Recurring DCIS: Radiation vs Mastectomy: How do I choose?

@prarysky Thank you I have decided on left breast mastectomy because the DCIS was wide spread throughout that breast. Did you opt for reconstructive surgery? That is my next decision! This is all so hard!
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@myoga

May I please ask a question from your comment? I am in a similar situation and deciding on a BMX versus a DMX. Since you had one and your sister had the other, I am wondering about chronic pain syndrome/phantom freezing/numbness of having one versus the other. Thank you.

@prarysky I had ILC in one breast. My surgeon said surgically the likelihood of reoccurrence if I chose radiation and lumpectomy I was 15% and if I chose a mastectomy it was 2%. I chose bilateral mastectomy because I didn’t want radiation and I wanted identical breasts afterward. I made this decision for two reasons. First, ILC is a sneaky cancer and you don’t know going into surgery whether or not the surgeon will be able to get clean margins or if there is concern in your lymph nodes. I had a friend who chose a lumpectomy only to find out the surgeon couldn’t get clean margins and they had to go back and do a mastectomy after she healed and had radiation. Second, my plastic surgeon said there is very little he can do to address radiated skin. Anyway I am very happy with my decision. I wish you the best.

@michelenyny
My understanding is that they are the same type of surgery. BMX means bilateral mastectomy and DMX means double mastectomy, both refer to removing both breasts. We both went flat and have experienced no chronic pain syndrome or any other pain. The surgery site is still a little sensitive for me but no numbness. I went through physical therapy to get my full range of motion back. She didn’t have problems at all. Let me know if you have any questions. There are quite a few members with mastectomy. Please share experiences. Wish you all the best.

I had bilateral mastectomy last year, mostly to avoid radiation. I am convinced it was a good decision. Have read about too many women doing lumpectomy and radiation, only having to do an eventual mastectomy a year or two later. Why worry about that. With a bilateral mastectomy, reconstruction has a nicer outcome, plus I had already had biopsies in both breasts in years past, and didn't want to go through that again, either, so, bilateral. It doesn't mean you won't have recurrence, so discuss this, too, with your oncologist. I am one year out and have another BB sized bump near a mastectomy scar that will most likely require biopsy in October, when I have another ultrasound to check the size. My opinion is to get rid of bumps and lumps and the surgeons most always say, the only way to be certain is to do biopsy. Why put it off. I don't want to keep checking it for two years only to have it turn into a higher birads number. Why. I don't believe in giving cancer second chances. It will come back. We don't know , other than age, why my body stopped killing off the cancer cells, but now that we know it has, I don't believe in magical thinking. I don't have enough years left, to gamble.

Back when I was 43 (35 years ago) and got a DCIS diagnosis, with dense breasts I opted for a mastectomy, plus chemo after. No radiation, no reconstruction, I wanted them to leave me alone. I was good for 30 or so years before a recurrence. The surgery plus chemo baldness, as well as having 4 children ages 5 to 10 and one 17, made me quite depressed. But that subsided when chemo stopped & I felt like I was recovered, with new hair.
Every checkup went well for so many years, I'm glad for what I did.
Now that I'm old I'm still a candidate for radiation if I want.
Recovery from mastectomy even 35 years ago was not hard.
Wishing you well in your decisions. Hugs!

@julesofnp Feel confident in the decision you have made because I know you put a lot of thought into it. Yes, I did opt for reconstructive surgery with the goal of trying to return to my original self. My experience was not the best, however, because I was one of those people who had major discomfort with the tissue expanders. Once I got those removed about 5 months later, things improved considerably. Please note that many people do not have major discomfort with the expanders.

Had I been a candidate for DIEP reconstruction, that would have been my first choice. Two plastic surgeons agreed that I was too thin to do this surgery. If you are interested in reconstructive surgery, I'd recommend trying to get at least 2 opinions. I elected to have saline implants which are now in the minority. Silicone implant safety has improved significantly and some plastic surgeons in my area will only use silicone. I trusted my plastic surgeon who uses both types. Given my age (75 at the time of surgery), I wanted to reduce potential risk even if it was small with silicone.

And yes, it is hard! But you will get through it one day at a time, one thing at a time. Give yourself grace. Sending good thoughts your way.

@wews Thank you for replying! I chose the double mastectomy largely because the pathology from my biopsy indicated the cells were grade 3 with a high Ki-67. Given that the cancer cells were more aggressive, I felt the double mastectomy was best. My breast surgeon told me my recurrence rates would be the same with the double mastectomy vs the lumpectomy with radiation. I'm sure she was going by the hard facts but I told her I could not ignore that grade 3 and made my decision on the basis of that, rather than the clinical stage.

Hope things continue to go well and there are more positive research findings for ILC.

Hello.

I am so sorry you are experiencing these very difficult recurrence issues. I imagine you are feeling fear, worry, and concern about your decisions.

I feel that Second Opinions with added major cancer center specialized MDs would be very helpful.

Have you consider requesting that your hospital and MDs order Advanced GENERICS assays and tests? The Advanced Genetics tests would provide added data that would be helpful in determining your Risk of recurrence and evaluating your options along with MDs.

I Have you considered appointment with the hospital MSW, or PhD or MD counsellors to discuss your understandable stress and fears ? Your hospital should provide the Services FREE or accept insurance… I feel these options s would offer you support and added perspective and input.

RED DOOR? I feel that Red Door has been helpful. They offer FREE Support Groups, Reikki, Meditation. etc. The Red Door Support Ground might be very helpful.

I hope you receive MD Second Opinions at added academic centers and support with your options and recover soon.

Best,🙏

S.