BS just called my decision crazy!! HELP!(DBL MX)

if you don't feel comfortable with your decision then take your time, there is no going back after a mastectomy, you do have plenty of time and if you don't feel comfortable with your BS, change him!

I avoided rad and chemo, but I still ended up with LE, all,surgeries can have complications.

Why not,talk it over with someone at the hospital, do you have a patient advocate?

For me, part of the thought process on deciding between a uni and a bmx was how important would symmetry be to me.It's a good discussion to have with your PS. How much symmetry can be achieved now, and what will they look like a few years down the road.

There is no right or wrong answer, no easy way out, no option that doesn't carry its own set of risks. Its a very personal decision based on your own fears and priorities. Ask questions and be as informed as possible so you can choose the procedure that fits you best. Good luck.

MizMimi- I had high grade DCIS w/ comedonecrosis on my right side. My BS recommended LX w/ radiation. Because of my strong family history, and wanting to avoid radiation and Tamoxifen I told my BS I wanted a BMX. My BS said that would be fine since it's ultimately my decision and that others have gone that route even though it was just DCIS. He wanted me to talk to a PS first regarding the procedure then schedule the surgery. Your BS was wrong in saying that it is crazy to want a BMX. Radiation in itself is a "big deal"! This is YOUR body and you're doing this for some peace of mind. I knew going in for my BMX that it wouldn't be easy but none of it is easy. I'm 100% happy with my decision! Stay strong and you may want another BS. I also realized that I may not be able to avoid radiation or Tamoxifen until I had my final pathology report after the sentinel node biopsy and BMX. Remember to go with your gut feeling on what's best for YOU!

I agree with others that it is ultimately YOUR decision but I can tell you that if my BS called me crazy, I would be switching surgeons quickly. That's just me though.

As a reminder though, since I was reminded this many many times. Mastectomy does NOT guarantee no radiation.

Another important factor is the size of your breasts. Are they overly large? Are they causing you to develop upper body muscle issues?

As someone that was definitely overly endowed, it was a relief to have the one breast removed. The problem was that the asymmetry caused me a lot of pain from my muscles trying to balance and hold me upright.

I opted to have my "healthy" breast removed with a simple mastectomy. It was the best decision I ever made.

MizMimi,

I had to respond to you.  I had a bilateral mastectomy, and I am extremely happy with my decision.  They did a mammogram, a sonogram, an MRI and a PET Scan on the "healthy" breast and did not SEE that there was DCIS throughout the breast. It was only discovered after I had my breast removed as a prophylactic measure.  You really need to go with your gut on this.  Unless they are patients themselves for the same condition, it is very hard for doctors to put themselves into a patient's shoes.  There are many many factors that go into this decision, but for me, the bilateral mastectomy decision turned out to be the right one.  If there is DCIS in your other breast or if eventually, there is a local recurrence in your breast with the DCIS, YOU will be the one paying that price, not the doctor.  They also do not understand the emotional toll of having to constantly monitor the breasts.

It's interesting that your BS said comedonecrosis cells are malignant. I thought they qualified as abnormal but not cancer and lacked the final mutation that would make them cancerous?

Edited to add that I just read that comedo necrosis cells are malignant but not invasive.

First thing I want to say is DCIS is cancer. It infuriates me when I read that DCIS does not have the capability of becoming invasive. 10 years ago I had my first biopsy that turned out to be "just AHP". Fast forward to now, my biopsy came back DCIS Grade 3 in three different spots in my left breast. One of the spots being right at the clip from biopsy ten years ago. My first thought was bmx. I didn't want to deal with radiation (which forever changes the cell structure of your breast). Because family members felt I was going overboard, I changed my mind and went with lumpectomy. Well guess what? They found an invasive tumor.

I now realize I should have gone with my gut. Will a bmx be better than radiation in the long run? I honestly don't care. I just know I will have better peace of mind with that choice. No matter what your reasoning (I have many), do what makes you feel best. I have been stressed about this since March but have been lucky enough to know 4 woman who made the choice, each for different diagnoses, and have never regretted it. One of them made that choice because of atypical hyperplasia and her mother had passed from bc. I feel that if a recurrence does occur, at least I will know I did everything I could do.

Best of luck Mizmimi

mizmimi

My diagnosis was almost exactly what yours was! And NOT ONE of my surgeons said I was crazy for choosing NSBMX. I too get frustrated when people say it is not cancerous.  It is and it can become invasive and then you are in a whole different ball game with having to have chemo! 

I was originally at Sloan Kettering and the options were Lumpectomy w radiation and Tamoxifen for 5 years or mastectomy.  I, just like you, did not want radiation or tamoxifen.  I did a lot of research and spoke with my gynecologist.  I felt it was not the right choice for ME. I went in to speak with the BS again and said I will do a lumpectomy but no radiation or tamoxifen, she said then you should do a BMX.  I will say I had been thinking about this for years because my mother had BC 2 separate times so I knew my risk factor cancer was very high so this was not a quick decision for me but one I had thought about for years.

 I deep down inside felt if I went with a lumpectomy that I would be back in the same position sometime in my life.  And maybe it would be invasive at that point.  I could not live with that. In the final path report they found ADH in the healthy breast so there was a good chance that would have become something eventually. 

I think if you have done all the research...you will come up with the decision that is best for YOU.  What deep inside of you feels is right.  Trust yourself.  And like someone else stated please see a few plastic surgeons...because they don't always give you the best options for YOU but instead the option they feel they can do.  I went to 2 PS at Sloan one wouldn't even do nipple sparing the other said she could.  I eventually went to a third PS who specialized in a flap procedure that is not as common( which is what I really wanted- I knew my body was right for it) and I got the reconstruction I wanted! Please find the right doctors for you!  It is so important to have trust and faith in them.

Good luck I hope some of this helps you with this difficult decision.

If my BS was that condescending towards me, I'd be finding a new one ASAP.

I am 4 days out from my BMX with no recon. I had an initial diagnosis of multifocal DCIS, grade 1-2. I'm sure there are some people out there who think my BMX is "overtreatment" for "just" DCIS, especially low-grade, but I don't care. They aren't the ones living my life, the ones who get to do a mammogram every few months and then deal with the subsequent worry and "what-ifs" and maybe the mammo doesn't pick up on the cancer growing in my very dense breast, the ones living with possible regret if I ultimately get cancer and have to do this all over again when I'm older and my body doesn't bounce back from surgery as easily. We live in a time of incredible advancements in medical care, but unfortunately the "experts" just don't know yet which DCIS goes on to become invasive and which doesn't. Maybe it'll happen in my lifetime, and other women will be spared the indignity of an unnecessary BMX, but we're not there yet.

YOU are the one who has to live with your decision for the rest of your life, and only you can decide what's best for you. If you haven't gotten a second opinion yet, I highly suggest you do so.

Hugs to you.

I wasn't told I was crazy but many doc's questioned my decision even though I had a highly aggressive her2postiive stage 2 cancer.  In Canada anyway breast conservation is what they all recommend when possible.  I think regardless of what type of cancer you have if you are a lumpectomy candidate and choose mastectomy for the reasons that are important to YOU then that's all that matters.  Of course its not an easy decision,   mastectomy is a lot bigger surgery with more risk for both short and long term issues (pain/range of motion/LE) etc

I am going to chime in. MizMimi, I think you should really consider a bmx (and even a umx) if your DCIS can be treated with a lumpectomy and radiation. I understand that you want to avoid radiation. However, you need to weigh a lumpectomy and radiation against a bmx. A mastectomy with reconstruction is not an easy surgery. A fair number of women have complications. Some women wind up with post mastectomy pain syndrome. All of that for breast mounds that do not have normal sensation. Consider carefully what it would be like without nipple sensation. I know my sex life has suffered - I miss nipple sensation, a whole lot.

Find out about the possible complications that could result from a bmx and reconstruction. Compare that to the possible complications that could result if you have a lumpectomy and radiation. Many doctors do not do a good job of fully disclosing possible complications. Look at pictures of women who have had reconstruction. Do you like the way their reconstructed breasts look? (that exercise made me decide not to have reconstruction. How long can you be out of work? The recovery period for a lumpectomy is much shorter than for a bmx. Make a list of the pluses and minuses.

I agree your first surgeon had a lousy bedside manner, but don't make your decision based on his behavior. Find out why he said what he did and then ponder your options.

I chose a BMX for DCIS and IDC was discovered. I am very happy with my decision and also very pleased with my reconstruction. Everyone is different, but, you have to do what is right for you and move along. I didn't want to have to go through this again is why I opted for the BMX. Also, I would have had to have work on the other breast for symmetry.