Hi, I’m new to this so bear with me. In February 2006 I had WLE for LCIS. Following surgery I was told the margins were clear and needed no further treatment. I’ve had 6 monthly mammograms since then. Last July my mammogram was clear. In January my mammogram showed “changes” so I was called in for Core Biopsy which showed all sorts of atypical cell changes including radial scar, adenosing sclerosis… So my Consultant decided to do another WLE to get a definitive diagnosis. This was performed on February 29th and the Pathology report has showed DCIS in the margins. It is ER positive, PgR positive and HER2 positive. My Consultant is recommending Mastectomy as she feels that my breast may well develop an Invasive Cancer in the future and that she’s not sure how much of the breast is affected by the DCIS. It seems very drastic to me to remove my breast. Does anyone else have experience of similar surgery for a similar diagnosis? Has anyone else undergone any other form of treatment for this?
Hi I am also new to this,
but last May I had a blood discharge from my right nipple I went along to my dr and was told not to worry it as probably due to start of menopause, but sent me for a mamogram, I was called back for a biospy where they found DCIS but there was another area in my breast that they wanted to test another biospy this again showed DCIS beacuse the area was to big I was told that a Mastectomy was required but they could do backflap reconstruction, which after some time I opted for this option. I was told that no further treatment would be required. November 7th came I had the surgery and a within 2 weeks was told that they found 9mm grade 2 been on the boaderline and HER2 positive I had the option to have chemo when my wounds had healed. I then got an infection on my breast and on my back that my surgeon then recommended a skin graft so again I went under the knife this was mid december skin was taken from my leg now I had 3 area that needed treated It is now March my breast and leg have healed but my back still needs to be dressed, so I am more than fedup with alll that has happened.but If I was given the option again I would still choose to go down the same route. I hope this does not put you off but I do feel that sometime if you have a bigger picture then there are no surprises so good luck
Dear The trumumshow
It doesn’t seem drastic to me (inasmuch as all cancer treatment is pretty drastic) - I too had a WLE and axillary gland clearance a year ago, but in my case the margins were not clear and showed signs of DCIS, so after chemo I had a mastectomy. They said a further margin clearance was out of the question, and in my case there was vascular invasion, so the cancer had got into my bloodstream. My sister had a non-invasive DCIS, same treatment mastectomy straight away though she did not need chemo.
My advice would be to steel yourself for a mastectomy - a pretty horrible thought after all you have been through I know. There are some interesting threads here on having elective double mastectomy you could read.
Good luck with your treatment and do take best care of yourself.
Hi Flyright, I suppose it’s seems so drsstic because some Doctors and Nurses say that DCIS isn’t cancer so if that’s the case why be so aggressive in the treatment?
I had sclerosing adenosis and was diagnosed with this before the lump was removed, which was then diagnosed as invasive (infiltrating) ductal carcinoma with focal ductal carcinoma in situ around it. I then had further surgery to take out the focal DCIS which in my case cleared it - so I didn’t have a mastectomy. But I did lose about a quarter of my breast and as I am small breasted I don’t like the results. I feel deformed and think in some ways I’d have been better to opt for mastectomy with reconstruction. Hardly anyone does partial reconstructions which I was also interested in.
DCIS treatment can often involve more surgery than cancer as they don’t know where it will become cancerous in the breast if it is widespread, if indeed it does become cancerous, as it doesn’t always end up doing so. Without more research a lot of women will continue to have precautionary operations. I’d like to see more done to find out what factors make it progress and find out how to prevent this. But we are not there yet
Hi again Mole
I agree with you about research into who will develop full blown cancer and who wont. It does seem a fairly primitive treatment regimen at the moment - all or nothing. I have DCIS , had a WLE and given the option of radiotherapy. I asked why the option and they said that I might be in a subset of women who may not need further treatment, but to date no research confirming this subset. I am aware that there are trials ongoing but wouldnt it save everyone time, money, grief and breasts if they got going with this? I am sure they have their reasons but to a lay person it seems that too much money and effort is spent on cure rather than prevention or minimal interventions?
Cathy
Hi Molennium, I too have sclerosing adenosis and radial scar and the DCIS is present within the radial scar. I suppose this is why my Consultant says that it makes her nervous as she doesn’t know the extent of the DCIS. I agree with Cathy59’s comments that it seems a primitive treatment and that if they can do do Ductal Endoscopy surely they could see the offending parts and remove them that way.
Interesting thread, I had not known about research showing that DCIS does not inevitably lead to cancer. My tumour was nestled in a wider area of DCIS, which my onc described as ‘pre-cancerous’ and likely to develop and spread further since there was already a tumour there.
I guess every case is different, and perhaps because I had a breast removed I need to believe that it was actually necessary - I daren’t go into thinking I might have saved the breast.
Hi
am very interested in any research anyone has
3 years ago I had DCIS pre-cancerous and was offered mastectomy & reconstruction. I feel it was hormone related as each month I grew more lumps so by the time I had the op - 4 months after dx I had several lumps, when i went to gp I had 1.
Now, unfrotunatley cancer cells have escaped - i was told that this happens to 2% of peeps with DCIS. I had thought it was all contained and sorted.
Now am going through chemo, op for all axillary glands to be taken out, have a ‘small deposit’ on my spine - secondaries, have radiotherapy at somepoint & tamoxifen. possibly more chemo…
Am on FEC 5 out of 6, with bone strenthener Pamidronate for my spine.
sorry to to share - but thats me…a real shock as dx christmas eve. i have a twin who is fine, a daughter who is waiting for a genetic appointment, my maternal cousin had bc & a lumpectomy, missed my mum & her twin (! yes twins ) but their mum & 5 sisters all died of bc, over 30-40 yrs ago tho.
I was glad i had the mastectomy due to number of lumps, reconstruction was an expereince and a good one as I went up from A to B bra size which peived my sis! ha! that was the silver lining
chemo this time has hastened my menopause - another silver lining to a rough ride & ups & downs
will be interested in any research links - am aware of NICE
Jan
Hi all!
Been away from here for a while since my first set of tests etc last April 2007… I had nipple discharge which was eventually tested and they discovered possible markers in so had a microductectomy in September on both breast as both were affected and the pathology reports showed early signs of dcis and or cell changes in all 4 of the ducts they removed …
I have now been waiting since December for a "hadfields " type procedure or a full ductal clearance operation…depending on which doctor I see they call it by a different name…to begin with my surgeon who had a accident postponed it and then said they had a bit of time to play with and I resisted the op for as long as possible ( being large busted a GG and only 31 this all was very off putting to say the least)…with regular monthly checks at the breast clinic…
I go for my op on the 5th June where they will remove all the remaining 15 ducts from each breasts and some of the nodes too…I personally would prefer a mastectomy with a immediate recon and feel this procedure whilst will help diagnose any more areas of concern won’t end all the risks associated with it…seems an odd way to do it to be honest.
Not many people if any seem to have the procedure I am having and this frustrates me as there doesn’t seem much knowledge on the end result…only the info surgeon has to offer…
any way enough of my ramblings…but I agree if dcis is not cancer why the need for such drastic treatments I agree to a point …but so many end up with it when it was found .
DCIS is confusing. I had WLE for IDC a couple of weeks ago and the test results show IDC + DCIS. Margins not clear on DCIS (only 0.5mm) so back in on the 27th to increase margin and removal of some more lymph nodes as the one that was removed tested positive. It seems to me that DCIS is cancer that has not spread from the duct, but it can’t be the same as invasive cancer or the pathologist would not have been able to tell the difference in my lump ??
I think a lot of treatment is based on factors other than the type of cancer, e.g. size of lump and size of breast. I am quite a big girl and lump removed was just under 2cm, they can take more without it noticing. That is the advantage of being F cup, the disadvantage is not being able to feel a lump until it is nearly 2cm, dispite careful checks.
There are soo many treatments and I think we are always looking for others that are the same as us, but we are all different and the good news is that we are not treated like cattle and given ‘off the shelf’ treatments, we are given the best treatment to suit us. Having said that, we need to understand why, and ask the surgeon/nurse questions to make sure the treatment is right for us. I find that I need to ask questions, information is not always forthcoming and I think that is because some patients just don’t want to know all the details so the medical staff don’t want to ram it down our throats until they are sure we want to know the details.
Oldtimer - your wait for treatment sounds bad - I hope you are getting better service now !
You raise a good point there, Firebird, about different types of “cancer”. I had a mixture of two different types of DCIS, apparently - one a papillary type and one a common DCIS type so there must be all sorts of different abnormalities and treatment is tailored on what they find. My lump was all encapsulated within a cyst, so easier to remove than scattered types of DCIS. I think we get confused because it is labelled DCIS when there are many variants all with different treatments and outcomes. I sometimes get scared reading about others misfortunes with DCIS, so I just now focus on what my oncologist told me. The trouble is we are asked to make decisions regarding our treatment when really we haven’t got a clue.
all treatment is based on information to date and understanding to date. We know 2% of people diagnosed with DCIS develop secondary breast cancer, which is treatable but not curable. That means 98% don’t. We don’t know whether we will be in the 2% or the 98%.
Old timers situation proves that even if you opt for mastectomy with DCIS, this does not mean certain cure. It confirms my view that whether your breast cancer progresses or not is a lottery, whether diagnosed with DCIS or invasive cancer, or both in my case
I really do hope that the research comes up with why cancer cells escape to other areas of the body and what can be done to stop this process
Mole