I’ve just read this online article and thought it might be of interest. So many women on this forum are under 50 like me and hadn’t even started the routine mammograms. I thought that this might just be because younger women were more likely to use internet forums but perhaps that’s not entirely the case.
What is shocking that mammograms are given to women younger in other countries like America and Sweden.
Perhaps I was naive but I hadn’t realised it was even an option to have one done privately. I thought there was a clinical reason for not doing them younger. After being on hormone treatment for about 25 years for endometriosis and developing a hormone receptive cancer I think I would have been a good candidate for an earlier mammogram.
dailymail.co.uk/health/article-1281130/Breast-cancer-killing-young-women-They-MUST-screened-too.html
Elinda x
Hi Elinda,Just bumping this up for you, as l think you should have mammograms at any age. But…whether its right or wrong, l was told on younger ladies it is harder to detect, due to hormone changes. A young girl l know went to the hospital with a lump, and was given an ultrasound, and some other tests, the surgeon said he couldn’t do a mammogram because of her age!
With regards to under 50’s using the forums, i really do think older people do not use the forums as much as the younger ones. I know 6 other ladies with bc all over 60, that would not use the forums, nor would they look on the internet for information or advice. Even though l have told them what a wonderful, helpful bunch of ladies you are!
Sandra x
I agree that use of Internet is possibly more familiar to the under 50’s. On the continent breast health is managed differently, too, with earlier mammogramms. My lobular cancer did not show on the mammogramm and at 45 even with early screening it would not have been picked up, my sister lives in Germany and she has an annual screen which includes US and examination. I suppose within the constraint of the Nhs that would not be possible here.
Hi, I am 49 and when I found my breast cancer there were 2 lumps, the larger one 2.4 cm and extensive spread to my lymph nodes (27 out 0f 28). My surgeon was of the opinion that a mammogram would have picked it up far sooner and at a stage where I stood a much better chance of recovering from it.
I for one would wholeheartedly vote for routine mammograms for women under 50. I have 2 daughters and don’t want them to find themselves in my position.
Gill x
Hiya,
Like Sandra mentioned, I was also told that I could not have a mammo due to my younger age and denser breasts? So I had the ultrasound. I would like to see the screening age pulled right down to even 35-40, but I should not think this will happen for many many years!
Paula
Hi
Another interseting thread, one I also feel very strongly about.
I was dx with a large tumour and some nodes at 36. Without going into a diatribe here, had I been given a mammo and u/s in addition to the physical exam at clinic a couple of years earlier when I found lumps in breast/under arm in the same places, I have no doubt my dx would have been earlier and the tumour smaller.
When I had mammo and u/s at dx there was no problem with denser breasts, think mine had lost their pertness far earlier!
I read then that ideally for women who had another family member dx at a young age, screening should start 5 years prior to that age . My younger sister and I met with a lot of ‘evidence’(in reality, NICE guideleines mainly) to support the fact that this was not necessary for her. We did not have a strong enough family history for her to be considered at more than a moderate risk, which meant earliest screening at 40. At 4 years later than my age at dx, 7 years ahead for her, she decided to opt for private yearly screening.
Interestingly when she met the consultant at her local breast clinic he did tell her he believed she should be screened, but that the issue was largely a funding one for the NHS. I agree it is unlikely to be brought down to 35-40 Paula, but like you I do wish it could be.
C
sorry but the daily wail really makes me LOL… some of the points made are just daft… eg doing even more screening in younger women because their breasts are dense… doing more screening wont make the breast less dense they still wont be able to see anything… but put many many women through the unneccessary trauma of worry about their screening and results.
most women under 50 have such dense breast tissue that routine screening wouldnt show anything up unless they actually had a presenting complaint… you dont need to have pert breasts to have dense breast tissue either…
i had never spent much time looking closely at mammogramms but now that i do look at them regularly its not just as simple as seeing a blob on the xray they have to be examined with magnifying glasses to spot the changes.
however the uk screening programme is looking at introducing screening from 47 to 73 so women should get 2 extra ‘screens’. this has to be weighed against the risk from radiation as radiation is a known cause of cancer and that giving a whole population of women mammograms from a younger age or on a more frequent basis they could be getting exposed to a further risk of developing cancer.
CofT if you were diagnosed under 40 then in scotland your sister would be offered screening from 5 years before the age you were diagnosed as a first degree relative under the age of 40 diagnosed with BC would be a moderate risk… not 100% sure what the guidance is for England been trying to find it on NICE but cant find the right bit… but generally England isnt as strictly controlled as in scotland.
actually i found it… looks like you have to be 0 and raised risk to get screened although your sis could ask about research studies going on as she could be offered screening through this from 30 to 39.
Lxx
I recently attended a conference in London called “Breast Screening in Perspective” where Prof. Michael Baum gave his views on the use of mammogrammes. Regardless of whatever age a mammogramme is offered to a woman he believes it would not save here life if she had a breast cancer. Although he is not an advocate of mammos, he certainly did challenge my views on their use. However, in the absence of a cure for breast cancer mammogrammes are the only tool we have to detect this disease early. When I say early, I mean DCIS stage 0. My bc when detected on self examination was stage 1 less than one centimetre with no node involvement, but nevertheless the lump was still invasive. I felt let down by the NHS Breast Screening Programme and let my views known to Prof. Baum. My breast cancer developed between the three year screening period and is known as an ‘interval’ cancer. If the mammogrammes used in the mobile units would have been digital instead of the old fashioned film, then my cancer may have been picked up at the DCIS stage which is almost 100% curable. I would advise all women to have a mammo every year if they can afford it, or better still, have an MRI… Do not rely on the NHS service as it will continue to let us down.
Perhaps the screening should be more flexible. I went to my GP 3 years before my diagnosis as I was having pain in the breast. She just said it was okay and probably muscular pain at the side.
I didn’t have a family history but met plenty of other risk factors: no children, started periods early, above average height, been on hormone treatment for endometriosis for 20+ years. Perhaps the cancer wasn’t there but the surgeon said it could have been there anything from 2 to 5 years.
After a gynae op I was then given HRT as I was experiencing headaches even though I still have my ovaries. In under 6 weeks I’d gone from not being able to feel any lumps in my breast (I did a check) to have a 6cm x 8cm lobular tumour that had spread to my lymph nodes. The surgeon said it was there but agreed the HRT had accelerated growth - this wasn’t surprising as I turned out to be 8/8 ER+ and PR+ and the HRT contained both.
Again, perhaps a proper breast screening before starting someone pre-50 on HRT would be good.
I think it is the way that breast problems or potential problems are dismissed so easily that worries me. I suppose it is about individualised care rather than making blanket recommendations. There is flexibility in the system but not all GPs are thorough or vigilant etc. My current GP is absolutely fantastic.
Elinda x
Hi
My comment about pertness was just a flippant one, perhaps out of place on this thread.
Just that my breast tissue is not that dense for my age, according to onc. My own cancer would have picked up at a mammo on my earlier breast-related hosp appts, but not the same as routine screening I realise.
I can see having read the previous comments that the idea of routinely screening all younger women may be ill-advised and unrealstic. But I do think doing a mammo or u/s when a problem is referred to b. clinic-even if a woman is younger-should be standard. I think where there is a familial dx before 40, immediate family members should be given the opportunity to discuss screening-even if this cannot be offered on the nhs-to make informed choices about whether to opt for private screens.
Being breast and health aware should be something to be taken seriously, not dismissed at the first point of call, which does still unfortunately happen to some younger women.
My sister has her screens done privately, by the same consultant that heads her local NHS breast clinic, moves to NHS screening at 40. Thanks for info about the 30-39 research studies, Lulu.
The team I see said there is likely to be earlier screening in place by the time those of us mindful about very young daughters in future is older.
I think your point about GPs is an important one Elinder. The GP I see is great. She listens, doesn’t make assumptions based only on statistics and is happy to seek information and get back to me if she needs more information herself-about health in general, not just bc. Several other GPs I saw at the practise shortly prior to my dx were very dismissive, and wrong in their conclusions. They were falsely reassured by an earlier breast clinic appt I’d had, and the fact that statistically it was so unlikely to be bc.
Of course GPs have an unenviable task in deciding which problems need further investigation and which don’t. No one can get it right every time, or dx without symptoms, but being dismissive-or as you say, not thorough when there are symptoms-just presents additional hurdles.
C x
Another view
I presented with a definite lump, 3 FNA and a mamogram gave the all clear and u/sound inconclusive at both appt’s 4 weeks apart. I got my diagnoses with a core biopsy. by the time delays of tests and waiting for result my 1cm innocent looking lump turned into a 8cm tumour by the the time of surgery 10 weeks later with 15/20 nodes involved.
I was 37 at the time and met plenty of other younger ladies that screening failed on. My sister a year younger than me is having yearly checks by GP as he doesn’t hold faith in mammos either but she has entered the BC now.
I personally dont agree with early mammo’s, I had another one today - I will be 5yrs come december - and still dont trust them, not even with the new digital machine at my local hospital. Mt surgeon and Onc still do very structered physical examination every 6 months - I have more faith in these.
There has been loads of media coverage and older posts on here re wasted money on screening, you never know it could go to finding the cure !!
Debbie
I can see that mammograms aren’t necessarily the solution. I think then a more flexible approach by GPs would be better.
My previous GP who didn’t check out my breast pain also told me that the amount of hormone treatment I was having for endometriosis was way outside the text book and not to complain to her if I grew two heads! Well I didn’t grow two heads just a massive tumour instead. I should add that no other option apart from hormone treatment was offered to me at that time.
Debbie, my tumour also grew rapidly. From not being able to feel anything to a 6cm x 8cm tumour in less than three months. I had a lot of delays too with biopsies etc and the consultant couldn’t feel any lymph node involvement. Within weeks I did have this and had 9 out of 17 lymph nodes with cancer detected. This is another whole issue…
Elinda x
Interesting post.
I was 43 when diagnosed with BC, my mammograme was clear, but the consultant could feel a lump and then gave me an ultrasound, this detected the lump.
I have no faith in mammograms, and continue to worry each time my mammogram is clear, as I have no faith in the results.
For me it is only the examination by the consultant that i feel confident with.
thanks
Really interesting posts- perhaps screening is not the answer, but like Elinder suggests a more flexible approach towards breast health and consultations in younger women.
fwiw I am 66 and a regular user of this and other forums.There are quite a lot of over 60s on here and at least a couple of over 70s.I do agree though that it is mostly younger women.I believe that ultrasound is much more effective at detecting tumours in denser breast tissue-it is also much more expensive than mammograms.
I was 43 when I found the lump. Mammogram and core biopsy were clear. Ultrasound showed a lump but looked like a benign cyst. Only the FNA showed anything suspicious and it was only because I have a good surgeon and radiologist did they tell me I must have surgery to get the lump out and diagnose it. Thank God they did, otherwise a year on I would still be here with it growing inside me.
I think much more publicity needs to be given to self-awareness in younger women - we should know our bodies and notice if anything is wrong. I find it staggering that some women can have an 8cm lump inside them without supposedly noticing!
I thank an article I read about Olivia Newton John promoting these new gloves to aid in self examination. The next day I was lying in bed and remembered it, did an exam and low and behold, what did I find?
Helen.
I have my first follow up mammogram next month and have no faith in it, I will push to have my breasts professionally examined at the breast clinic in addition to me poking them occasionally - unfortunately they are now full of lumps due to surgery and radiotherapy!
Hi
Helen, I absolutely agree that it is crucial women are self aware. One of the concerns I have is that being self aware and well informed is sometimes seen as being over anxious in younger women, which can work against early dx.
I’ve checked my breasts regularly since early teens. I noticed changes and other symptoms after breastfeeding and had concerns about lumps-that only I could feel. When I was referred to clinic I was examined physically,reassured and told not to be anxious or worry about pain.
When symptoms continued, GPs were certain that they were not BC related because I’d had a referral and because I was young, just breastfed two kids, etc etc.
My symptoms were put down to other causes. Because I knew something was not right I ignored the dismissive comments and exasperated tuts from some GPs, kept turning up and being referred for this and that. But I was convinced as they were so certain, that it was not bc.
My lumps did not become tangible lumps that anyone else could feel until the tissue changed and one became visible. Even then, because it was so unlikely, and because of the way it felt, the GP was ‘99.9% sure’ it was not bc, but- a thorough and sensible woman, thankfully- she did a referral for reassurance. This time I was dx with bc, ‘lumps’ in the same places as I initially felt.
This all took a very long time. I accept that even for experienced specialists, diagnosis can be difficult. What I still find hard to deal with is that I was aware, and I did keep turning up and raising concerns, and it seemed to work against me. I was fed up with my symptoms, but had believed they must be down to changes after having kids.
My hospital team are brilliant, and I trust them, but I do find it difficult to trust some GPs, and it has taken me a long time to get a sense of confidence back in knowing what is normal for the way my body feels now.
C
I was a very breast aware woman and checked my breasts on a regular basis. I had in fact worked on a contract for Astra Zeneca before moving back to Scotland and I knew all about the tamoxifen drug. However, no amount of breast aware gets you into the system. I would like to see the screening age being reduced to say age 40 in keeping with USA and Sweden. If this is not an option then women of any age who has breast concerns should be able to get access to specialist investigation. My GPs refused to refer me for specialist investigation saying my concerns were nothing to worry about (swelling, thickening and lumps under armpit) and my requests for a mammogram was refused. I tried three times over a four year period. Whilst all of these symptoms were in all breast cancer awareness leaflets as something to see your doctor about, they were not in the SIGN/NICE guidelines at the time. Guidelines are only guidelines and do not cover all the symptoms of breast cancer. GPs need to listen to the patient and use their clinical acumen/experience. This did not happen in my case. I suffered with a stage 3b breast cancer. GPs need much better education/training and women of all ages should be able to ask for specialist examination. An average GP practice will only see approximately one new case per year - as quoted to me by BCC and Macmillan. I have suffered because of the ignorance of my GPs who were not prepared to refer me. Whilst they aren’t prepared to apologise they do admit to not seeing a lot of breast cancer. NO GP should be playing with our lives. I now don’t trust GPs and if I have any concerns, I go straight to my hospital team. Fortunately, I have a good team and most of all, I trust them.
Wishing you all well.
Jeannie
jeannie… the referral criteria is a new lump in the breast or auxilla so your gp should have referred you with no questions asked
these are the scottish guidelines for referral or for management by your GP (primary care)
scan.scot.nhs.uk/idoc.ashx?docid=07c6468c-2be8-4bee-bc8a-2e7dec8a3e36&version=-1
i think aling with making women more breast aware what we really need to do is educate all the GPs that think they are somehow able to diagnose things that even the specialists cannot do with out the aid of mammograms, ultrasounds, aspirations and biopsies!
Lx
Good point Lulu
and also perhaps that even when a woman has been seen by the specialists, sometimes she needs to be returned there.