Getting Dbl Mastectomy - need info of experiences on surgery and after

3 of my sisters had double mastectomies.  I initially had a single, but later had the second breast removed due to risk.

My younger sister chose, like you, to do chemo, tamoxifen and surgery--no radiation.  I don't like to be the bearer of bad news but she then had a local recurrence 5 years later.  She then had additional surgery and radiation and has been on femara for many years now.  So far, so good.

My older sister just had a preventive bilateral because she was the only sister who had not had breast cancer.  She did ok, but says full recovery to take 4-6 weeks (depending on your age and health).  She was feeling great right after surgery and ate a milkshake.  That set her back...Lol.  She had to then take many meds to get nausea under control.  Go slow with eating after surgery!

I was the first sister to have breast cancer and was Stage 3.  I had a long remission of 18 years, but am now Stage 4, back in chemo for liver mets.

Good luck with your surgery!!!  I know you are making the right choice for you, but be very vigilant without the radiation after and still examine that chest wall and excision line regularly.  Cancer is so darned sneaky!

Dear Sandy,

I had a double mastectomy with DIEP reconstruction June 25, 2013.  To get ready I read lots of websites and books, I asked questions on this csn discussion board, went to a breast cancer survivor group and asked questions there, and talked to four friends that had gone through breast cancer (2 had reconstruction, 2 did not). I have a fantastic oncologist and plastic surgeon.  They both answered all my questions and encouraged me to talk to others. I felt it was a very tough decision. 

I have really needed this recovery time, I am just now at week 4.  I am still on the 5 lb weight limit for lifting.  My family and friends have been great about helping out and letting me heal. 

coco2008 said:

Did you or your sister have

Did you or your sister have lymph node involvement when you were first diagnosed?  My lymph nodes were clear.  I had one dcis on the left and 1 stage 1 invasive with clear nodes on the right.  I had to have chemo when my OncoType result came back at 32.

Since I have been on chemo I have been reading more about radiation, planning for the next step.  The more I read about heart and lung damage the more concerned I became.  I want to reduce my chances of recurring CA, but at the same time damage to my heart and more damage to my lungs is also a serious concern.  I feel I'm between a serious rock and a hard place.

I do know there is still a chance the CA will come back.  It is a fiendish enemy, and I will not miss appts with onco, surgeon, or gyn to make sure I stay on top of it.

This whole experience has been like walking a tight rope without a net.

I appreciate your help and input.  You have been in my prayers for the last few months and I will continue to pray for you and your sisters.  And I won't let anyone sneak me a milkshake after surgery.

God bless,

Sandy

My sister was Stage 1, clear nodes.  The chemo was elective for her but she did it and, for some reason, did not do radiation. 

My oldest sister had a very tiny Stage 1, clear nodes and had bilateral and hysterectomy/oophectomy.  She has been cancer free for 20 years.

I was Stage 3 with large tumor and 4 nodes.  That was in 1987 and tumor testing was limited.  I just knew my tumor was ER, PR +.  There was not even her2 testing back then. 

I, of course, had the works: mastectomy (tumor too large for lumpectomy), chemo, radiation, years of tamoxifen.  I had deeper than usual radiation because of the tumor's proximity to my chest wall.  My lung (left) did fine.  20 years later I had a small heart attack (with no cardiac risk factors) that my cardiologist thinks was more related to undiagnosed mets at the time (hypercoagulation from mets caused small clot to travel to a small heart artery).  He may be right because I required no stents or bypass and the rest of my heart is very healthy.  Of course, I am now on a statin, beta blocker and ace inhibitor--the post heart attack cocktail.

I will never know if my heart attack was related to my previous treatments, but they can all take a toll!

Do not let my experience (or my sister's) change your thoughtful course or scare you.  Radiation will reduce your chance of a recurrence, but we all must weigh the risk/benefit ratio.

I feel that I have actually been so blessed.  My daughter was just 4 when I was diagnosed and I prayed every day to see her to 8 or 12 or anything older.  She is now 31 and engaged.  I am in a battle, and may not win the war, but I will fight as long as I can!

Prayers for you and big hugs!

coco2008 said:

Thanks.  Drain care had me a

Thanks.  Drain care had me a bit concerned.  I seems at this point I will be going home with octopus legs hanging off me.

Thanks for the info on the stages you and your sisters experienced.  I am going to stick with my decision, but will be more diligent in watching for signs of new problems after your warning of things that could come up.

How is your sister that just had her surgery doing?  I'm still praying for her and for you also.

God bless,

Sandy

Wishing you good luck!