How long is it safe to wait

nim88

My wife was diagnosed with ILC in the right breast on March 25th 2009 (the doctors call it tubular lobular carcinoma). She had lumpectomy to remove the affected area on March 30th. She had previously had DCIS in the left breast in 2004 which was treated with lumpectomy and radiation.Given the size, grade and stage this time, the conventional treatment recommended is radiation (post lumpectomy) and tamoxifen. However, given that the removed tissue showed ILC and had LCIS as well as some DCIS, we are very concerned and have been giving serious thought to a double mastectomy.

This has been a very stressful time for both of us and we want to make sure that we make the right decision and we err on the side of conservatism if at all - i.e. do the most aggressive thing to reduce chance of recurrence. Many doctors and ladies on this board have mentioned that there is little difference between the the two options and that it is personal choice which is where we are at now.

The question I have is this - how long is it safe to wait till we decide whether to go with radiation or with mastectomy? It has now been 7 weeks since the lumpectomy and my wife is very concerned that bad stuff is happening inside her. I can totally relate to what she is saying but am talking to a number of doctors and trolling sites and doing research to make sure we make the right decision for her and she does not regret it later on. In one of the (second) opinions that we got the Onc noticed that there may still be some residual very low grade DCIS left over (i.e margins are not clear) in the right breast from where the ILC was removed (it was in an area separate to the ILC). However, our surgeon (who we will meet later this week) had noticed that and did not seem concerned so we have to go back to ask her about that. 

Sorry for this long winded tail. So in summary can anyone tell me from they may have heard from their surgeons/oncologists how long it is safe to wait after a lumpectomy to decide on future course of action. Of course this may be complicated by the fact of the residual DCIS.

Thank you for helping us out. 

61linda

nim88 - Your wife's experience is different from mine only in that I had a double mastectomy two months ago after the first diagnosis of ILC primarily for other medical reasons that made multiple procedures dangerous for me. I waited just over two months from diagnosis to surgery while I reseached my options and took all the time I needed to decide. It looks like her indicators (ER+, PR+, HER-,tubular) are for a slow growing, nonaggressive lesion and that gives her more leeway to decide. If she feels she has to do something quickly, maybe she does. Her body may be telling her more than any objective test can. Having multiple sites as she does is a very scary thing. The other side of this coin is that the cancer has already been there a number of years so a few more weeks won't change much.



My experience of decision making is that even for the docs, this is educated guesswork so the more educated you both are about all the options the more likely she'll get to where she needs to be. I read through all the dot org sites and a lot of the dot com sites. I read the reseach, stacks of books, oncology journals from my friend an oncology RN, and talked to anybody who sat still long enough to listen. The American Cancer Society also did some research for me and got back to me very promptly with the results. I made notes of questions that further reading usually answered and took the unanswered ones to my surgeon and oncologist. Those two months were really focused for me but once I decided, it felt like coasting. Just deciding was a huge relief.



I went to a class on lymphedema since that is a consideration. My sister with DCIS had a lumpectomy with sentinel node biopsy and radiation, now is dealing with lymphedema four years later. A big benefit of double mastectomy is no need for radiation and no chemo if the nodes are negative. Except for the physical therapist who taught the lymphedema class, nobody told me that radiation can damage the remaining lymphatic system and adds to the potential for lymphedema later on. She gave me a sheets of information: signs and symptoms, exercises to reduce the potential to develop and to treat occurances and information on reseach done to stimulate regrowth of lymphatic drainage.



My path report showed another DCIS in the same breast and another site in the other breast that had been undetected. I feel like I dodged a bullet because I don't really believe these are innocous. I believe once a DCIS becomes invasive, the others will too. Like your wife, a lot of women had to go through this whole experience again but next time the nodes were postive so treatment was much more extensive. Big IDC statistic: 20 to 29% have involvement on the other side. It is known to be multifocal. The docs don't talk about this much and were not real happy when I brought it up. The question appears to be how many times your wife is willing to go through this and how much tolerance for risk she has.



Sorry this is also long winded but this a very complicated issue. My best to both of you. In the end, your wife will make the best decision for her. It's wonderful to see her partner so supportive and proactive. My only advice while you decide: eat well, exercise, get help from your doc if you need sleep aids.

nim88

61linda

Thanks for your very detailed and helpful message. We do not live in the US otherwise the decision would be a snap - double mastectomy with reconstruction. My wife does want to get on with it because she doesn't want to think about it any longer and all I want to do is make sure whatever decision she makes she does not regret later on. I also want to free her from the burden which is why I am doing the research and feeding her the relevant information for her to digest. She seems to be in good spirits which I am very thankful for but I think we are going to need to decide fast otherwise it may get too much for her.

I wish you all the best with your treatment and future and thanks once again for your help.