes @Mittens67 it was your post and others on here making out breast cancer is nothing and that we have it easy and everyone survives. Well tell that to a 6 year old girl who is facing her second year without her Mum. I am sick of people treating breast cancer like it's nothing and being disrespectful to those of us who had it, the vast majority of here who are Mums with kids and like most cancers if it comes back it's at stage 4 and prospects are bleak. The younger you get it the worse the outcome. Knock yourself out and do the treatment for a free massage if you think it's easy. I had no free massages, no free wigs and no free makeup, wigs and makeup are open to all as is counselling. Well wigs is noone in my area. I also don't hate men, and my husband and many other men were wonderful during my treatment because they are kind not because they like breasts. Breast cancer was the biggest killer of women for years, think still is in my age group so don't make out it's cosmetic. I left MN because of this thread and the lack of empathy but there are lots of other nice people here. I won't waste my energy any more feeding threads like this. But many people with cancer are fed up of these threads and report them and MN do nothing. The chat section used to be a pleasant place but has turned into aibu but all my will do is move them to general health which is were the support threads are so that is worse. You don't need to attack other cancer patients to ask for support or make out breast cancer is lucky, especially those who have not experienced it themselves.

Edited

You really are reading things in my post that are simply not there.
As someone with stage 4 cancer myself I understand that extreme stress can make people hyper vigilant but you are completely incorrect in your understanding in this instance as I and others have tried to explain.
I won’t keep trying anymore because it seems you can’t accept this so that is your choice.

OP posts:
peacockbluefeather · 01/01/2025 12:02

Vinvertebrate · 31/12/2024 12:05

Again, I suspect the cause will be environmental or genetic (or a mixture of both) rather than lifestyle-related.

Anecdotally, it appears that “de novo” genetic mutations are on the increase (ie bowel cancer with a genetic defect cause, but without a family history). That’s a problem because NHS screening is based on the number of relatives who developed that type of cancer, and means that (as ever) the relevant tests must be pushed for by a patient who develops that cancer unusually early. Had I not done this, I would never have known that I had Lynch syndrome and would have had a 50% chance of passing it on to my children.

"Crucially, the new study is the first to track a rise in early-onset bowel cancer outside high-income western countries.

In the paper, the researchers note that, in many of the newly identified countries, increases in early-onset bowel cancer coincide with or follow on from periods of economic development. That suggests they could be linked to rapid changes in lifestyle and diet."

Bowel cancer rates rising in younger adults around the world - Cancer Research UK - Cancer News

MargaretThursday · 01/01/2025 12:33

It's not just cancers that some things get more attention than others. It's generally medical conditions. If you are connected closely with someone with one of the conditions you can feel that it is more important/more people have it etc.

But some things are less easy to market - and dare I say it, less important.

How many of you know someone with a limb deficiency? You know everyone has a story about their great uncle Henry who was missing his hand and still played the accordion and never stopped doing anything.
I know that from when dd was born without her hand, because everyone told us their own stories. It wasn't particularly helpful and definitely wasn't comforting - but they did mean well.

But they don't know why she was born like that. They know around 60 children a year a born with some sort of limb deficiency, which can be anything from missing an end of a finger through to all four limbs.
There are theories - sometimes presented as fact, but they are still theories.
Less than 1% have a known reason, normally genetic, and they (plus drugs related eg thalidomide) effect more than just one limb.
I'd love to know the reason, just for my own peace of mind, and also with the aim of stopping future children from being born like this.

There must be more to it though, because girl:boy ratio is 2:1 as is it effecting the upper rather than lower limbs, left rather than right and also the most common is between the elbow and wrist. So there must be more to it than either of the main theories which should by all considerations have no difference between any of these.

However it isn't life threatening, and, as disabilities go, it's a pretty minor one. So naturally research into it is low priority. And I agree with that.
I'd far rather the research money goes into meningitis, for example, which can cause amputations and worse.

Equally well, far more research goes into leg prosthetics - which are pretty good as far as operations go. Arm ones are heavy, clumpy, not good at fine motor movement - but look fairly good.
But I can see the logic here. Most, certainly most congenital, upper-limb amputees, choose not to use a prosthetic. They cause as many issues as they solve. Dd's used various ones over the years, but never consistently. And the 3-D printed ones that hit the news, I honestly have never known a child continue wearing them after the first few days.
Of all the children I know, I know one who has always consistently worn a prosthetic, but that's I think it, and they haven't gone for the top of the range myoelectric one, but a cheaper (and much lighter one).

But the lower-limb prosthetics are used extensively. You will, I can confidently say, have walked past someone who is using one and not realised. They don't look very good, so they'll have had long trousers on, but they operate pretty well - and are much more necessary for day to day life.
So much as I would love for them to produce an arm prosthetic that is light, can do fine motor control and is easy to operate, I can see that the focus is more important on other things.

Now it's not always true that the right things get the money. It tends to be things that are easier to market, but also it sometimes takes someone to bring a campaign.

The reason why children have functional prosthetics available on the NHS is because someone campaigned back in the 70s for their child. Before that all a child had available was a cosmetic one or a hook.

So if you have a medical cause close to your heart, then why not look into campaigning for it? Lobby the government for funding for that specific need.
That's the way things will get moving.

tothelefttotheleft · 01/01/2025 22:09

@Kirbert2

Are you sure that breast cancer takes roughly two weeks to double in size?

There are many forms of breast cancer ( 12 I think) and some are much more aggressive than others?

I had triple negative which is grade 3. Considered very aggressive but in the 45 days I waited for treatment it didn't double in size.

GETTINGLIKEMYMOTHER · 01/01/2025 22:19

Maybe we’re unusual, but we’ve lost 4 friends to prostate cancer, none to breast cancer. But I read and hear far more about breast cancer than prostate.

Kirbert2 · 01/01/2025 22:43

tothelefttotheleft · 01/01/2025 22:09

@Kirbert2

Are you sure that breast cancer takes roughly two weeks to double in size?

There are many forms of breast cancer ( 12 I think) and some are much more aggressive than others?

I had triple negative which is grade 3. Considered very aggressive but in the 45 days I waited for treatment it didn't double in size.

It's what I was told by my son's oncologist to show just how aggressive burkitts lymphoma is. To be fair, I don't remember the exact wording but she definitely said breast cancer and 2 weeks, maybe it was 'some' breast cancers rather than simply breast cancer as a whole.

He started hyper hydration and steroids immediately. Even before it was fully confirmed it was burkitts, it was just highly suspected given that it was in the lymph nodes in his bowel.

Amybelle88 · 01/01/2025 22:49

I had pancreatic cancer and was very lucky to beat it 8 years ago,

I couldn't agree more that it doesn't get anywhere near as much coverage as it needs.

labtest57 · 01/01/2025 22:53

IDoLikeToBeByTheSea · 31/12/2024 08:16

Only approx 2% of cancer research funding is allocated to childhood cancers. It’s disgusting.

Sometimes even less. I belonged to a panel of mothers whose children had childhood cancer. We advised CRUK on the setting up of their Kids and Teens division so people could donate directly to childhood cancer research. I've never seen this widely advertised and am not even sure if it still exists as this was years ago.

MilitantFawcett · 01/01/2025 22:57

EmeraldsandRubies · 31/12/2024 11:44

When I was diagnosed with Non Hodgkin Lymphoma at 44, I wished I had been diagnosed with breast cancer.

I was treated in hematology. Mainly with men. No access to any facilities like help with a wig or makeup (I lost my hair too) or dedicated support from charities that understood. The chemo made me infertile for example which was tough and I'd have liked to talk to someone about that. Being so isolated just made a hard situation harder.

I have now been in remission for many years and am so very grateful for it.

A friend a similar age had breast cancer and even now is supported by a charity called Future Dreams. She can pop in for workshops or massages. The resources for breast cancer seem huge and the support is just massive. So I do agree that there are fashionable cancers.

Cancer is of course hideous. I lost my sister to ovarian cancer and she also felt unsupported. Ovarian cancer is the poor sister of breast cancer.

Absolutely this. My DP was diagnosed with NHL several years ago and got very little by way of info. I was diagnosed with one of the ‘fashionable’ cancers and have been inundated with helplines, charity info, and support. It seems odd especially as my cancer is curable but he will have his for life.

labtest57 · 01/01/2025 22:59

NigelHarmansNewWife · 31/12/2024 08:27

Why do you think this is disgusting? 84% of children with childhood cancers survive for over 5 years.

Funding and awareness campaigns are concentrated on cancers which are treatable if discovered early.

Even some forms of pancreatic cancer can be survivable if discovered early enough. Sadly that is rarely the case and it can be devastatingly quick from diagnosis to death.

One of the most common childhood cancers, acute lymphoblastic leukaemia, has a treatment protocol lasting 2 and a half years for girls or 3 and a half for boys. A child could relapse a year or two after treatment and still be in the 5 year survival statistic. Leukaemia also brings up the average. If you take leukaemia out of the equation, the 5 year survival rate for childhood cancer is a lot lower than 84%. DIPG is still fatal, and bone cancer and neuroblastoma rates aren't that great either.