radiation or more surgery???

Hi - I don't have much in the way of advice or information but I don't like to see your post sitting here without responses. I have a similar situation. Two spots of DCIS, lumpectomy and re-excision and still not a good margin. I am having another excision in about a week and a half. I also have a blood issue that will likely mean I can't take Tamoxifen.

 A pathologist read my slides and says he feels the DCIS is so widespread a mastectomy is unavoidable. Two breast surgeons have already said they don't agree. It's frustrating because I think the imaging is so shaky - I had an MRI that showed nothing. Recent mammograms are "unimpressive" according to my surgeon.

Part of me thinks that if there is a recurrence in a few years maybe the treatments will be better? And another part of me is also very afraid that the recurrence will be worse, more aggressive and invasive... so I'm on the fence.

I'm going to have another excision, and my surgeon seems willing to do one or two more beyond that for margins. Like you I would like to avoid mastectomy.

One thing that bothers me is how little consistency there is. You seem to have been tested for HER2 - my first surgeon told me they don't test for that. So that's disappointing. In Philadelphia there is a doctor who feels that the presence of HER2 is predictive of a more aggressive cancer returning at some point. I am thinking of sending him my slides for testing. Maybe you can take some comfort in the fact that your DCIS is negative.  

Bottom line is, I'm going to try really hard to get good margins and do radiation. At some point I may just have to have a mastectomy but I'm not going without a bit of a fight.

Are you confident in your surgeon? Do you need a third opinion? My surgeon is the 5th one I've visited. I feel good about him and my upcoming excision.

Best wishes. 

goldee4 I can only tell you what I would do in your case but I don't have a medical degree and I'm no specialist in breast cancer. Personally I think your 2nd surgeon might make sense due to the  fact it was in more than one area and especially since hormone therapy isn't an option for you. BUT I would recommend getting a 3rd opinion. I tend to want to go more aggressive. I really don't know the issues with DCIS.

Just remember that both these surgeons might be right. Cancer is so unpredictable. Many times treatment is their best guess based on past statistics. It might come down to how aggressive you want to be.

Hi Goldee

I am so sorry you are going through this and then having such conflicting information.  I think this is the nature of DCIS--it is treated differently depending on where you are in the country.  There are some women who have sent their pathology reports to specialists to get another opinion.

It's important to remember that Breast Cancer is a multi-focal disease.  I know that DCIS is not life-threatening, but it could become that way.  My doctors told me that mastectomy vs lumpectomy + radiation have about the same outcome for recurrence.  

I chose a unilateral mastectomy after having a lumpectomy with large excision and poor margins.  I have a strong family history of breast and ovarian cancer along with many other cancers.  My breast was very small (less than a A cup) and they took a very large excision the first time.  My DCIS was grade 3 and I had not had a mammo in 3 years when it was diagnosed.  I was concerned about the ratio of DCIS to my breast tissue--so I opted for the mx.  It is not an easy decision but I am at peace with what I decided to do.

I had consultations with radiation oncology and plastic surgery well prior to making any decisions so that I had enough information to make my decision.  I also consulted an outside oncologist about my pathology.

I think getting another opinion my be helpful for you.   It's important to have peace about your decision and with DCIS you do have some time to do that.  Peace to you!

linfer   I first had a stereotactic biopsy on March 25 to determine what my lesion was.  I had burning pain from that.  I found out on March 27 that I had DCIS. During the time between the diagnosis and the lumpectomy, I met with a radiation oncologist and a plastic surgeon.  This was to discuss treatment options, side effects, etc.  I knew that I would have to decide between lumpectomy + rads or mastectomy.

Then I had a lumpectomy on June 2.  My margins were not "clear" so I had to have more surgery.  I did not have too much pain after the lumpectomy.  My BS injected a local anesthetic after surgery which really helped to block pain from starting.  I had another major surgery the same day (total vaginal hysterectomy with removal of ovaries) to treat problems that I found out about around the same time as the DCIS.  I had no problems recovering from that surgery, either.

Due to a number of factors that were specific to me I decided to have the mx, which I had on June 28.  The decision you make should be your decision that you make with your doctors after getting informed. 

As far as time frame from diagnosis to treatment, I had several months to think about what I wanted to do.  I met with the radiation onco and PS right after my diagnosis to get information.  I had that information for two months prior to my lumpectomy.  I think that it is important to have all the information you need prior to even starting your treatment so that when lumpectomy results come in, you know what  you will do depending on the results.

Have you met with a radiation oncologist to find out what type of radiation you will have and all the SEs?  Have you met with a reconstructive surgeon to find out what your options would be?  

 This is a difficult time--getting all your questions answered is so important to your peace of mind.  Peace to you! 

Hi Goldee. I am in UK and my diagnosis was very similar to yours, pure DCIS in a very small boobie. We don't have the luxury of a second opinion here but the advice and care we get is second to none. I had lumpectomy but did not get enough clearance on 2 margins. Rather than have him digging about in there again, I asked my BS for Mx and he agreed, had it done on 20 Sept, immediate Stattice (I think you call it Alloderm) reconstruction with TE initially as they need to stretch it a bit!! In the pathology following the Mx they found almost as much pure DCIS again as I was originally diagnosed with. I thought they would find some by the very nature of DCIS but given how much they found, I feel that I made absolutely the right decision to have the Mx and do not regret it a bit. I will have my exchange surgery and other breast enhancement done in a few weeks and then it is all done, That is the best result for me. No more worrying and get my life back on track. Hope this helps, xxxxx

Goldee  It is all-consuming when you are at the initial stages of getting information and trying to make the right choice.  For me, knowledge is power.  I think a surgeon's point of view may come from where they were trained and their long-term experience. 

What kept echoing in my mind was my dad's (a retired surgeon) comment--cancer is a multifocal disease and must be treated as such.  Mx and excision + rads are equally effective in preventing recurrence and that's the bottom line.  

My BS' advice was to start small with lumpectomy.  She assured me that we can keep going forward with excision, but we cannot go back once the breast is gone.  That was very helpful to me.  I knew I would keep my options available starting out with a lumpectomy.  Once I had the pathology report from the initial lumpectomy, the mx decision was very easy for me to make.  It was crystal clear what I wanted to do and I am at peace about it all now.  I was fully aware of all my options prior to the initial lumpectomy.  

Every person is different as was illuminated in the experience of your sister-in-law and the BS...she was very comfortable with her decision, however, that does not mean you will be.  And that's okay.

I hope you will get the answers soon so that you can be at peace with your decision.