multi-focal DCIS- is it ever treated with lumpectomy?

Options
water804
water804 Member Posts: 6

On October 30th I had a lumpectomy done on what was thought to be the only area of DCIS in my left breast. Two weeks later, I had a follow-up mammogram which revealed another area of DCIS, which today the surgeon said was 3 cm? I have no idea what this size means- is it large? Small? It is apparently on the other side of the breast? The surgeon recommends mastectomy since this indicates possible other areas of DCIS. My questions are- how do we know if there are other areas of DCIS if they are not seen in the mammogram? Why can I not have another lumpectomy and go on to do radiation and tamoxifen as planned? Has anyone had this diagnosis and been treated with lumpectomy/radiation/tamoxifen? Also- is there a point in having an MRI? The surgeon seemed discouraging on this issue, as well as having no useful information to provide as far as watchful waiting.

Also, I have been diabetic for 32 years (type 1) so not sure if reconstruction would be an option for me, should I choose mastectomy. Having gone through the last lumpectomy, I am terrified of having more pain, more recovery time, more anxiety. I am so full of anxiety about this decision, I can't eat, I can't sleep, I can't concentrate, I can't work. And I am incredibly frustrated by the lack of information about this.

As I am sorting through all of this, too, I feel I am so anxious that I am causing more cancer to develop that wasn't there before. I told my doctor, I can feel it growing. I wasn't sick before, I felt fine, and I feel ok now, at least physically, but I wonder how to cope with this feeling that just saying I have cancer is making it true, and making it worse. Probably so many people can relate to this anxiety. I feel like I am in such a crisis, and yet, over something that they call stage 0, non-invasive.

That's a lot of information and a lot of questions, I'm really sorry- I ask these questions of medical professionals and they can't give satisfactory answers. But any kind words, suggestions, or advice would be welcomed so much. Thank you so much for reading this. Love to everyone who is going through this.

Comments

  • water804
    water804 Member Posts: 6
    edited December 2014

    I guess maybe the question is unclear- I am wondering if it is possible that I could have multiple sites of DCIS (so far 2 that we know of) and ask my surgeon, who has made clear that he thinks the only way to go is mastectomy, to instead do another lumpectomy. The thing is I am having trouble getting a straight answer about why, if my condition is stage 0, there is no other option, even watchful waiting.


  • LAstar
    LAstar Member Posts: 1,574
    edited December 2014

    What grade DCIS had been found? Mine was intermediate and high (grades 2 & 3) which is more likely to become invasive than low grade (or grade 1). Watch-and-wait seems to be an option for low grade DCIS but less so for intermediate and high grade.

    My DCIS was multi-focal also but the two areas that were indicated by the mammogram were close enough that my BS thought he could get them both in one surgery. In the first lumpectomy I had 4 of 6 margins involved. Then I had an MRI that indicated there was much more DCIS than previously thought (it also indicated some spots in the other breast that turned out to be false positives which is often why some doctors don't want to use MRI). I tried a second lumpectomy but had involved margins again, including one that had been deemed clear in the first surgery. DCIS can have skips in the ducts so some researchers think that margins should measure more like 1 cm to be considered clear. For me, the writing was on the wall and I had MX.

    3 cm is a sizable amount of DCIS. The fact that it is in two very different areas is concerning. The ducts come from the back of the breast to the front and converge in the nipple, so having DCIS in two very different areas of the same breast might suggest that it is fairly extensive. Having two lumpectomies may result in an unsatisfactory appearance, and if MX would be ultimately required you may not want the additional surgery and scarring.

    If you are not worried about the appearance, then it's feasible that you can ask the surgeon to try another lumpectomy. This is what I did, but it only got me the peace of mind in knowing I did every thing I could to avoid MX. A radiologist will not start radiation until there are clear margins.

    You have every right to feel anxious! This is an incredibly stressful time. These decisions are grueling. You can get a 2nd and 3rd opinion, have a different pathologist review your slides, and see if anyone suggests a different treatment.

    If it comes to it, I want to assure you that having a MX is doable, and there is peace knowing that the cancer is gone. Reconstruction is another can of worms with its own decisions, but it can be done later when you ready.

    I wish you some clarity in your path forward. I know this is such a hard decision. {{{HUGS }}}

  • water804
    water804 Member Posts: 6
    edited December 2014

    Thanks so much for your thoughtful reply, I really appreciate it. It helps to know I am not alone with this, it can feel like I am deliberately being confused and mislead, due to the lack of information. For example, I have asked on numerous occasions, what are the odds of this not even becoming anything? And naturally, no one knows. So being told you have a non-invasive, some would say non-cancerous cancer, which may or may not ever require intervention, so its best to do this very terrifying and confusing, not to mention painful procedure, based on no actual hard data, really feels unfair and frankly I find it infuriating.

    Its very hard for me to even consider making any sort of peace with this. So its helpful to know it is possible to put it somewhat behind you. Right now I just am very confused and sad. Thanks again.

    Btw, the cells were said to be grade 2, so not the best scenario.

    The surgeon seemed to suggest an MRI, but seemed not convinced it would do any good, and explained all the reasons why it wouldn't. This also confuses me. Why mention it if there is no point in having it? Is there any point in having it? Why does anyone have it? On the plus side, I would rather not go through radiation, and if I have the mastectomy then I would not require that. Does anyone know if they still recommend tamoxifen though?

  • LAstar
    LAstar Member Posts: 1,574
    edited December 2014

    Tamoxifen is still recommended if you have a unilateral MX.

    It is all confusing. It helped me a lot to read the research for myself and make my own assessment. I discussed the research with my BS who was not always up on the most current information!

  • LAstar
    LAstar Member Posts: 1,574
    edited December 2014
  • LAstar
    LAstar Member Posts: 1,574
    edited December 2014

    Just checking in and hoping you are finding a clear path ahead!

  • have2laugh
    have2laugh Member Posts: 132
    edited December 2014


    water804- Not sure if you made your decision but wanted to share my experience. My DCIS was found on MRI, originally thought to just involve 0.7cm area so opted for lumpectomy. Like LAstar, 1st pathology revealed surprise of 4 of 6 margins still positive and determined to be multifocal. My surgeon suggested quadrantectomy-larger lumpectomy-as he felt this would still preserve appearance. I knew going into second surgery if this didn't provide clear borders we would do mastectomy. I did get clear margins but still very close in two areas so I moved onto radiation within three weeks. The total area involved was 2.5cm versus the 0.7cm originally seen on MRI  so while I am happy MRI identified this area, there are microscopic changes that can be revealed by pathology. I can tell you I was not entirely prepared for effects of surgery and radiation. With a larger area removed healing times can differ and I have had issue with lymph edema, seroma in the breast and side effects from radiation. Seromas can be part of healing process and framework for scar tissue versus collapse in empty spaces left by surgery so not a bad thing in some cases. While I was surprised to have had some of these problems with DCIS and not a more involved diagnosis as my surgeon said it is the amount of breast tissue that is removed  that reduces the total amount of tissue present to absorb radiation and the lymph and blood flow that is disrupted with surgery and scarring that are part of normal healing process that cause many issues along the way. On the flip side, I have had pretty dramatic healing in the last month or so. I am happy with my surgery results but the process was more involved than I thought and at one point I actually saw surgeon to move onto mastectomy due to side effects. I was advised that lymph edema could increase risk of implant failure and it was suggested to wait at least a year. I wouldn't consider now as effects are very manageable. I had originally thought of mastectomy but was encouraged to try breast conservation. Ultimately, it was the recovery and surgery time with a three year old that led me to try conservation. With second surgery I felt like we had gone this far why not try one more time since I could get right back in for surgery. For me the biggest factor was finding a surgeon I really trusted who listened to my concerns and respected my decisions. I trusted his opinion and experience. We are all different so trust with your MD is so important. It is a lot to think about but important to gather all the facts. Even with the best of plans there can be surprises. I try not to second guess myself but I would encourage you to speak openly and frankly with your doctor about what to expect and why they would recommend one plan versus the other. Best of luck.

  • Jordymom
    Jordymom Member Posts: 114
    edited December 2014

    I had mutifocal in one breast (I was diagnosed with bilateral DCIS in 2007/2008, but this took 6 months of tests and biopsies to uncover it was in both breasts). I became increasingly uncomfortable with the first surgeon (the one I was referred to after the ultrasound found a 'suspicious' area) after he performed two large lumpectomies on one breast and couldn't get clear margins. I was uncomfortable for two reasons:

    1. He didn't believe in 'inking' the specimen margins with different colors so we would know where the remaining DCIS was located in the breast. All we would know was there was a positive margin, but not the location relative to the position of the tissue removed. This struck me as rather shortsighted, but I didn't catch on to this until I requested and read all my medical records.

    2. After the second lumpectomy, with a positive margin, he recommend a bilateral mastectomy with no discussion because he considered it multi-focal and because of my age (48). Of course I wondered how could he know it was multi-focal if he never inked/identified the position of the margins, so there was no way to tell if there was really a gap in the DCIS and if it was truly in multiple breast quadrants, etc. And, when I conducted more research my conclusion was that 'yes' in years past many women with multi-focal BC we treated with mastectomy, but research in 2007/2008 was changing those views.

    So, I got 2nd and 3rd opinions, a new surgeon, and underwent a 3rd lumpectomy on one side and 2nd lumpectomy on the 'newly' diagnosed side. I still had 'close' margins on one side (1mm) but enough to go forward with radiation and Tamoxifen.

    Remember this was 2007/2008 and I imagine there has been some change in how DCIS is now viewed and treated.

    I didn't 'not' have the mastectomy because I was opposed to the procedure or worried about losing my breasts (at this point I was rather angry at them for all the emotional and physical trauma there were causing). But I felt my first surgeon was just following his established protocol, with little regard for any advancements in the science of DCIS. I felt like I knew more than he did. I read a lot of journals/articles and scientific papers before I went forward with my treatment plan.

    Once I was done with the treatment, I never looked back because my second surgeon was rather wise and told me that if at any time I felt like the stress from the follow-up mammograms/tests were too much, she would book me in for the mastectomy. No questions asked.

    It also strikes me that you are being told your follow-up mammogram found more DCIS. My understanding is that only a biopsy can confirm the presence of more DCIS. I had plenty of 'stuff' and other funny areas show up on mammograms after the lumpectomies and it turned out not to be 'more' DCIS. If the radiologist can say for certain a mammogram is the definitive diagnostic tool for DCIS, then I would have further conversation with this doctor.

    Changing surgeons was one of the hardest part of my experience because it felt like starting over, but my gut told me to move on. And, to my knowledge, you have time to consider your all your options with DCIS.

    So, I guess the short answer (sorry for the long winded reply) is 'yes' you can have multi-focal DCIS and have breast conserving surgery. I did it.

Categories