Anyone else feel let down by mammogram?

There seem to be very few postings about failed mammograms on this site but I would like to raise some issues. I have always attended regularly for Mammograms so was not particularly concerned when I felt a lump not all that long after my last mammogram - I’ve had a few benign ones over the years. However it seemed to grow at an alarming rate so went to GP and was referred immediately to Breast clinic.Result 3.6 cm invasive lobular cancer. I was assured any failed mammograms were looked into and the information fed back - still has not happened. Having done a bit of research I find I was actually at risk for several reasons. Apparently small breasts - are hard to read, as are breasts with previous surgery. Both of these apply to me. In addition I have had many many chest X-rays for my lungs and I read that this is also a cause of BC. Why on earth does someone not point things like this out to you? In my view a much more individualised approach to screening would be beneficial - ultrasound for tricky breasts eg or at least a warning that you are at increased risk of having lumps missed - instead of the bog standard letter telling you all is well. I was not at all impressed at the screening - first girl could not manage it and fetched someone else who obviously did not do any better. Anyone else with bad experiences?

Hi SarCath

Really sorry to hear to you are in the boat with the rest of us … it’s a good job that you have been so diligent at checking.

I first found my lump last New year’s Eve and although it was very big (3cm) there was no biopsy or ultasound. Like you I checked and then went back in November and now have a problem 4cm - Medullary (I never spell it right) cancer and have just had a partial masectomy with radio and chemo to come.

My view is … at least it’s been found now and something is being done about it before it’s too late! Life isn’t perfect and you just have to get on with what’s landed in your lap … turning back clocks is never an option …

Good luck with your treatment - thank goodness you have been keeping an eye on things - well done!

FizBix

Hi Sarcath, I found a lump in July, saw the GP and was referred for a mammogram. I was told that the mammgram showed nothing except dense breast tissue.
I told the radiographer that there was definitely a lump - he then examined me, did an ultrasound which immediately brought it up on the screen. His next words were ‘I have to put a needle in that’ . The core biopsy revealed a 1.5cm invasive ductal carcinoma. A lumpectomy and two further re-excisions later I am now half way through six doses of FEC., thankfully clear lymph nodes.
I have asked the oncologist why the mammogram did not show up the lump, and was told that in 10-15% of cases tumours are not picked up.
My breasts are not particularly big, and the lump was low in my cleavage so I wonder if that part of my breast didn’t fit within the screening plates for a clear scan.
Needless to say I will not be trusting any future mammograms and intend asking for an ultra sound every time too. I don’t know if they’ll do this, but I will consider paying for it if necessary. The onc did say though, that as I get older my breasts will become less dense, and the mammogram will be more accurate. Not enough to inspire confidence…

I had the mammogram after finding the lump and was told I’m pleased to tell you your mammogram was clear. At which I asked how about this great big lump then? I’d come for the results of my biopsies, which were not forthcoming. When the lump was removed it was cancer, but the mammogram, my biopsies and clinical exam came out benign.

Yes, I haven’t had a mammogram since

Mole

Hi Sarcath
I understand that you have been dx with invasive lobular? My surgeon told me that lobular often doesn’t show up on mammos (mine didn’t) because it mimics the breast tissue. They caught mine through two minute microcalcifications - the multi-focal lesions I had never showed up. Doesn’t make me feel overly confident about mammograms, I must admit.

Best wishes
Anne

I wonder if it has anything to do with the area in which you live, in-so-much-as how the screening is done.

My DCIS was picked up quite clearly on the mammogram and I felt that the breast screening unit were really well clued up and gave me bucket loads of information.

I’m in the North West.

Linda

Hi

My dcis was picked up clearly on mammogram and I felt the breast unit were very clued up as well. I’m in the South West.

Heather

I found a lump in my armpit having had a clear mammogram 9 months previously. On referral to the breast clinic I was given a further mammogram AND two ultrasounds that showed nothing untoward in the breast. A core biopsy of the armpit lump showed it to be a lymph gland affected with mestatic breast cancer cells, so the doctors were sure there was a primary in the breast. An MRI finally showed 2 very small lesions. I had a mastectomy and pathology showed 3 lesions (1 DCIS, and 2 ductal carcinomas). Although I am 58, the problem is that I have dense breast tissue and that is why (I was told) it was difficult to find any problem.

I have just completed 8 chemos, 4FEC and 4TAX and about to start radiotherapy followed by Herceptin and Arimidex.

I can tell you that I definitely WON’T feel reassured in the future if mammograms give the all clear.

xxx

Hi, I’d add to the above by saying that I was diagnosed with invasive lobular cancer on 29th nov after a no show on mammogram and ultrasound. hey - I was mildly impressed to have ultra sound, given I don’t think my breast tissue would be described as dense!!! I am 49 with an e bra and they are just in front of me… The result came from the core biopsy.

Today I have been for an MRI, to assist the surgeon for the op and check the other breast. All I can say is I went as soon as I noticed something.

I am on the ride now and will have a mastectomy on 27th December - i think my surgeon must hate christmas because he offered 24th!!! I have uni students for sons and decided that a normal christmas would be good.

My sis was diagnosed with same cancer this time last year - and nope no genetic markers - and hers showed up on ultrasound but not on mammogram. It has something to do with lack of calcifications in the tumour?

But a lot of cancers do show up on mammograms… so I would still go for one. I guess we are all different and what suits one won’t be the answer for the other.

take care Jx

Hi everyone

I was diagnosed with a lobular and ductal in May, had mastectomy in June with auxillary clearance. I had been going for mammograms privately every year since a calcification showed up 4 years ago, this time i had a grade 1 ductal (which was the calcification they were monitoring) and a grade 2 invasive lobular. My surgeon also told me that lobular is very difficult to pick up on mammogram so mine might have been present the year before but not showed up. I never had a breast lump so when they did the biopsey they went all over the breast to find out what was going on 24 punctures in all.

I have read in the Daily Express that MRI is the best way to detect lobular cancer, my breast unit were unimpressed when i requested that i had one every couple of years even when i offered to pay for it myself (i would have used my credit card like i did for the mammograms, I can cope with debt but not with a threat to my life) they just said that if they thought i needed an MRI they would send me for one.

This is not very reassuring i know but i think as lobular is not very common we girls who have had it should make a few waves and get our MRIs. I fully intend to keep pressing and pressing until i get one as frequently as i would have a mammo as the ultrasound showed up nothing.

Best wishes
Suzy

Hello Sarcath

I am like you, Mole. I found the lump myself. I had mammagrams, scans, biopsies and ultrasounds and they did not show up cancer. They only showed up a benign cyst. It was only when I decided to have the cyst removed after a year of visiting the breast clinic that the cancer was discovered. Unfortunately, the cancer was lurking underneath the cyst.

I feel it was not really the fault of the mammagram that the cancer could not be seen as it was hidden underneath the cyst but I wish there was a test/examination that would be more accurate. In my case it was purely luck that it was found, albeit a year down the line. I only wish I had had the cyst/cancer out earlier when I first found it when it was smaller - but at the time this was not an option.

Having said all this - I shall continue to have mammagrams as it is a first line of defence.

Christiane

Hi everyone,
I had a grade 2 invasive lobular cancer which was diagnosed from the 9 biopsies that were taken. The cancer presented as a thickeningof breast tissue with an area of puckering. 7 mammograms, an ultrasound and an MRI all failed to show it up. As has been said invasive lobular cancers can be notoriously difficult to pick up through imaging. I too have lost faith in this type of screening.
So you can imagine how I feel about having to have a mammogram on 21st Dec!!
Margaret

I have been let down by mammogram as well. I latest evidence shows that in high risk women [with strong family history and genetic cancer history should have MRI scan along with mammogram. In US they already do that[ see John Hopkins website] I think with NHS it is the cost and also the fact that there are not many trained radiologists to read it. I think we all need to advocate a better screening method.

I was much the same as Christiane, had all the tests done and they came back as a 46mm benign fibroid, I remember my surgeon saying to me he had good news. I had the fibroid taken out 3 weeks later on a account of the size and was told at my next appointment it was BC. Apparently there was a 33mm tumour hidden under the fibroid and my surgeon told me it was very aggressive. Apparently he was quite upset during the fibroid op because he had told me everything was OK. That was Oct last year and I have my next mammo on New Year’s Eve, with my follow up on Jan 10th. Not looking forward to these dates as I start a new job on Jan 8th.

Interesting to read all these posts re- mammograms and the detection of lobular cancer. 2yrs.ago I was diagnosed with invasive lobular following routine screening - thankfully the radiologist detected it- then followed further mammogram at unit plus ultrasound where it showed clearly and was biopsied - within 2 days I was told the worst and there followed a mastectomy and lymph node removal . The nodes were clear and I am so thankful that the mammogram picked it up early because both my G.P. and breast surgeon could not actually feel anything although it was 2cms.[I felt a slight thickening hence a visit to the G.P. a week before my screening appoint.] Ironically, 3yrs. before at my first screening I was called for multiple biopsy due to calcifications in that same breast and told it was clear - I live with the doubt that the first biopsy was not read properly and cancer was there at that point. However, I owe my life to the mammogram screening and would say always have any that are offered - my problem is that I have a large fibroadenoma in the other breast and would never feel any change if the cancer occured again - which I was told is a possibility with lobular and that it is difficult to detect - and I will not get other screening etc. apart from 3yr.mammogram screening programme. Feel I’ve been down this road once too often ! Would take any tests offered for peace of mind but NHS cuts mean follow up is compromised sometimes.

Hi Christiane and others !

My breast lumps were not picked up by a mammograms (over 3 years) or 1 needle core biopsy or ultrasounds, only until 3 years later (having been discharged) when it had already spread (lymph and 2 bone sites) was it taken seriously. I am very angry with the doctors who did not do a proper biopsy (surgeon said he should have done an exision biopsy at the start) and second opinion said he would have removed the lump when I first presented.

I hate to think of other women who are falsely reassured about their lumps being ok. Advanced breast cancer can be prevented, and some doctors need to change their practice in order to find these lumps as early as possible.

At least I am very oestrogen positive!

Hi - I should clarify that I am 47 and went initially aged 44 and was given repeated mammos (every 3 then 6 months then 6 months then discharged) cos I had a palpable (growing but nobody believed me) lump.