Advice one more time

[phurst]

I am a husband who has learned so much while viewing this site for the last 7 months.Thankyou for allowing me here.I have only posted a few times and gotten some great advise through some very difficult times.My wife is what you call triple positive.She dicovered it in her lymph nodes after negative mammograms every year.She had 3 tumors in her left breast.After 12 weeks of Taxol and 13 weeks of herceptin they did an MRI and said they were gone.She then did 4 FEC treatments which came every 3 weeks(that was the hard part for her).The last one was yesterday Feb.27.They had to stop the Herceptin after the first FEC treatment(you know why) and will start it back in 3 weeks till September.Her surgery will be the end of march followed by radiation.
Sorry to be so long winded but my question is she wants to have both breasts removed but the Dr. wants her to just have just the one.He says since she is not a canidate for reconstuction till after the radation she can decide on the other one then.do any of you have any advice for her on this ?
I have tried to get her to look over your HER2 Support Group Forum but she will not. She says she is not ready and gets to depressed thinking about it.
Thanks in advance for all your help.

[SoCalGal]

It's hard to give advice. The hardest decision I had to make was choosing what to do because it was left up to me to decide. I usually can make quick decisions but I really didn't like ANY of the options.

The only thing I can say is bilateral mastectomies with reconstruction is a tougher surgery with more healing than a simple mastectomy with no reconstruction. It would be good if she could talk to someone who's gone thru this. If she won't talk on line I know that www.Y-ME.org will match you up with someone to speak with over the phone.

Good luck.
Flori

[Cannon]

Hi, I want to let you know that many women do decide to have both breasts removed - I am one of them. My surgeon also tried to discourage me, and I honestly think this is because he is a man, and didn't want to remove a healthy breast. Once I was clear with him that this was my true desire, he said fine. I also was/am not a candidate for reconstruction for a while, and not sure I will want to do that.

My rationale involved the following issues:
1) There was a 1% PER YEAR chance of recurrence in the opposite breast (capping out at about 20%)
2) I had large breasts and would be terribly lopsided with one; did not want to have another surgery later to remove the other
3) I knew I would just worry that much more - I did not want to regret it later
4) While the survival rate may be the same, the recurrence rate is not, and I wanted to reduce my chances of having to go through cancer treatment a second time (well, third if you count my thyroid cancer 2 years prior).

I also requested that my GYN remove my ovaries AT THE SAME TIME as my bilateral - he was willing, but again my breast surgeon was skeptical. It all went beautifully - one anesthesia, one "surgery" to me.

So - it doesn't mean your wife is crazy to want this, and I don't think there's any medical reason for her surgeon to be against it.

Hope this helps you, if not her.

Rebecca

[Kim in DC]

Hello,
I just want to encourage you to make a decision on both the surgeon and plastic surgeons recommendations. Mine worked hand in hand.

Kim

[Bill]

All I can contribute, my friend is that you are in my thoughts and prayers now. If you have been here 7 months, I know you are a great husband. Please try to take care of yourself as well as your wife. Eat as well as you can, exercise, and seek peace of mind through whatever wholesome means you can. Where do you live in NC? just curious. I wish I could help more. I know you want her to visit this site, but sometimes, "less is more", it's a great thing for her that you are here, and she will come here in due time when it is right for her. (You sisters, tune out here. It's just me and Phurst drinking a beer and searing meat on the grill) We men are linear-thinking problem-solvers. We want to solve every problem and try to think of the best logical step to take next, and when the women in our lives don't "listen", it can become frustrating. I wish I could offer advice about the mastectomy issues, but I can't. I have a cousin who elected to have both breast removed (one just to avoid possible cancer in it), so I understand her concerns. Maybe you should seek a second or third opinion. Women tend to be spatial thinkers, trying to think of everything all at once, that's why they are so good at multi-tasking, but in my opinion, that's why they sometimes worry about everything all at once, too. (I might hear about this one). I wish I could be more help. Prayers for you both, Bill

[Barbara2]

I posted a fairly long comment to you, and it was lost because I was not logged in.

I had both removed. No regrets whatsoever.

[phurst]

To all who answered many thanks for the advice and i will pass it along to her.

Bill,thanks for your prayers and kind words.I am sure you look at phurst and think I live near Pinehurst,nope just lots of visits since my chidhood.I live about 2 hours north of Pinehurst and 45 min. north of Raleigh.

again thanks to everyone.Sometimes I feel bad asking for advice when i see so many of you have it so much worse than my wife.

[kimber]

I had both removed and had to wait till done with chemo and Rad's before reconstruction. Absolutely no regrets.

One way to look at it is they both match now!! ha ha. Seriously, I just could not have lived with only having one off and always watching and MRI the other every 6 months. They (surgeon and oncol) recommended both off from the beginning. I had the family history thing going on. Mom, aunt and gramma all had BC. It was kind of a gimme that I would get it.

I am happy and healthy. I wish the same for your wife. God bless!

[ita]

Each person feels differently about their body. My original breast surgeon didn't want to do a mastectomy on me. He wanted to do "breast sparing surgery." Just cut away until the margins were clear. Well, I'm so glad I didn't listen. I ended up with the palpable dcis and a second cancer very close to my chest wall that was never detected. Guess what, my healthy breast already had areas where there were "changes." My thoughts at the time was that since I was lobsided I would have reconstruction on the other breast anyway.

I figured get a set of perky ones instead of just one and the real one will droop with time and age.

That being said, it has not been all roses. I have no sensation there at all. And without getting too personal, that stinks in the bedroom department.

If I had to do it all over again. I would do the same, in a heartbeat. I would have, and did do everything I could think of, including a total hysterectomy at 34 years old, to not put myself and my family through chemo again. I'm not saying that because of that I'm never getting cancer again. God only knows that. All am saying is that for me, it's peace of mind. No second thoughts, no what ifs.

You are a great husband to be here for your wife. Believe me, there are not many like you. It takes time. Just keep doing what you're doing. Empower you and her with information. That's the best way to make a decision.

Gricel
P.S. I am also triple positive.

[harrie]

Hi Phurst!
I had a billateral mastectomy and reconstruction was done at the same time. It was physically challenging, but I am glad that I did it!! My surgical oncologist recommended this option and set me up with an amazing board certified plastic surgeon. It has been maybe 1 yr and 3 months and I am doing absolutely great. By the way, I had had radiation to both breasts previously so it was rather challenging for the plastic surgeon, but he did a fantastic job.
Phurst, if your wife would like to talk to me, you can send me a private message and I would be happy to give her my phone number. Anything we can do to help her along....
Harrie aka Maryanne

[mts]

As time goes by I realize that my decision to have breast conserving surgery was based from clinical/statistical outcomes. Not necessarily personal. Yes, the lumpectomy went fine- I had the radiation and chemo and Herceptin too... but now I have to get a breast MRI every year for life... !!! My cancer was invisible on the mammogram and the ultrasound. I also had a reconstructive lift to the good breast in order to have symmetry. Now the "good" one is numb and the irradiated one is "off limits" --- maybe its mental, but its more like an ear or a toe--- only difference is that i can't paint it or pierce it !!!

I hate to admit it, but I should have had them both removed. I was a staunch supporter of breast conserving surgery when I was going through it. I know that bc changes everything. Many women are happy with keeping one and getting reconstruction on the lost breast.
My irradiated breast hurts during intimacy, and the reconstructed one is numb. Whatever the choice is- the outcome will be something unlike normal. The breasts (or lack thereof) will never be like it was before bc. Period.

I think docs are concerned with emotional well being and want the patient to not rush to double mastectomies... Its such a personal decision. But again, being realistic about the long term results should be the focus of the decision making.

I would print some comments from this forum and leave them somewhere in the house for your wife to peek at. That is what my husband did to me.

Maria

[phurst]

Thank you all so much for taking the time to reply.I have printed them all and will give them to my wife to look over.