Contemplating Second Surgery

rocityroc · May 2016

I was diagnosed with Her2 positive Breast Cancer in 2014 & had a lumpectomy, Chemotherapy, Radiation & Herceptin. I am now regreting not having a Double Mastectomy. I am wondering if its too late to go back to my surgeon & ask for this surgery. I have had my Dr. on at least 2 occassions find lumps in both breasts which have come back negative but the stress this puts me through until I am sent for a Mammogram & the results are torturous especially after what I just went through & having lost a first cousin to breast cancer this past December. Does anyone have any thoughts if a Dr. will re-visit surgery for me 2 years post? Am I just crazy or does this seem reasonable?

jkbrca2 · May 2016

I don't think you're crazy. It's very reasonable if you think it would give you peace of mind, and you think you might be comfortable being flat whether you opt go flat, wear forms, or ultimately reconstruct. I'm one of the few gals on here who had a preventative bilateral mastectomy, due to heriditary breast cancer gene mutation. Three generations ahead of me had it. I hated the annual mammograms and MRIs for surveillance. They produced a lot of anxiety. I'm nearly a year flat and enjoy the freedom knowing I reduced my risk as much as possible.

I think it's definitely worth asking! What's the worst he/she could say? No? Maybe go to another breast surgeon in that case. To have insurance cover it, maybe they could classify it as "reconstruction" of sorts to be symmetric? Breast surgeons must get this request more often than you'd think.

I_Spy · May 2016

Of course it is reasonable. It is the hardest decision I ever made. I had a lumpectomy the first time; I had a BMX when my breast continued to grow things it shouldn't grow. Have any of your follow up mammograms required a new biopsy? Maybe ask to see your breast surgeon after your next follow up mammogram, and discuss it with him/her. If there is no new finding, it would obviously be a prophylactic BMX. The bs will be happy to discuss the statistics with you regarding recurrence with and without BMX. It was the hardest decision I've ever made in my life, and it is extremely personal -- only you can decide what is right for you, after reviewing all of the data. Start with talking with your bs.

Erica3681 · May 2016

Have you had genetic testing to see if you carry the BRCA gene mutation? If so, that would give added reason for a mastectomy, which virtually all doctors would support. But I agree with the other posters that, in any case, it's understandable how you feel and you should definitely speak with your doctors about it.

tuckersmimi · May 2016

I do not have anything to add to what others have posted, and however I too am thinking of doing the same thing.
I`ve only discussed it with my husband, none of my doctors (yet) and am happy to say my husband supports whatever I decide 100%.
Now if my surgeon and insurance will as well that will be big, if and when I decide to do it.
The best of wishes to you.

glennie19 · May 2016

It is completely reasonable for your peace of mind.

rwiley4529 · August 2016

I am 2 years out from diagnosis. I had a lumpectomy, chemo, and radiation, and felt comfortable with that course of treatment.

Last month I had my annual mammogram which resulted in a diagnostic mammogram, ultrasound, and MRI, all of which turned out to show no recurrence. But, due to the anxiety that I went through with this round of tests, I've decided to have a BMX with no reconstruction. My husband is in complete agreement with my decision. We met with my surgeon this Wed, and she said I certainly was not the first woman to make this decision.

Today was my "every 3 months" appointment with my RO. We discussed my plans for BMX, and he, too, said it was not an unreasonable or uncommon response to this year's tests.

My surgery is scheduled for October 3.

sh2015 · August 2016

I am a year out of surgery and went through radiation. I just had my first mammogram and it was clear. I'm going to ask for at PET scan as my tumor was very close to my chest wall and I've read where it may drain to a node in the chest as opposed to the sentinel node.

I'm also thinking seriously about a double mastectomy because I just don't think I can go through this every year. I'm taking Arimidex and having some side effects (TERRIBLE hot flashes, joint pain, weight gain, no sleep etc) and would like to get off of that. Does anyone know the percent that Arimidex is supposed to lower the risk of recurrence? I've heard a couple different numbers.

If I get off the Arimidex and have the double mastectomy, does that lower my risk?

Moderators · August 2016

Hi Nb2015-

We want to welcome you to BCO, and let you know that we hope you find support in these forums.

You might want to check out our thread on Arimidex: https://community.breastcancer.org/forum/78/topics.... Lots of info there, and you can get some feedback on Arimidex from other members who're currently taking it.

The Mods

Jennie93 · August 2016

nb, I was told that the Arimidex cuts your risk in half. That is a pretty big deal. The idea is, you are cutting the risk of it coming back in some other part of your body, so it makes no difference if you had LX, UMX, or BMX.

PoppyJQ · September 2016

I had lumpectomy, chemo, radiation in 2012/2013. This past year has been filled with mamo callbacks, biopsys, ultrasounds, worrying and lastly a surgical excision of an area of Atypical Hyperplasia. The core biopsy diagnosed it as Hyperplasia, no big deal but my oncologist said it should come out. Pathology on it after being surgically removed showed DCIS (guess I dont trust biopsies now). Treatment for DCIS would be removal (done) and radiation. Since I've already been radiated as some of you probably have also, the next step according to my doctor is a mastectomy.

It was good to read your thoughts and I hope you are all able to talk with your doctors about it. After the initial shock I have been relieved to have the bilateral MX done in a few weeks and be free of some of these worries. I know its not 100 percent but constant worry and invasive procedures is no way to live.

Currently I'm struggling with the concerns about reconstruction due to the radiation. I swear I didnt know that would be such a potential problem.

sh2015 · September 2016

Thanks for the replies. The last time I talked to my MO he mentioned something about a 2% risk reduction. I realize it will be different for everyone and will talk in more detail next month with him. I also could have misunderstood as we talked about a number of things!

It is very helpful and comforting to know that I'm not the only one thinking of doing something like this. Alot of people think is it extreme but I'm still of the mindset that if it can help me to worry less it might be a good idea.

rwiley4529 · September 2016

I am having a BMX on Oct 3. For me, it has very little to do with reducing the risk of recurrence... it's much more about reducing the anxiety that goes along with annual mammograms.

Contemplating Second Surgery

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