Prophalactic double mastectomy: what my wife and I can expect

MLScott · July 2017

My wife is about two months from a prophalactic double mastectomy. Her decision was easy. She tested for PALB2 after genetic testing that was prompted by her sister's breast cancer diagnosis. Having a small niece to take care of makes it feel like a required step (so she's here and healthy in case her sister has a relapse). But I have no idea what to expect for her and for myself and want to try to prepare us emotionally.

Would really appreciate stories from those that chose for prophalactic (i.e. preventative, pre cancerous) mastectomy. What do you wish you knew before? How did you feel after? Did counseling help if you did that and where did you find someone? And however far out you are post-surgery, how do you feel today?

Thank you for sharing.

Moderators · July 2017

Hi MlScott,

You are very welcome here to the BCO community.

You have put some really good questions out there for others to answer and we're looking forward to hearing from members their experiences.

Sending you and your wife good wishes

The Moderators.

Zillsnot4me · July 2017

I had a bmx. One sidewas cancer, the other proactive. That was four years ago. I decided to go flat. Clothes fit differently and my chest is numb. I'm still not interested in more surgeries but miss the sensation and wish my belly didn't look so big.

I would recommend she take pix of her breasts. There are a lot of choices to make. I would also make an appt with a plastic surgeon to assist.

The social worker at the hospital can give you lots of resources for counseling and support groups. Also read the surgery thread and what to expect so you can have on hand the things that make it better and easier.

Good luck.

MinusTwo · July 2017

You didn't mention her age or her general health. That does make something of a difference to recovery. Yes, by all means - see a breast surgeon AND a plastic surgeon before doing anything. Maybe see two of each. Even if she decides to stay flat, a plastic surgeon will have some good recommendations.

If they will do serial node biopsies, do some research about lymphadema. Most docs don't know much but there are some good theads on BCO.

I had expanders and exchanged to silicon anatomical implants 6 months later. I'm happy with the results 6 years down the road, though I miss the sensations. I hated the TEs (expanders) but they were worth it in the long run.

farmerlucy · July 2017

I did it after pre-cancer cells were found and due to a scary family history. I was tired of the screening. Never did I second guess the surgery. My husband wasn't on board, nor was my daughter with regard to my desire not to have reconstruction. In the end I did the recon which made the recovery much harder. Also I was one of the unlucky ones who was upgraded after the surgery pathology was reviewed. My PS was excellent in terms of preop instructions and pain management. I had a dissolving pain ball around my neck for five days, and soon after that I was on Tylenol only.

I joined the surgery sisters here at BCO for the month I was having surgery. That really prepared me. In the end the thought of surgery was much worse than the actuality of it.

The new boobs are fine. I did fall into a type of PTSD after the diagnosis. Watch for that.

I had a whole dressing station set up in our bathroom. I had to have help twice a day for about ten days. My daughter was a nursing student then so that was great. I guess since I decided to have my breasts removed I never missed them. I thought the recon looked fine for my first peek. No trauma there.

My PCP helped me immensely with meds for anxiety and an antidepressant. I met weekly with a volunteer from my church, who was a social worker in real life. Having someone you can be totally open with is so cathartic.

Best wishes. She will be fine.

farmerlucy · July 2017

Also my DH and I made a plaster bust of my bust before surgery as a way to say goodbye. It also helped judge the fills. Then I tossed it after I felt strong enough. Didn't want the kids to find that if they someday have to clean out the house.

I did not have any nodes taken, but instead I had to have a sentinel node biopsy three weeks post surgery. Apparently Angelina Jolie also had Prophylactic Dye injection pre surgery in case something sinister was found. That way the node would still be colored, and easily spotted if the surgeon had to go back for the node. That is a much better option than an axillary node biopsy and the future risk of lymphedema.

farmerlucy · July 2017

http://pinklotusbreastcenter.com/breast-cancer-101...

Very interesting reading here

MinusTwo · July 2017

Oh - I did forget the 'dressing' station. I live alone but my grown son came for a week. I stayed in the hospital for two nights. After that, he stripped the drains & made sure I took my meds. I did not have him help with the bandages but did OK on my own. I was allowed to shower fairly soon as long as I kept my bandages dry. He did help wrap "Glad Press N Seal" around the bandages while I tried to cover everything with a towel & everything stayed dry. I learned that trick from friends with various broken bones over the years. I hung the drains from a rope around my neck with clothespins.

You'll need to get pillows to prop up & sleep on your back while healing. That was hard since I'm a side sleeper. Some women sleep in a recliner for the first weeks.

MLScott · July 2017

Thank you to all that replied above. To respond to a few of the questions and things mentioned...

She is early 40s and in good health. She will be having skin/nipple sparing mastectomy + spacers and then later, implants.

We have seen the surgeon and the plastic surgeon. They gave good us good info but the closer the surgery gets the more I worry that we're not prepared mentally/emotionally (if someone actually can prepare). I guess I'm wondering if/how one can prepare for having breasts that are similar but have no sensation. I obviously can't directly relate as a man but at the same time I can understand that that would likely be troubling. Maybe the answer is, it is what it is and all you can do is remember the bigger point here, which is long-term health. I'll see what I can find locally in terms of counseling pre/post. By what you say, it sounds like I may start with the hospital and go from there.

By the way - thanks for the tip on creating a dressing station. That makes a ton of sense and sounds like it will really help. And thanks, FarmerLucy for the link. Will check in out.

MTwoman · July 2017

MLScott,

" I guess I'm wondering if/how one can prepare for having breasts that are similar but have no sensation" - I actually have sensation, just not in my reconstructed nipple. It took time to come back (and yes, the numbness was wicked weird), but slowly I regained the sensation both under my arm and on the skin across my entire foob. So they may not "have no sensation" (although they'll most likely start that way). Good luck!

exbrnxgrl · July 2017

I don't know if you can "prepare" for the no sensation issue, but you need to be aware of it. Surface skin sensation returns for many women, but with no underlying breast tissue, deeper sensation is usually lost, i.e. Sexual sensation. I think this might be difficult to imagine in advance and I have read that there are some women who say they regained full sensation (not sure how since there is no breast tissue), but just be aware of this

MinusTwo · July 2017

ML - There is a thread that can be very helpful if you are researching in advance. Breast Implant Sizing 101 - link below. If you read the entire header first, you can enter your wife's specs and ask Whippetmom what she thinks might be a good match for size and other PS or Implant questions.

https://community.breastcancer.org/forum/44/topics...

BTW - this is the same Whippetmom that I recommended to ask about plastic surgeons in SF. And if you're going to get a second opinion, you can always consider Stanford.

leftduetostupidmods · July 2017

I think the biggest thing for me was the loss of sensation. I am talking from the point of view of a sex drive. Some women have the breasts as the most important erogenous zone, and unfortunately it seems I'm one of them. Even if with the skin-sparing, I slowly regained sensation in most of the breast area - except the reconstructed nipple area - the missing nipple and nipple nerve just cut everything down for me. So that would be a point to consider, if your wife is also one of the "breast erogenous zone" women.

Herculesmulligan · July 2017

I had a very similar surgery except I had lymph node dissection as well. I would say expect a significant change in younr lifestyle during recovery. I slept in a recliner for ten days or so. Do you have one that might work? Having food ready was a big help for a couple weeks postop. Encourage your wife to take her pain meds. Expect the first couple showers with the drains to be kind of an awkward ordeal.

I'm five and a half months from my BMX now, and almost two months from my exchange. I still get some axillary pain and stiffness on the side that had the more extensive lymph node dissection, but it sounds like your wife isn't going to have to worry about that. I have numbness across my breasts and under my right arm, but I can convince myself that it's getting better. I have silicone anatomical implants, and I'm not crazy about them. They like to ride in my armpits which feels weird, and they're very ripply when I raise my arms. But when I'm dressed they look good and they sure beat the expanders which I hated with a passion.

My hat is off to your wife and you for doing this prophylactically. I wish you the best

Prophalactic double mastectomy: what my wife and I can expect

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