More controversy over routine mammogram screening

[river]

Dahlia
With hindsight, I'd have had a mammogram privately - we've got private cover with my husbands job - but with all the stress at the time of my Mum's surgery and chemo, I didn't get round to it. My Mum in law had lymphoma in the stomach at the same time so we had both of them going through chemo!

Now of course I know I was right to ask for it, not knowing the links between ovarian and breast cancer at the time. It was a gut feeling. Such a shame my GP at the time wasn't clued up. B***h. She's not there anymore.

I'm interested that you've had oopherectomy - have you seen the Ovary removal thread?

River

[Guest user]

My Mum died of breast cancer 22 days after my 50th birthday and I had my first routinue mamogram 6 days after that - I felt I owed it to her go ahead with it. All clear, roll forward 3 years to April 2009 mamogram lump found but by the way they now think that there was a dot on my first mammogram which is now that lump. Had lumpectomy and the results were 2.5mm tumor grade 3 ER+ 4, Progesterone strongly receptive, HER2 negative and one sentinal node out of 2 micro metastes overall NPI 5.5. Treatment 4 Fec 3 Tax (shouild have been 4 but I was so ill), firther op to clean up margins and to remove lymph nodes later this month then radiotherapy and amiridex.
But if they had investigated the dot in 2006 I might nt have needed all the treatment I have now had/having.

[cherub]

I am in agreement with Jeannie about GPs having more training and needing to be more aware. I saw 3 GPs at my practice. The first was after my diagnosis when I needed a medical certificate, he just sat there and said he was the wrong person to be talking to as he knew nothing about BC whilst I sat shaking. The second was the GP I saw every time I needed another medical certificate; he thought when I was on Herceptin it was a one a day tablet, yet at the time of my diagnosis it was never out of the news due to women going to court to get access to it. The same GP refused to give my Oncologist permission to refer me for counselling, according to him I didn't need a clinical psychologist and as I'd had most of the treatment I should "just try to get on with things". My oncologist ignored him and referred as she was so angry with his attitude (she also told me they often have problems with GPs).

The third is the woman GP in my practice, who also happens to be the wife of the second one (my own feeling is it's a conflict of interest for both to be in the same surgery). At the last appointment I had with her for a gynae problem it was quite obvious she wasn't clued up on BC, yet she claims to be a specialist in all female diseases, also the menopause. She wanted to prescribe something which I said I had been advised against using by the oncologists and she just gave me a blank look accompanied by "oh, did your oncologist really tell you that?". You couldn't make it up as they say.

[Guest user]

river

Interesting; I have a family history and was refused as well - it wouldn't happen now, hopefully ...

I had my ovaries removed because of the link with BC and OC in the fmaily and not really needing them for anything - except earrings maybe!

Have you read NICE guidelines? You may well have "qualified" for MRI when refused. Just a thought.

Others - actually not that many women are dx as a result of mammograms relatively speaking. That are many false negatives too of course. False pasitives can be coped with but false negatives are a bit different.

There has been interesting debate (rather heated actually from some quarters) on BC Pals about this report if you are interested in reading more.

[river]

mine was picked up on my first screening mammogram. I'd asked for a mammo and ovarian screening when my mum was diagnosed with ovarian cancer in 2007. 'No' said my bad tempered female GP, we don't screen under 50, and we don't offer ovarian screening. DCIS may have shown at that stage but I like to think that nothing else would have done. I've now been referred for ovarian screening too.

[Eliza]

Hello Kelley,

I was diagnosed following my first routine mammogram. I had no idea so it was a bit of a shock. I had the mammogram and then went on holiday and came home to the recall letter.

Eliza xx

[Guest user]

I would love to know how many women are diagnosed following their first routine mammogram. I was despite having no symptoms and I have heard of many women who were the same. I was found to have multifocal tumours and now have secondaries. If I'd been 6 weeks older, my mammogram would have been a year later and may well have saved my life.
Kelley

[moser]

When i found a lump in my armpit aged 46 it was found that I had 5.5cm of DCIS, and 2 cm which had become invasive. No breast lump. If i had been screened and the DCIS found i probably would not have had to have gone through all the chemo, rads hercptin and a recurrence. Bring it on for younder women!

[Guest user]

I had annual mammogram due to family history. I had no symptoms at all but at the age of 44 mammo picked up an abnormality which turned out to be a 3cm grade 2 tumour. Even the cons couldn't find the lump and needed u/s for the fine needle aspiration. I am eternally grateful for mammo as goodness knows how long it would have been before the tumour gave me symptoms.
Nicky

[Guest user]

AnneG

Just because your tumour didn't show up on mammogram 18 months earlier it does not mean that you were clear. Mammograms at best detect 80% of abnormalities, AT BEST.

For women who are BRCA mutation carriers the effectiveness can be below 25% ...

By the way, if you want a mammogram every year then ask for it, demand it of necessary but don't rely on it because they are not 100% reliable - obviously. They are also more harmful than x-rays, see B Ehrenreich's writing on this.

[Lulu34]

the numbers arent even that small really as at age 40 you have around a 1 in 200 chance of having BC... i think thats quite high and even at 30 its less than 1 in 2000... if you think about how many women of that age there is in the UK it really wouldnt be considered 'rare' perhaps less common but definitely not rare.

i think that if you are over 50 and go they may sometimes take your symptoms more seriously than younger women who are often told its to do with their cycle etc

but i think if docs referred every case for further investigations then some of those who do seriously need to be seen would be bumped down the waiting list due to people who do actually have nothing wrong with them.

Lulu x

[Guest user]

Hello
I too agree that there is a need for better GP training in relation to younger women - even if numbers are smaller the result is devastating. I'm not saying its not hideous for older women, but it's particularly cruel to see young lives and young families so affected and all for the sake of training and understanding of the issue.
monica xx

[Guest user]

Hi Lulu34

I couldn't agree more with your comments re younger women. Younger women need to have much better recognition. GPs should be referring women of all ages who have symptoms which could possibly be breast cancer. I don't think my GPs even recognised my symptoms due to how little experience they had with regards to breast cancer. I feel education and training need to be a priority. My GP also said breast cancer was rare in women under age 50. Is this something else they have to be educated in? I would hardly say over 8,000 per year and rising is rare. I know I have had to deal with the problem of being four years misdiagnosed but I cannot help but feel for younger women who have young children, are full-time working Mums, still paying a mortgage and still wanting to have an active sex life. Not to mention the financial worry. It's a tough call.

Jeannie

[Lulu34]

other countries who pay for their healthcare often do procedures more frequently or at an earlier age... eg annual smears and annual mammos from age 40 for all women in the US regardless of risk

jeanie i think better gp education is definitely a good idea... especially in relation to younger women where they often dont follow things up or pursue it because they almost believe nobody under 50 gets it.... when we know that even women in their late teens and 20s do although that is very rare.

Lxx

[Guest user]

If it wasn't that I put myself into the system for a mammogram when I reached age 50, I would most likely be dead. My GPs refused me further investigation saying that the swelling, thickening and lumps under my right armpit were the remains of a viral infection. Foolishly I trusted them.

Yes, we know that women under age 50 often have denser breasts but ultra-sound can assist with this. There are many other countries now doing mammography under 50 (USA is age 40)so why can't we? If we cannot lower the age for mammography then we need better education and training for our GPs. They wrecked my life and I know of others.

Wishing you all well.

Jeannie

[Lazydaisy1]

Soooooooooo sorry for the appalling typos will try harder!

[Lazydaisy1]

Like Cherub mine was very deep and near the ribcage / chest wall and if it had gone undetected It would proberly have been too late if left another three years . Surgeon said I was very lucky but......... had they nipped it out six years earlier rather than monitor it perhaps I would't be having rads and pills for the next five years plus all the uncetainty. For six years the monitored without letting me know!! Wheres my personal choice in that? I really would have liked to be in on the initial discovery and monitoring. In a day and age when our lives can take us in any direction especially travel these things can be pushed aside and thinking I'd never had any propblems with mammogramms in the past might have given me a false sense of 'well being' and past on itthis time.

[cherub]

Apparently my tumour was very deep in the breast close to my ribcage, so I am eternally grateful for that fibroid appearing as it made me go to the doctor.

[Guest user]

Mine was also found on my first routine screening at 50, well 50 and 8 months, last november, nothing could be felt....early stage grade 1, trace in nodes....
Maybe earlier screening, I think in America it starts at 40, not sure on other countries

[Guest user]

I was also found on routine mammogram, had first aged 49 which was clear, the second aged 52, recalled within the week for ultrasound and biopsy which resulted in diagnosis a week later of grade 2 invasive ductal cancer; I could not feel lump and neither could doctor so feel relieved it was found. I would encourage attendance at screening if offered, self-examination, increased education/awareness for women (and men) and continued research & development in early screening/detection and treatment of breast cancer.

[AnneG]

Mine was found by routine screening. It was grade 3 HER 2 positive, ER pos,PR pos. No nodes and small (12 mm). It was very deep and it would have been very large by the time a lump was palpable. There was some DCIS as well which did not show on the mammogram and was only found when the tumour was removed. I had WLE,SNB, chemo, rads and Herceptin and now on Aromasin (due to side effects of Arimidex but I'm not finding Aromasin any easier.) I was diagnosed in April 2007 and seem to be doing ok so far.

I had had a mammogram 18 months before this one because of breast pain and nothing was found then so I know it was a fast growing tumour. This concerns me as I know that eventually I will go back on to the 3 year programme and I would rather be able to continue with annual screening.

Anne

[Guest user]

I'm all for more screening, but would like to make people aware that mammograms are not the answer to everything. I found a lump as I turned 43, my mammogram, initial ultrasound, and core biopsy were all normal, it was only my fine needle biopsy which came back 'suspicious' which rang warning bells with my breast surgeon. Up till then everyone thought it was benign and it was only because my radiologist and surgeon have an 'aggressive policy' of finding out what things are (they say they're like terriers!) that they gave me a WLE to get the lump out and diagnose it - 16mm lobular invasive.

Apparently in women under 50, the breast tissue is often too dense to show cancer on mammograms, so it is more important that women are breast aware and look for changes in their breasts rather than relying on screening.

When I finish rads I will go onto the screening programme but unsurprisingly I don't have much faith in those mammograms!

Helen.

[cherub]

I was diagnosed at 45 after going to my surgery with a lump. I had a a mammo within 10 days (it was the middle of summer, so lots of people were away) then I had an appointment with a Consultant at the breast clinic the following week. I had an ultrasound and a lot of biopsy samples taken as the Consultant said he was not sure what he was dealing with.

None of the tests came back with any evidence of cancer, the surgeon said it was a fibroid which I asked to have removed, this took place 3 weeks later as a day patient. The following week I found out the fibroid was hiding a stage 3 tumour, which also turned out to be Her2+. I turn 50 a few months before my remission is up and have been told I will automatically pass into the screening programme after that.

[Guest user]

I was screened at 50 - they found high grade DCIS - I had two WLE's and radiotherapy - 2 years later a recurrence and secondaries in my spine were found. It is arguable that if the DCIS were left - maybe it would have not developed, maybe it only developed as a result of mammo and lots of other scans or surgery - who knows. As the article said - there can't really be a trial on this one.

[Guest user]

I was screened at 51 and again at 54. Nothing reported. 15 months after routine screening i had an inverted nipple subsequently dx with lobular grade 2, spread to 6 lymph nodes and HER2. Needless to say i have little faith in mammograms. From what I have read most bc is found by the woman herself and the figures say that 1,400 cases a year are found from routine screening. This doesnt seem much to me out of the 45,000 cases at least a year. Like the newspaper article says i feel that people are surviving longer because of better treatments.

[Guest user]

I was put on a family screening programme at the age of 41 because of family history and was picked up at my first mammogram. I had a grade 3 invasive lump that was hormone and HER2+. My specialist couldn't feel any lump and has said that it could have been up to 18 months before I had felt anything as it was so deep, by which time I may have had a different outcome. As it is I am having chemo, rads, herceptin and tamoxifen.

My mum found her ump when her appointment for a mammogram came through. The appointment prompted her to check and that was when she found the lump.

[Guest user]

Hi there, I was 43 when diagnosed. Too young for the screening programme so it was a lump that led to diagnosis. Being a large lady it was quite a big lump by the time I was able to find it, Then I had to wait 7 weeks to be seen by the hospital (of course that wouldn't be allowed now) and I was eventally diagnosed with a grade 3 tumour with lymph node/vascular invasion.
Amazingly, 8 years on I'm still here but have lived with secondary bc in the liver for 3 and a half years and have been on Capecitabine for 3 years.This is my third type of chemo.
The breast screening service should be brought forward to 40 at least. If I'd been screened at 40 I'd probably still have a job, a husband and a future.And the NHS would have saved thousands of pounds.
love Jackiexxx

[Guest user]

I was also found with a routine mammography, no signs of any kind, when they found it it was grade three triple negative no vascular invasion or nodes involvement. I can't have chemo because of other health issues and this type of cancer won't respond to anything else, so if it hadn't been found when it was I most probably would have had to have chemo regardless of my other health issues and if the cancer didn't kill me the chemo most probably would, so, yes, the screening should carry on and even start earlier, anyway where would the money they save go?

[Guest user]

Hi I found a lump back in Sept end of, I had my first mamogram middle of Oct, This I paid private for as my app from the hosp had still not come through, nothing shown the nurse said "Bien" good all clear basically, then just as I was leaving she told me to ask my Doctor for a ultrasound, this I did so end of Oct my appointment came through I went for this which the hosp decided also to give me more mams on that day, I was in agony, 2 days later biopsys, 9 days later results, 17th Dec Tumour grade 3 breast and removal of 22 nodes, also a very aggresive cancer!

If I had listened to my first mam results, I probably wouldn´t be here now, im 42 years old, Thank god that in my case they followed up with ultrasound!
Teresa x

[Lulu34]

i think with any type of screening you can possibly pick up a few false positives or even other problems that you hadnt anticipated but like any screening tool its then up to the patient what to do... but sometimes i think doctors forget to give patients the full information to make an informed decision.

it could be argued that some of the DCIS removed may never have turned into cancer but they dont know that for sure and for some they would rather remove just in case it turned into cancer than leave it incase it didnt. also even on mammo if it shows suspicions it the biopsy that makes the diagnosis but like anything thats not 100% accurate as the biopsy may miss a higher grade dcis or invasive tumour from the sample.

you often hear of people saying i was told i had some dcis but when they removed it the pathology showed invasive or their low grade dcis turned out to be high grade etc or even benign abnormalities were occluding cancerous lesions on the mammo.

i think for many people they would rather remove the risk... also if you look at all the women who have or want to preventative mastectomy even with no actual disease its the threat of it that makes them decide on this radical treatment.

not sure that routine screening would be of much help as premenopausal breasts tend to be denser and less easy to see abnormalities on mammo, but ultra sounding all women between 40 and 50 would be too labour intensive (and probably not of a financial benefit either).

however after getting my first tumour grade 1 at age 37 i was on routine mammos and this showed up an abnormality which on mammo appeared to be a cyst but was a triple neg grade 3 tumour.

Lulu

[Guest user]

Hi, I wasn't given a routine mammogram as our surgery would not add me to their list until the October after I was 50. My birthday is the 24th December, so I woulkd not have even been on their list for calling for mammogram until I was almost 52!! Ludicrous.

"Luckily"? I found a lump in August last year, when I was 50 and went to my GP who was reluctant to refer me, and then did as I asked her to but only as a routine appointment 4 weeks later.

I am convinced my lump was getting bigger during this time and when I had mammogram was 3.5 inches, triple negative , I also had DCIS and vascular invasion.

I have no way of knowing how long I had had this lump as had no screening. I think given the high incidence in this day and age of younger women being diagnosed, the screening programme should definately reduce the age for routine mammograms. The problem is what age would be acceptable. 40, 35?

I hope that the powers that be will consider this dilemma and come up with an acceptable solution soon.

Take care, love and hugs, debbie. xx

[Guest user]

Hi

Yes better screening for all.

I was 45 when I found a small lump. I had the mammagram, ultrasound and fine needle and they all can back clear!!!!! 8 months later that lump was grade 2 bc. I had to have a mx and 16 nodes removed. I also had no other symptoms.

Jane xx

[Daisy_do]

Keep believing - mine was routine screening 2nd time around and I was found to have DCIS and also Invasive cancer - so was caught before lump or dimpled breast or nipple discharge etc.

The important thing is for the screening to be done and even bring the age down - no one can argue on screening but I think woman would like to decide on their treatment options rather than being told treatment without options. Given all the facts I chose mastectomy and am now on Tamoxifen so didnt have the chemo or rads and really feel for the ladies that have.

Screening should be left alone other than improve the system and allow a more available service. Perhaps a walk in service for woman would show a lot more problems earlier. We all know the Government wont use money for that!

The figures dont mean much to someone going through BC treatment but perhaps more info on figures and stats would be an eye opener.

Thank you topsymo for this info.

Dx

[topsymo]

In today's Times, the latest report of the UK breast screening programme is again being directly criticised by the highly regarded Cochrane Centre in Copenhagen.

According to the report, 1.7 million women over 50 are screened each year and in 2007, 21,000 women aged 50 to 69 were diagnosed with BC. But Cochrane says that of these,a third could be "unnecessary" diagnoses of benign DCIS. sic "each year in the UK, 7,000 women receive an unnecessary breast cancer diagnosis and unnecessary breast cancer treatment because of over-diagnosis in the NHS BC screening programme"........and so on and so on.

I was picked up by routine screening & found to have an aggressive Grade 3, stage 3 BC. I had NO symptoms, no lump, no changes to my breasts etc etc . I have subsequently had the 'full works' treatment and am now 18 months post-diagnosis and on Arimidex.
I just wonder how many other people there are like me who were apparently symptomless before being picked up by mammogram- but who were found to have BC with node involvement, (rather than DCIS - which might have proved to be benign)

I have to believe that routine screening has saved my life BUT.....I have only come across one other person on the forums whose diagnosis etc was like mine & who was picked up by routine screening. Almost everyone seems to have had symptoms for which they sought help. Is my experience really that unusual - or is it just that the majority of people on the forums are younger women than me (65 at diagnosis) and thus not yet in the routine screening programme?
I would really welcome other people's views on this.