There seems to be a high proportion of younger women on the forum and indeed when I was having treatment I met a lot of lovely young people who had had the lot thrown at them.
Does this not tell us that screening should star at a much younger age.
Tina
x
As a younger woman myself (although 37), I was totally astounded at how many ‘young uns’ get a bc dx, I would like there to be more info given out in schools etc… as I believed as I’m sure many do that bc is either heredity or in older women. They say the reason they dont screen younger women is because the breast tissue is much denser, therefore its not easy to detect changes.
But I certainly think making young girls more aware about their bodies, and the signs to look out for, without scaring them , would be a big step forward, I work in a school and the boys are shown how to check their testicles what signs to look out for, what do the girls get? Advice on how not to get preggers!
X
This forum might be a bit skewed by how many people feel comfortable using a forum. I suspect (sorry for being ageist!) that younger women will come across the forums more readily than, say, someone in her 70s who doesn’t generally use the computer much.
81% of breast cancer cases are in women over 50. (CRUK)
So unless you are a high risk young woman(BRCA etc) then additional screening wouldn’t be worthwhile.
I think that although additional screening would not be worthwhile, making younger women more aware that it can happen to them and to be more breast aware is the way forward. I believe that there have been campaigns to try to achieve this aim (Coppafeel for instance)
I was 41 on diagnosis and I honestly thought that breast cancer was something that happened to overweight post menapausal women. Although I was aware of what to look for, I never did because “it wouldn’t happen to me” I now try to make it my mission to educate all my friends and colleagues on the importance of being breast aware. I work in an all male environment now and the men often ask me about what to look for etc so husbands/partners can become more aware as well.
I agree with CM that this forum is very skewed to the younger end.
I’m 45 and whilst I was having my chemo and rads I only came across one woman who was younger than me and having treatment for BC. Usually I was at least 20 years younger than everyone else.
The only time I came across more younger women was at my look Good Feel Better session.
Funnily enough last night I was at our local Pizza Express and spotted a woman in an obvious “chemo hat” so I went over for a chat. It turned out she’s half way through FEC-T. We had a chat and a laugh and she was very impressed at my 3 1/2 months of hair growth! I think she was probably younger than me although it’s hard to judge ages without hair to go by.
If you’re reading this and were the lady accosted by a very short haired woman in the Bedford Pizza Express last night, helloooo!
Jane xxx
The lady in front of me in Asda last night had a youngish OH and a lovely young teenager (12-14) with her, as well as headscarf and lymphy-sleeve. OH spotted my sleeve but didn’t say anything. She can’t have been over 40.
I think the problem with denser breasts is real, but they do have other tools they could use, say from 35 or 40, it’s really scary how many I know diagnosed under 55. If they can do it for BRACA… because most of us do not have an affected relative. Although obviously those who do will (hopefully) already be aware and doing the checks etc.
I agree that most people think bc only realy affects women over 50. I was 32 at dx and had absolutely no family history. I thought it only affected younger women who were genetically predisposed to it! Even if 81% of sufferers are 50+, that still leaves nearly 20% who are younger and many of these are in their 20’s and 30’s. Given the high number of diagnoses every year in the uk (around 50,000), 19% is still alot of women. I have met lots of younger ladies on here and at my local hospital (one had a mx aged 24- no family history) and even my medical team have admitted its becoming increasingly common. Sadly us younger women tend to be overrepresented in the mortality rates, as bc can be more aggressive in young women and also, it tends to be more advanced on diagnosis due to no screening etc…
I dont know what would be the best way forward in terms of raising awareness but it defo needs to be done. BC is still described as an older womans problem in the media. Even some gp’s seem ignorant to the fact that young women can be affected. Screening probably isnt the answer but surely some simple steps could raise awareness and detect problems earlier in some cases? Maybe docs could start checking breasts in smear appointments? What about bringing back breast checks in the post natal check? I defo agree more needs to be done in schools. As a teacher of 6th formers, I had bcc volunteers in to chat to our students a few years back. Little did I know what was round the corner…
Tina x
Don’t forget there are three main aspects to whether or not screening is worthwhile.
All these three combine for the NHS to work out when to screen and how.
Most people on here will have either endured the diagnostic process, or watched a loved one endure it. I certainly would not like to inflict biopsies on people if there is no need.
Paul.
I certainly didn’t enjoy my biopsies, but would have them any day, even for something that turned out to be benign, rather than leave something untreated. I had benign breast disease (it turned out) and had first biopsy aged 35 having being picked up for lumps and bumps by an occupational health well woman check. Delighted it was negative, but if it hadn’t alerted me to the possibility of bc, I might not have responded as quickly as I did now (aged 47) when I did have bc and it was caught at grade 1, stage 1. If it had turned out not to be, wouldn’t have begrudged having mammo, ultrasound and biospy at all.
That said I know that mammos don’t work so well on younger women because of denser breast tissue so maybe its more about making it clear to women and health professionals that young women get bc too.
Please don’t get me wrong - All I am saying is that any screening has to have benefits to be worth doing. It has to balance actual positive detections against false positives.
Paul.
As a four year misdiagnosed lady and having had absolutely everything flung at me because my cancer was at a much more advanced stage that it could have been, I would welcome earlier screening. Many other countries are screening at an earlier age. I quote from a paper I received today “When compared to other European countries and in particular the Nordic countries, 5 year survival in Scotland following a diagnosis is below the average”. If it is seen that screening at an earlier age is not worthwhile (although I have my doubts here) what about offering younger women the opportunity to self-refer. Women over age 70 are allowed to self-refer so why not younger women? Self-referrals would not cost nearly as much as screening. I used to harp on about better GP training but having travelled this journey for over 5 years now I know how little interest I have had with regards to my campaign for better GP training. Whatever, younger women need better recognition and easier access to further investigation. I’ve no idea how much my treatment (surgery, chemo, radiotherapy, tamoxifen, femara, psychologist, benefits etc) will have cost but had my cancer been caught when I first presented concerns I may have needed only surgery and radiotherapy, would have returned to work and not been psychologically damaged.
I think some younger women are getting a raw deal.
Jeannie
Well said Jeannie, you are absolutely right. Good luck with the treatment xx
I think self referral has the ptoential to be more useful than screening, but do have a concern about overloading the clinics. open self referral and I suspect many ladies would bypass GP completely.
Maybe a “three strikes” type system? something like if a patient presents at their GP a certain number of times and are not sucessfully treated they are automatically referred?
Paul.
I have a friend who is a senior mammographer. She said that the screening is kept to ladies more likely to be in the demographic for BC because of the dangers of regular exposure to the radiation of the mammo itself. That radiation can cause cancer - that’s why radiographers of all persuasions stay behind a lead screen as the x-rays are being emitted. She says that beyond age 50+, the likelihood of having BC means that the benefit of detection outweighs the possible risk.
That’s and the denser breast tissue, of course, making Dx allegedly more difficult.
Although, I had a mammo shortly after finishing breast feeding (and it was bloo*y painful with a milky boob!) but my fibroadenoma was picked up VERY easily and they knew straightaway that it was something solid that needed to come out and was not a cyst.