I see on a DCIS thread that when they perform mastectomy they dont always get all the breast tissue out, what evidence is there on this? I am now worried as I was told all the tissue was removed so it cant come back in the same breast. I had DCIS high grade wide spread and post op was told that I had areas of micro invasion. I had mastectomy, no lymphs involved and had a lat dorsi recon with a small implant not having any chemo, rads or drugs as they told me it cant come back as there is not any breast tissue left there.
I can only speak from personal experience Carole - I had a mastectomy - no lymph node involvement and 6 months later had a recurrence in my skin! Maybe if I had been able to have rads this would not have happened - but I already had extensive rads to the area 5 years previous.
Just read your comment, did you have DCIS or invasive cancer. I too like Carole had dcis with micro invasion and have been assured after mastectomy and no further treatment that the DCIS has gone and will not come back in that breast. Obviously there is a risk of having DCIS in other breast or for that matter invasive cancer. Any advice please. It had not occurred to me about recurrence in skin.
It is impossible to remove all breast tissue because of where is starts to become armpit etc. I believe it gets difficult to discern which is which plus it is probably a physical impossibility to remove all of any one kind/area of tissue - they just do their very best to get it all out and pare it back but there’s always going to be something, however small, left behind.
It is the same with ovary removal, there is still a residual risk of ovarian cancer because of cells still in the body although not quite the same because the cells are left when we grow up and the ovaries move down to their permanent “home”.
I didn’t have a mastectomy for DCIS although I did have some DCIS it wasn’t widespread. I also had a small tumour but I was very keen not to have a mastectomy especially as it is not possible to remove all the breast tissue so a mastectomy is a wide local excision essentially, the wides you can have. That is how Dr Susan Love’s Breast book describes it if I remember rightly.
The idea that you can be sure that all the cancer is automatically cured by mastectomy was refuted years ago. Breast cancer is a systemic disease which is believed to spread early on in its history. Whether it then causes any damage seems to be down to the abnormality of the cells and some other mysterious reasons that the immune system doesn’t stop it. Cancers being genetic malformations of human tissue are more difficult for the body to detect than totally alien cells such as viruses and bacterial infections.
DCIS is theoretically curable as it is thought not to have spread. But I have heard of people who have gone on to develop secondary breast cancer who had DCIS so it’s not 100% reliable. Having said that, very few women with DCIS go on to get further disease if treated. Lumpectomy has been found to be as effective as mastectomy for tumours less than 4 cms - if accompanied by radiotherapy. Tamoxifen helps keep breast cancer from recurring if the tumour/DCIS was oestrogen receptive, halving the risk of recurrence and of getting cancer in the opposite breast.
some breast tissue goes up under your collar bone area, so i was told…thats why they give radiotherapy above where the breast was /is. I guess that bit is too hard to get at with surgery.
Sorry if I have confused. My original tumour was not DCIS but a 5cm Invasive Ductal with some LCIS. I did not have any surgery the first time. But 6 years on I had a large mass invasive lobular which resulted in a mastectomy. If was 6 months after that I had the recurrence in the skin.
Thanks for your comments, to clarify I had widespread DCIS all over the breast, high grade, and a 4.4cm lump removed which had presented to me as a thickened area, GP could not feel it and nor could the consultant until I pointed him in the right direction. Am now even more concerned as I know that the breast tissue extends under the armpit but felt safe there with the clear lymphs but forgot that it goes up to the collarbone. Will call my bcn this morning to ask her again. At pathology results they told me I had clear margins of 1mm anterior to the skin and 2mm posterior to the chest wall but how does that mean they know I am clear going up to the armpit and the collarbone? How do they know?
I had immediate recon that means that the only scar luckily for me on my boob is circular slightly larger than my nipple was but I can’'t get my head round how they could cut out all of the breast tissue thru such a small aperture.
Dawn, how did your skin look and feel? I did have a small black area which peeled off within the first few weeks but I just thought that was normal as they told me that sometimes some skin dies. I have 2 areas of about 1cm each which feel really dry and wrinkly and are darker than my own skin. Should I be getting this checked out?
Hope you are all doing ok, thanks again, luvnhugsCarolexxx
My skin looked and felt fine on the mastectomy site but i had some tiny red spots (they looked, to be honest, like cat flea bites - i had 5 cats and thought they had shared their visitors with me lol) but didn’t itch. When my surgeon saw me for 6 mth check up he was immediately suspicious and did biopsies on them. I think if you have anything unusual on your skin you should ask them to check it out for you.
I’ve just had a prevenative double mastecomy, skin sparing and kept my nipples. My breast surgeon told me they would remove all breast tissue, and there was a very noticable difference between the breast tissue and body fat, so they knew where the breast tissue ended.
Saw BCN yesterday and she tells me that it is impossible to remove all breast tissue during mastectomy, she said that the recurrence rate for return of cancer in the mastectomy side is 2% so that puts my mind at rest now as I am sure it’s a helluva lot higher % rate for getting knocked down by a bus etc.
The problem with the dents in my recon she says is either that the lat dorsi muscle has moved or that I have adhesions, will see consultant on 18 March and he will be advising me if they can do anything.
I had my mastectomy June 2007 due to a small patch of high grade DCIS (he did the mastectomy because he couldn’t find clear margins with the WLE). Lymph nodes, 12 all clear.
My oncol said he was pleased with the operation and glad he’d done the mastectomy as they found some more low grade DCIS in the tissue.
I couldn’t really get a satisfactory answer as to my question…“Is DCIS classed as BC or not”…
In the week leading up to my WLE I asked my oncol…“Is this BC”…he said “No”…that was as much as I got, but having said that, he’s a super bloke and I really like him.
Now, my BC nurse told me…“Yes, it is classed as BC”…
I also asked my oncol…“Am I going to be OK now, am I safe”…“Yes” he replied.
So were do I stand on the issue of …is it, or isn’t it? I just don’t know.
Now with the talk of the ‘possibility’ that DCIS can come back in the removed breast, I don’t know what to think anymore.
I’m on Tamoxifen for the next five years.
I really want to put this behind me and I would love to stop worrying.
I didn’t have a recon, I thought I’d wait for the five years of Tamoxifen to do its thing before I considered a recon.
I was told that DCIS is Breast cancer, maybe it depends on your initial diagnosis as I have heard folk saying DCIS is pre cancerous cells. My consultant will not tell me that I am safe or cured as he says they can never be 100% certain that it will not recur. Maybe thats the “Dont sue me” mindset that seems to be invading the UK from the US of A!!!
My DCIS was widespread all over the breast, I had a slightly inverted nipple also and they initially thought from the FNA that it was invasive which means that that the DCIS has learned how to get out of the duct and into the breast tissue. They knew from the core biopsy that it was high grade which means fast growing.
After my mastectomy they had found 2 areas of micro invasion so mine would have gone to invasive cancer.
I think that DCIS is the best of a bad lot and consider myself very lucky to have escaped from undergoing rads and chemo and drugs. I see you are on Tamoxifen which I understand reduces the risk of recurrence. You need to speak to your BCN again as I have done, they know your diagnosis and prognosis and will be best placed to advise you and reassure you.
Recurrence in mast site is only 2% which is nothing to worry about at all, easy to say but I know that if you are like most of us then you will worry no matter what. I am now 10 weeks post op and am thoroughly reassured with this 2% meaning that I can stop worrrying about it coming back 2% means if it did come back I would be very unlucky indeed. I do hope your worry eases soon Linda, the way I see it on a good day is that I am damned if I will let this disease stop me enjoying and getting on with my life. On a bad day I am so pissed off with this disease for entering my life and putting all my plans on hold whilst I recover and try to move on. We have choices in life Linda, we can let it take us over or we can take it over and even on a bad day that is what I intend to do. Don’t get me wrong, I do lie awake at night doing the what if thing but I know it is up to me to put this demon in its place and that is not an easy thing to do is it.
I know by the very nature of our being, we worry, about anything and everything and with BC entering our lives, well, it’s just one more bl**dy thing to worry about.
Like you say Carole, we do have choices and like you, I’ll also be damned if I’m going to let this thing invade my time on this earth.
The thing that has given me hope is talking - through the BC Care Site - to a lady who ten years previous to our conversation, had High Grade DCIS and well, it speaks for its self I suppose, there she was, fit and healthy, talking to me ten years on…
Onward and upward - as they say - who * they * are, well I don’t know…
Well done girl, good to hear back from you and it sounds like you are in a better place now with this. No doubt we will yo yo back and forth and I agree that this site has helped me tremendously, just hope I can help others too.
In Sept 2005 I had immediate DIEP recon following mastectomy for high grade, widespread DCIS, found on my first regular post-50 mammo. My pathology sounds just like yours, but with 2 small areas of micro-invasion. They said there may have been others. No rads, chemo or drugs-I’m er-ve.
I used to worry hugely about recurrance, spread etc. I just wanted to say that I have finally stopped worrying, maybe it’s simply a matter of time, and then ‘normal’ life and other worries take over!
Our stats are good, and I now consider myself lucky. And lucky I found the support I needed to ask these questions!
Thanks for your kind words there, I am not worrying about recurrence now at all, I won’t let it take up my time!!! We are lucky as you say for sure I do know that, wishing you well, take care.
