Anyone with both breasts???

sept45

I have small DCIS with ICS (less than 1cm on right and 2.5 on left) in both breasts. I'm trying to decide on treatment. The surgeon wants to do lumpectomies on both sides followed by radiation on both sides. Has anyone had this done??? I was assuming bilateral masectomy but she said she didn't recommend it but would do it if I wanted. I am highly ER+ and PR+ HER2- low grade. I am having genetic testing so if that comes back positive it will change things.

RangerMom

Sept45 - I had cancer in both breasts simultaneously. One side was ER positive with a rather large tumor, and the other side was PR positive that had spread during chemo. The ER side shrunk in half. My surgeon felt it was an obvious decision to remove both breasts, even tho initially the PR side was in situ. I had 33 rads on the right side only. I didn't do reconstruction. I thought about it but actually I'm fine with being and feeling womanly without them. My genetic testing was negative.

I can't tell you which way to go, but just offer my story.  I had a spot of mets in my spine during the initial chemo treatments. We are all so different, our cancers are different. Its best to listen to all the docs, then listen to your gut. If I had lumpectomies, it wouldn't have made a difference in my case. Its a tough decision to make, keep asking people with BC and maybe even a second opinion. It will help you make up your mind. Maybe get clear on why she doesn't recommend bil mx? What does your onc suggest? Wishing you peace of mind on the decision you make. You will be okay, no matter which way you go.

Linda

sandra4611

Sept45,

I had cancer on both sides but it was not found on the second side until the pathologist saw it after my double mastectomy. It was missed on the screening mammogram, the magnification mammogram a week later, and the MRI on both breast prior to surgery. The sterotactic breast biopsy showed my cancer was DCIS, small but an agressive type. I only had 3 days from diagnosis to telling my surgeon my decision. Although his nurse said the usual course of action was lumpectomy and radiation, I realized I didn't really understand what those were. I researched on the Johns Hopkins website and Mayo Clinic website, learned more about cancer than I ever thought I would need to know, and decided that I didn't want to take the chance that a lumpectomy wouldn't get it all or that cancer would return later or that it would show up in the other breast in the future (little did I know it already had.) Learning about radiation was a real eye opener and I knew I didn't want it unless I had no choice. I walked into the surgeons office ready to plead my case for a more radical procedure, but was shocked when he said he agreed completely and asked when did I want to do the surgery? He said since my cancer was small, in all likelyhood there would be no lymph node involvement yet and the mastectomy would get it all. I would not need radiation or chemo. He was right. The sentinal node biopsy on both sides should no lymph nodes were affected. The pathology report on the undiagnosed side showed LCIS, again an agressive type, so I couldn't be happier with my decision. Although the surgeon tries to get all the breast tissue, it is virtually impossible. But the chances of cancer reoccurring in the tiny little bit of breast tissue I may have left is 1% - 2%. I can live with those odds.

Gully

 Sept45. I also had cancer on both sides but the right side was not found until after the mastecomy where it was found in pathology. It is a personal decision really. I did it for my peace of mind and dont regret it. Something also to consider is that I did not have to do rads which you will have to do with lumpectomy. Rads exposure has been linked to heart disease in later life. Just something to consider. I also did chemo 4 rounds of TC because one of my oncotypes came back at 19. I though bilateral bc was a really rare occurance, but have met many people on these boards that have it, or have found the second shortly after treatment was over for the first. Go with your gut, its what you can live with on a day to day basis really. Good luck with your decision.

ironmagnolia

Sept45--I too was diagnosed with bilateral BC this year. Original tumor in right breast was found by mamo in Jan 2013, then one week later, BS wanted to do MRI on both to make sure that nothing else was going on before she took me in the OR for lumpectomy... and I hit the BC lottery. All mamos and US the week before had missed the left tumor, which was larger. My BS said, "you are no longer a candidate for lumpectomy with rads, we need to get rid of all your breast tissue because, for whatever reason, you seem to be growing these things. I recommend bilateral MX with immediate reconstruction". 

I feel that you should get a 2nd opinion. I was just today reading an article by Dr Susan Love, and she stated that when you are diagnosed with BC, it is not an emergency. You have time for, and should make time for, a 2nd and if necessary, a 3rd opinion.

I have heard/read that radiated tissue is much harder to perform reconstruction on later if you have a local recurrance and need mastectomy later on. It can be done, but results could be less than if the tissue had not been radiated in the first place. You need to look into this just so you are aware.

Also, make sure you are dealing with a very experienced BS, one who does primarily breast surgery and deals with BC on a regular basis. And if you decide on mastectomy with recon, see a PS that will give you all the options, both implants and all types of flaps. Many times, you'll only have recommended what the PS is trained to do, not all the options out there available to you for recon. 

As it turns out, I feel fortunate now that I was diagnosed with bilateral BC. Thought I was a goner at the time, but BS said my prognosis did not change, they go by the statistics of the poorer of the two tumors for your prognosis. Had my BS not ordered the pre-op MRI (not the standard of care, by the way), I'm sure I would have had a poorer outcome, with a poorer prognosis when the left tumor was eventually found, probably years later. I had my bilateral mastectomy, no nodes involved, immediate DIEP recon, and luckily, my Oncotypes were low enough that I did not require chemo.

I'm glad to know that I have done all I could possibly do for the best overall outcome for my situation. And remember, all BC diagnosises are different, no two exactly alike. 

sept45

Thanks everyone! 

I met with my ob/gyn and a plastic surgeon this week. I got names for a 2nd opinion but may wait until my genetics testing comes in to go see them.  They are testing me for BRCA but also for another gene called PTEN and when reading about it I can totally see why.  If either comes back positive then the decision is very easy.

My surgeon is very experienced and I really like her.  I talked to my OB/GYN about it and he said he suspects a 2nd opinion would be the same as with the info we have so far, lumpectomy seems reasonable. The tumors are .7 and 2.1 cm with the IDC portion .4 and 1.1 and I am a 38DD so they think I will have good cosmetic results. He gave me several names to go to for a 2nd opinion, one near my home that he really likes.

The plastic surgeon was awesome! We went over all of the possibilities from lumpectomy +rads to double mascetomy. I had planned on a reduction/tummy tuck in 2-3 years so we discussed that too. He said we could do that after radiation it is just a little more complicated as you have to be very aware of where the cancer was and also where the blood supply is for the nipple but it wouldn't be impossible.  Rads also can shrink your breast so I might not need it. We went over all of the options for reconstruction and eliminated a couple. He gave me his home and cell numbers for questions.  We did the initial pics and measurements so I would have one less thing to do if I choose double mastectomy.   If I decide to do it I'll go back in to figure out which type of reconstruction I want. He said DIEP should give me a B or small C but there is no way to be sure until we get in there. We vetoed TRAM and the one from your back so the other option is implants.  Anyone have thoughts on that?  What did you have done and are you happy with it?

I meet with the radiology oncologist next week to discuss how that would work with both breasts, possible side affects etc.  Right now my gut is telling me to get a double mastectomy and my brain is saying try the lumpectomy. I'm going to sit on this for at least a week and then revisit. I have a meeting with the surgeon on 10/8 to discuss again but the PTEN test will be back around 10/15 and of the two genetic tests I'm more worried about that one than BRAC.

Thanks so much for all of your replies!  I really appreciate it!