Discussions

Hi everyone! I have a 2nd opinion appt. tomorrow regarding prophylactic mastectomy and hysterectomy. BRCA1 positive, age 28, 2 very young children, mom died age 40 from breast and ovarian. I am having a nervous brain freeze and can't think of what questions to prepare for the doctor! I should have done this sooner... Any suggestions on what I need to ask? Thanks for your help!   Heather

Hi Heather,

It's good your getting a second opinion.  I didn't but that was only because I was very confident in my diagnosis and recomended course of treatment.  It's really importent to feel fully confident.

Some questions I would think important are;

1. Is the diagnosis correct?

2. Is the imaging adequete to proceed with treatment or do I need further imaging?

3. Should I have genetic testing before proceeding with treatment?

4. Would I benifit from sustemic therapy before surgery?

One thing I have found is it is sooooo important to feel confident in the advice of your doctor.  I have found a great team and it was all because I ask a million questions.

Hope it goes well for you.  You'll be in my prayers.

Alice

Heather, Have you contacted F.O.R.C.E. (Facing our Risk of Cancer Empowered)?  www.facingourrisk.org   If you have not contacted them, I urge you to do so. This is a national organization with local chapters for women in your situation.  They were extremely helpful to me. 

Geri

 Heather,

Alice is right it is important to be confident in your doctors. I went to the website and printed out information. Highlighted what I did not understand and asked the doctor.

You are smart having a second opinion! So you are more confident than you think,

Blessings,

Crismatic

 Take that second opinion. Be sure you always have someone with you as two sets of ears are better. I found everything over whelming and I could not process everything that was being told to me. I had my cousin go with me and then I had someone to talk to afterwards. My prayers are with you.

HI Hun. I know this is so scarey.  I too have a hard time wrangleing questions for the appts. You said you were pos for brca1.  what about brca2?  I can tell you what i am doing.  I was neg for both the normal brca mutations. But i am positive for a new mutation, that they dont know what it will do.  I am going in on the 18th for a bilateral mastectomy, hopefully with immediate reconstruction.  I am not comfortable gambleing. It has been an aganizeing time deciding, the girls can tell you, im not my usual class clown self.  No one, not even the drs can tell you what to do sweetie.  But, what i have learned is this.....Do research, read and read some more. Talk to girls that have had the surgery. talk with your family and doctor.  When ou make your decision, dont look back.  That is sooo hard to do, but it has helped me.  I would suggest also talking with Martina, (shes in cali for a week) and Cajun Lady.  They have been thru this. I know this is tough, especially because you are so young. Me, im pushing 50.  I can tell you also that my radiation oncologysts sister tested pos at 28 and she had bilateral mastectomy with reconstruction.  We are here for you, and we will back you in what ever decision you make! hugggggggggs 

Thank you all so much. I went for my appt which actually ended up being with the internal med doctor.  She was great, spent a lot of time with my husband and I.  I liked her a lot better than the other dr I met with the first time.  I will have another appt with the surgeon and plastic surgeon July 8. That is when I will have most of my questions about the surgery actually answered! I'm also considering having my ovaries removed.  I have looked into FORCE but just not really connected with anyone yet. I guess my mind is made up that having the prophylactic mastect is the right thing to do. i think I'm just really worried about things such as...how they will look and feel, will sex be the same, will my hubby still find me attractive, should I wait til my kids are older, will the rest of my body look fat before the final result...?  I know these things aren't worth the risk of getting cancer for, so I sort of feel like I'm being too concerned with body image! I want to be around to see my children grow up! I don't want to go through the chemo and surgeries that my mom did. Thanks all for listening to my fears! You are all such good people.  Heather