Had LX but now want MX

SpriteB

Here's a little background. I'm 37 and have no family medical history as I'm adopted, so I had genetic testing done. When I was Dx I was so scared and I just wanted the cancer out and wanted to get chemo and herceptin started ASAP. I was also completely sure that the genetic testing was going to show that I had the BRCA genes so I opted for the LX thinking that I would undergo a bilateral MX next year after chemo was finished.

Well, genetic testing came back negative which is great. But now I'm wishing I would have just had the bilateral MX to begin with.

Im wondering if a bilateral MX is even an option now? If my BS would even consider it? If my insurance would pay for it? If so, could I have it after chemo but when I was still on herceptin? If not, would I have to undergo rads since the MX wouldn't be for a year.

I'm going to call my RN case manager and ask her about it but I'mjust wondering if anyone here has had a similar situation.

Thanks in advance!!

sandilee

By LX, do you mean a lumpectomy?

Why do you want to lose your breasts at this point? Are you afraid of radiation? I'm trying to understand what you're going for here. I think most surgeons would be reluctant to give you a bilateral MX without a reason.

I think it would make sense to talk to a breast specialist- either a surgeon or an oncologist- to go over the statistics regarding recurrence with and without mastectomy. I think it would ease your mind.

We always are looking for ways to control this beast, and if you feel you have a better understanding of the recommendations they are giving you, and why they are giving them, it should help. It's so hard to wrap our heads around this when we are first diagnosed and treated. Best wishes.

jlstacey

SpriteB, talk to your surgeon. I think they would be open to this and I think insurance might cover it.

I am choosing to have a bilateral mastectomy and I know the statistics. I don't have any gene mutations. I talked to my oncologist this week as I was still on the fence about umx versus bmx. He basically told me I have to weigh quality of life- will I wake up every day worrying that I'm going to get cancer in my other breast? Or will I be able to get on with life satisfied with the decision I've made to have a umx? I'm a worrier by nature and I know that I will worry so I'm going with a. Bilateral

proudtospin

no experience but betcha that they will work with you, now breath a sigh of relief that you do not have the gene

gypsyjo

SpriteB, You are under treatment so the need to rush is gone. Take a deep breath. Take some time to understand your risks of additional surgery vs your risks of reoccurrence. It sounds like you need a little more information before making another decision. You have the time now and the resources to understand where you are at, where you want to go, and why. There is no one right decision and there is no wrong decision. Once you do that, I think you will feel peace. It does get easier as you get more information.

debiann

SpriteB,

Yes, you can still get an MX and yes insurance will pay for it. You do not need to wait till your year of herceptin is finished.

I had an lumpectomy last April, chemo May-August, and bmx with diep recon in September. One dose of herceptin was delayed a couple weeks due to the surgery. I did not need rads.

Good luck to you with your decision. There is no right or wrong answer, just what feels best for you.

JaneQPoppy

I just joined the forum for myself, but this topic jumped out at me. I have a good friend who was diagnosed with DCIS and immediately opted for the bilateral radical mastectomy. She does not have the cancer gene.

That was about three years ago. She works in a plastic surgeon's office and said she did it because she sees lots of recurrence in the other breast. Looking back, she says if she had it to do over, she would have had lumpectomy and then just dealt with a recurrence if and when it happened. She acknowledges that she (her own words) overreacted.

FWIW. It's a tough decision. Best of luck with it.

RosieMjdtrt

I know this is somewhat older post but I can relate. I was originally told DCIS grade 3. Even at point I was leaning towards bmx. After MRI I was told there might be a micro invasion. Again, thinking I will go with bmx. I knew I wanted peace of mind and was not thrilled that radiation affects options. I brought my parents (I'm 45) with me to my BS appointment. After hearing how much more invasive the bmx surgery is compared to lx and that a bmx won't improve odds by much, they told me I was being too paranoid choosing a bmx so I went with lx instead. Pathology found 8mm invasive tumor. I am now going to go with bmx and no radiation. No matter what your choice is and for no matter what reason, don't let anyone tell you you are making a bad choice. I believe your insurance has to cover it because it is a form of treatment. BEst of luck to you and I wish you peace with your decisio