Desperate for Advice -- Unilateral or Bilateral Mastectomy?

Willow816

Hi Everyone,

I am having a very hard time choosing between having a unilateral mastectomy or a bilateral mastectomy, and I could really use some opinions/advice/stories from woman who have also had to make this difficult decision.

A little background information: I was diagnosed with triple positive invasive ductal carcinoma grade 3 (1.6 cm)  in August of 2012 -- 2 days before my 23rd birthday.  I ended up being treated with targeted therapy which consisted of Herceptin, tykerb, Lupron, and letrozole.  I am now taking tamoxifen for 10 years.  My tumor responded immediately.  After 6 months of medication,  I had a lumpectomy and sentinel node biopsy which resulted in negative margins and 0/8 nodes.  I followed up with radiation.

Fast forward 4 years: I am now 27 and cancer is back.  It is in the same area of the same breast; however, we are not yet sure if it is considered local recurrence or a secondary breast cancer because pathology results regarding the specifics of the tumor are not back.  The only thing that I do know at this point is that it is invasive ductal carcinoma and measures 5mm.  Naturally, my surgeon and oncologist are recommending mastectomy.

Here is the problem: I immediately decided that I would get a double mastectomy with reconstruction because of the recurrence.  However, my surgeon does not believe that a double mastectomy is necessarily warranted because of the small size of the tumor, and is recommending only a unilateral mastectomy.  I am aware that having a double mastectomy does not necessarily increase survival rate, and I've been told that breast cancer is just as likely to come back somewhere else in the body as it is in breast tissue, but I just can't wrap my head around this.  As I'm sure with anybody, I'm having a very hard time with this recurrence --- especially since I initially responded so well to treatment.  Furthermore, I am still on tamoxifen, and I am afraid that it is not working or that the characteristics of the tumor have mutated.  At this point, I'm feeling like I'm never going to be safe no matter what I do.

I just need some advice on what others in similar situations have done in the past.  Did you have a unilateral or bilateral mastectomy? What was your experience with either one? What is your opinion on what you think I should do? I know its hard to say, but no one I know has been much help because they have never been through this.  I just really need some help with making this decision.  Your experiences, stories, and opinions are so greatly appreciated.  Thank you.