don't rely on mammograms

I was diagnosed in November 2006. I saw a dimpling of my breast and then felt a large hard area above it. Not a pea type lump as I had always thought. When I stood in front of a mirror I could see it. I had been for a routine mammogram 14 days earlier. When I went for my ultrasound the lady doing it asked a doctor if he would phone through to Bolton for the results of the mammogram as I was still waiting. The doctor came back and said it was all clear. I did have a large cancer 4.5 cm and 4 glands affected with vascular invasion. I questioned the mammogram results when I returned after surgery on the 19th of December. The bc nurse said to me , oh no you must have misheard it wasn’t clear. you would have been recalled. I told her that both my friend and I had heard the doctor tell us it was clear. She was very dismissive of me and said no it wasn’t. This week for the first time I got the courage to read my notes and there it was in black and white. Mammogram on 18th of October wwas clear. On re-examing it they then decided that there were some irregularities. I asked about it and they confirmed that it had been read as clear. Why I am boring you all with this long tale please tell everyone who has mammograms to be very vigilant about checking their own breasts do not rely on a mamogram. I am 57 and didn’t fell my breasts as thoroughly as I should have because I was having ,ammograms… Love to al Eileen

Hi Eileen

Sorry to hear about your mammogram but thank goodness you went to the doctor and questioned everything. Doesn’t it make you mad.

I am 53 and last year on 19th March I had a mammogram, performed by Wigan and Leigh Trust. It was a mobile screening unit near Preston. Four weeks later I hadn’t heard anything and after being recalled at 49 with a calcium spot I thought I would chase the results. I was told that the mammogram had not been red yet as they were short of consultants. Okay I thought, if there was something I’m sure they would have dealt with it urgently. I went to France at the end of April for a week and when I got back there were appointment letters waiting for me. Obviously I had missed the 1st one because I was away. They only posted it on the Friday for an appointment the following Thursday.

On attending my appointment I was taken into a room and told to lie down. It was only when I was led down that they actually said they were concerned about a thickening. Sure enough I had cancer. A very aggressive one but it was still middle of June when I had my mastectomy. Have had chemo, 9 days into radiotherepy and herceptin for a year as I was HER2 positive.

So 12 and half weeks later from my mammogram I was in hospital. If I had found it myself and gone to GP I would have been seen under the 2 week rule. Why do they have screening if they have no back up ?

Sorry to go on

Much love

Liz xxx

Hi Liz, sorry to hear of your long wait. I too am her2+ and have just had my 9th herceptin. I am just so glad I found it myself as the mammogram had read clear. Hope everything goes well for you at least you are over the worst. Rads is not so bad and herceptin has caused me no trouble, in fact my heart function hads gone up from 59 to 71 so glad about that take care Eileen

I had a clear 3 -yearly mammogram 9 months before I found a lump in my armpit. A core biopsy showed it to be a lymph gland containing metastatic bc cells. Another Mammogram and 2 ultrasounds still showed nothing in the breast itself, although the doctors knew there must be a primary there. An MRI eventually showed not one but THREE very small (2mm, 3.5mm and 6mm) ductal tumours, one of which had already spread to my lymph (fortunately only to the one gland).

So I agree, don’t rely on mammograms!

xxx

I agree entirely about relying on mammograms. When I went for my routine mammogram the radiographer could not manage to ‘do’ my left breast and had to fetch a colleague who succeeded. I duly received a letter saying all was well. Some months later I felt a thickening - I had previously had surgery to that breast for a benign problem - but, my breast being somewhat distorted anyway, and backed up by the thought that the mammogram was clear, I tried to put it out of my mind. When it seemed to be getting larger my first thought was that it might be a secondary from the lung cancer I also have been treated for. To cut a long story short it was a primary 36mm grade 2 tumour.

I have since read that mammograms are difficult to read a) if you are small breasted and b) if you have had previous surgery. I also wonder about the dozens of X-rays I had with the lung cancer - I believe this can cause tumours.

Anyway, the point I am making is that they should make clear to you that you are difficult to read and that you should be extra vigilant. Don’t know if that helps anyone but it has helped me to get it off my chest!!

Sarcath

The benefits of sreening in general and mammogams in particular are I think exagerrated. I am worried by Gordon Brown’s current focus on the benefits of screening…I think its a way of taking the focus off the slow progress in finding a cure for cancer.

As far as breast screening is concerned…yes mammograms can find some cancers and some lives are probably saved, but mammograms have their drawbacks, not least in prompting a sense of false security if you get a ‘clear’ result. I had ‘clear’ mammograms aged 47 and 49 (because my GP identified lumpy breasts). I then had one aged 50, one at 52 (had moved) and one at 53. (had moved again)The last one recalled me but I was sent away. I was diagnosed with locally advanced breast cancer 7months later. This of course is anecdote but I know may other such stories…and there is also scientific evidence that mammograms are not all they seem.

Mammograms have their place but there should be more publicity on the drawbacks. The breast cancer charities should be doing this but they concentrate on promoting only the benefits of screening.

A consultant called Angela Raffle who works in Bristol has written some interesting stuff about the problems with breast screening programmes.

Jane

Reading everyone’s stories I can see that it is not always possible to rely on mammograms. However I will be eternally grateful for the screening programme. I was dx with lobular cancer aged 50. This was found at my first mammogram. I told the consultant that I hadn’t felt a lump and he said “I wouldn’t have expected you to”. I feel that I am probably one of the people whose life may have been saved by screening as presumably the cancer would have been much more advanced before I would have been able to feel it. I will, however, bear everybody’s 'warnings in mind and remain vigilant in examining myself!

Gwyn

I had a clear mammogram 9 months before I found a lump myself. It was cancer. However, the nurse put the two ex rays together on the screen for me to see. The previous mammogram looked perfectly clear, yet the present one had a large round white area which was the cancer. The cancer on the first mammogram didn’t show up at all. I was told that I would be having mammograms every 18 months now but I will still stay vigilant!