Double mastectomy OR other "drug" prevention treatment?

If everything were equal, I would try to drug first, because you can always change your mind and still have the surgery later if you have SE you don't like. I am very conservative about having irreversible procedures done. And any kind of surgery has risks, and can have unintended SE too. But those you can't eliminate by just not taking a pill. Of course, you will want to hear what the specialist has to say; he/she will no doubt have insight and knowledge that may make the best way to go more clear to you. Best of Luck! Ruth

Hi Lilia. One thing that helped me make a decision about this was to meet with a high risk oncologist (and then a second and third opinion from different institutions).  Getting their estimation of my personal lifetime risk of invasive disease was really important for me so that I could determine what risk I was willing to take. All the best,

Kelly

Lilia,

Tough decisions that seem to require more expert opinions from oncologists and fact finding, in my opinion. Tamoxifen may not help you in the future, especially if your BC was triple negative!!! Only you can decide what is best..based on your risk toleration, especially given your very young age of onset. Best wishes.

Sorry for the confusing sentence above.

To clarify:

I also DO believe that no matter how many tumor boards...etc for the rest. 

n by N; we have such similar histories. my tumor in 2003 was 5mm but grade 3. we are both tn. we both live in cities named springfield! there is one in every state in the nation I hear.

I am older; just turned 55.

We both face the same fork in the road. As Yogi Berra used to say "when there is a fork in the road, take it!"    Now you know I'm from Jersey.

I do not agree with your bs putting you on tamoxifen for TN.    It's so routinely done now that my own bs said the same thing till I mentioned I was TN.            the bs would not be prescribing it anyway.           I went to a breast specialist, a female surgeon who had done an extra year at sloane-kettering specifically in breast oncology.   my previous surgeon had trained with her in oncology surgery but did not stay for the extra year for specifically breast.          they call themselves breast surgeons based on the % of breast pts they see in their practice.  so I was a bit misled 7 yrs ago.    I am a nurse and still did not know any better.

So here is my current dillemma. i have put off my decision all summer b/c I first wanted to visit my new grandson in FL.   last  april I had a big scare in my unaffected breast. after wks of testing and results, i was told that it was just 7mm of breast tissue that "lit up".        My breast specialist strongly agreed with my intention of having a pdm.   True she makes $$ from surgery, but she is independently wealthy and already has more pts than she can handle.     

Part of my decision to do it is that I am a worrier by nature.    I am waiting for the other shoe to drop.       I will never forgive myself if I allow another cancer to grow.     I was very lucky the first time that I caught it so early.        I was in a fog for the first 5 yrs; going from check-up to check-up waiting to hear of a recurrence or new primary.                 Now I realize that I am still at risk d/t the tn status.              I wish I had the mastectomy 7 yrs ago rather than the lumpectomy/radiation but that was the contemporary thinking back then.   "You get the same results either way" I was told by many docs.            That statement is being questioned in the medical literature now.    for TNs.           so much knowledge has evolved over the past 7 yrs.  I keep asking my doc if there is something coming down the pike for TNs. he tells me it is discussed at every conference but there are no preventative trials at this point.   I do go for my Evista IV treatment once a yr b/c i have osteoporosis and biphosphanates curb growth of new cancers.      I wish there was more to do preventatively. I know that exercise and diet are preventative measures.  Can't hurt to do them!          I'm leaning toward the PBM right now. it's time for me to make some appts.       first I will look at all the pix of my grandson (we never had a boy!)            I have many reasons to fight to be around for a long time, as we all do.  good luck in your decision.    

Deidre; I appreciate hearing your view "from the other side" of a mastectomy. and I also appreciate that you understand that each situation is different for each of us. It helps, tho, to hear differing opinions such as yours.

I looked at your previous posts and saw that your dad died of breast cancer. Deidre, that is a real red flag for family members.  FWIW I think you made the absolute right choice, tho I am truly sorry that it caused you so much angst and reconstruction disappointment.         It's too bad the docs did not take time to help include you in the choice, tho I really should not always blame the docs. Sometimes the situation is just horrible. You had lost a father to this dreadful disease and then you lost your breasts.    Too much loss with not enough time to absorb the grief.  

The fear that you might have developed an aggresive bc is not an over-reaction.   With regular follow-ups you might not have picked it up till it was invasive.

Maybe someday you will be at peace with your decision to do pdm.  Some fears are over-reactive for sure. But you legitimately had reason to fear for your life had you not had the pbm.   

Your post is helping me sort out my thoughts.  Loss of breasts is horrible. I know it. But down the road I see the piece of mind that I will have.      I may need to go back on Celexa b/c I have a history of depression; why wait till I am deeply depressed?           thank you, Deirdre and I wish you all the best. eileen 

Deirdre; I am so sorry that I gave incorrect info. Thanks for gently updating me on the risk of bc with an male immediate family member with bc.    I stand corrected.  

So now I REALLY get it about you regretting the bpm when you were Her negative.  My thoughts go out to you.

Thank you for recognizing that I was only trying to help, tho I now realize that some of my info is not up to date and should not be stated with such absolute certainty. 

I'm sorry you had to go thru this.    eileen