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Breast Screening Debate
Dear Breast Cancer Voices
Breast Cancer Care is launching a new series of debates on the hot topics of breast cancer which aims to bring together patients, health care professionals and policymakers together to debate key issues facing people affected by breast cancer.
The format would be a series of people presenting a view on a subject before it moves to a wider debate. The very first one in the series is on breast screening and will be held at the Royal College of GPs in central London from 6-8pm on Tuesday 13th April and we are looking for a Breast Cancer Voice to talk about their experience to put forward a patients view of the topic.
If you would like to take part, please do get in touch.
Thank you for your help
Vicky Lane
User Involvement Manager
Part-time Thursdays and Friday 9-5pm
I don't suppose you will want someone who thinks screening every woman from 50-70 is a vast waste of money
I'd rather see targeted screening. Mammograms are useless to me because my cancer didn't show up on mammograms. I don't believe it will now either as I have dense breast tissue. This is the most likely to get breast cancer but least likely to show up on mammograms.
Mammograms tend to detect slow growing cancers. we get blamed for going to doctors too late but the quick growing ones manifest themselves between the three year gap between mammograms
80% of breast cancers are found by women themselves. The mammography service takes the credit for every reduction in deaths but it can't all be down to mammograms, it must also be due to more consistent treatment earlier - I was told surgery was the best treatment so early surgery has probably been the main factor
I agree with a lot of what you say, Molennium. However, my cancer was caught on my very first mammogram and saved me from having to endure horrendous bouts of chemo. After my mx my dcis was discovered to be invasive but my lymph nodes were clear. If I had not had my mammogram the cancer would only have been discovered when it showed itself as a lump and could then have spread to my nodes. My issue with screening is not knowing about the dcis. It was such a shock learning about the condition. I wrongly thought a lump was the first sign of breast cancer and because I didn’t have a lump I had no worries about the mammogram. Being called back to the screening centre I thought was to retake my mammograms because the radiographer had said small breasts are harder to xray. Imagine my shock learning about a condition I didn’t know existed and having to explain afterwards to family and friends, who also didn’t know, which added significantly to my emotional meltdown after dx.
I think there’s a place for screening and I’ll feel better knowing my healthy breast will be screened regularly to check this dcis doesn’t appear there.
Annys
I also agree with Annys about screening, my bc was found because I went for my first mammogram at the age of 52. I was recalled and was told that it was because microcalcification had been found (I'd never heard of it) I had biopsies done on both breasts and was then told that I had DCIS in the left breast. To cut a long story short I had 3 ops and and now going through the rad treatment with a positive outlook from my oncolgist that I am one of the lucky ones. If I hadn't had the mammogram then my cancer would not have been found until possibly too late or it would have involved far more surgery and poss chemo.
Mammograms and early screening saves lives.
phillippa x
Apologies Vicky I think we have rather hijacked the topic that you started which was asking for people to volunteer to talk about their experiences.
Phillippa
Hi
My cancer was found on a routine mammogram at age 64. I had routine ones from age 50 with no problems then got a recall for a further mammogram. Like Annys, I just thought that my boob hadn't been squashed enough (mine are large). I had a 2cm, Grade 2 Invasive Ductal Carcinoma, fortunately the Lymph nodes were clear.
I think most of us go along for routine mammograms assuming everything will be OK and it is a definite shock when it isn't.
All screening, not just for cancer but heart disease etc, can seem to be a waste of money in terms of lives saved if you just count numbers. However, for me it has made a tremendous difference to the treatment I have needed. If the cancer had continued to grow until I could feel it, it would probably have spread to the Lymph nodes.
Mammograms don't always pick up the cancers, but it is one way of trying, hopefully, to find them early and start treatment.
Just my view
Margaret
Hi
I commented on the forums in Mid-Jan re a critical report in The Times on screening......." 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 the Cochrane centre in Copenhagen 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 have still to hear of anyone else whose experiences mirror mine- i.e. Grade 3, Stage 3 cancer with node involvement, detected by screening - with no palpable lump and no other symptoms. Although I have to be grateful for prompt treatment, however horrible, I really remain rather sceptical about screening: my closest friend found a lump 5 months AFTER routine screening - and died of BC 15 months later aged 53.
My oncologist would not give me any answers as to how long I might have had my cancer: had it been slowly growing and spreading to the lymph glands in the ensuing 3 years since my previous screening- or had it only been there just a short time and had grown rapidly because it was aggressive.....and other signs and symptoms would have appeared shortly ? If the latter, then it really was just 'luck' that the screening came when it did!
He was really quite dismissive of my questions over this - and also of discussing possible causes, reasons etc for my particular BC; only really keen to get on with 'Treatment". I don't think the medics are sufficiently aware that these questions are very important to patients: one moment we 'think' we are really fit and healthy and the next we are being told that we must face intensive and unpleasant treatment for at least 9 months & live with quite a big question mark over our future from then on out. We are having to come to terms with this at the same time as we are still trying to make sense of something that has apparently come out of nowhere - especially when one has had no family history and no symptoms; it all seems SO random. I don't think I am alone in wanting more answers.
...But I guess this is not exactly what you are asking for at the RC of GP's event...........?!
Screening saved my life, but it could have saved a lot more if it wasn't for Government guidelines that resulted in reduced screening for me. Here's my story.
My aunt died of breast cancer in her 40s. My mum had BC in her 40s and survived to have it again in her 70s. Because of my family history and my own history of benign breast disease, I was screened every 6-12 months (from the age of 30) at the Royal Marsden Hospital as part of their early diagnostic programme ... I had alternate mammogramms and Untrasounds. During this time I had two fibroadeneomas removed (from each breast).
On reaching 50 I was told screening would now be every 3 years in line with national guidelines. I made a fuss (why screen me less when I reach the most vulnerable age group?) and in one sense I was lucky - the hospital agreed to screen me every 18 months. In another sense I was unlucky, as at age 54 a mammogramme showed I had DCIS. I had both breasts removed on my 55th birthday. The surgery revealed it was a fast growing type that had invaded my breast and spread into my left sentinel lymph node.
2 months later, my 1st chemo triggered a serious pulmony embolism followed a few months later by heart failure then more heart failure from my by my 1st and only dose of Herceptin. As a result of the PE I had to inject my stomach every day for a year with blood thinning drugs.
I haven't worked for 14 months and find physical exertion quite challenging. I've gone from being a fit, healthy, happy and successful career woman who loved sport to being a slow, grey, middle aged woman who struggles to walk the dog some days. Also as a high earner my loss of income has been especially difficult.
I can't help thinking if my 6-12 month screening had continued my DCIS would bave been caught in time and my life would not have been ruined by chemo. (It would also have saved the NHS 10s of 1,000s of pounds for my aftercare which is still continuining.)
What makes me even madder still, is that when I offered to pay for more regular screening I was told that wasn't an option. What happened to my choice?
Paulakerly, your experiences have been truly horrific. No wonder you feel so bitter about the system! You have been through so much and are obviously still doing so. It certainly puts my experiences into a proper perspective.
Reading about others’ screening experiences I won’t feel so reassured now when I have my remaining breast regularly screened. But surely, imperfect as screening is, it’s better than just waiting for a lump to appear?
Topsymo, I agree with all your comments about the emotional answers we all crave from our surgeons, and which they don’t seem able to provide. I’d love to know how long my DCIS was present. As it was only picked up in my first mammogram, for which I now know I have obviously been very lucky, there’s no way of knowing. Ironically, 11 months before dx I had started the family on an anti-cancer diet, much to their annoyance and continuing disagreement. Imagine my embarrassment when I had to announce I had bc. I’d like to think that the diet halted the spread of the disease, as there has been no lymph node involvement and I’m continuing to make them eat better food on that argument alone!
Annys
Hi everyone
Thank you for getting back to me, and for sharing your stories. We have now found a speaker from the Breast Cancer Voices group. (Just so you know, we picked the first person who came forward so we aren't biased on what the person talks about - we just want to ensure that a patient speaker is present as you are all as much an expert as the professionals.
You are all more than welcome to attend the event and enter into the debate on the evening - as I mentioned its at the Royal College of GPs in central London from 6-8pm on Tuesday 13th April.
It would be great to see as many of you there as possible. If you are interested in attending, please do let me know.
Thanks
Vicky
Despite being misdiagnosed for six months, having nothing showing up on mammograms or in biopsies, my cancer was still regarded as early breast cancer. that is because early breast cancer equals small tumour and no lymph gland involvement. I had a visible, palpable tumour for six months, it was an invasive cancer and it did not show up on mammograms. I think it's a matter of luck in the case of women with dense breast tissue whether screening picks up tumours any earlier than a woman or her partner might find it herself.
I would have preferred to know I was in a high risk group before I got screening - due to my not having any children, having dense breast tissue, being tall and having breasts of noticeably different sizes. All of these factors are individually smallish risks, but collectively a bit iffy. The other risk factor was my age at diagnosis (48) and the diminishing likelihood of fibroadenomas from 40 onwards. So I think my lump was highly suspicious from day one, not that the docs said this to me at the time
Mole
I have read everyones story with great interest.
I would like to see the use of MRI scans being discussed as a screening tool instead of mammograms - indeed, since the age of screening is being lowered to 47, I believe that younger women should have this in preference to an MRI.
MRI is far more appropriate to be used in younger women and those with dense breast tissue . However, it is very expensive, there are far too few machines available and I'm sure their lack of use is down to cost implications.