The prophylactic masectomy club

Not my personal situation but I'm sure others will come along with more relevant experience. I do find that deep breathing usually helps when thinking about anxiety provoking events! Hoping your risk reducing procedure and recovery is totally unremarkable. Will you be getting physical therapy to regain range of motion?

You might want to request pre-op limb measurements for later comparison in case any swelling develops. Although rare when no nodes are removed, any trauma to an area can set the stage for lymphedema.

Another place to consider posting your second question would be in the forum titled Relationships, etc way down the list here. My only thought is, should the boyfriend ever become a husband, the mother issue becomes even greater. Perhaps giving her a chance by allowing a visit as she supports him might surprise you, in a good way...

My primary reason for responding to you is to ask whether any of those female relatives had recent genetic counseling. If their negative results were more than a couple years ago, someone may need to get an update. There has been an explosion in the field of mutation testing, with much more to consider than just BRCA 1/2.

I just had double mastectomy with reconstruction but with reduction also. I was high risk. My aunt & little sister has breast cancer. My surgery was 4 weeks ago I am still on medical leave. The first week home was the hardest for me. I was so sore and swollen. They had to take my lymph node also. I still even have 1 drain .

As far as visitors it's up to you. I work at the hospital so everyone was coming to see me.... but yes you will need tons of help that's for sure. I still get week and very emotional. I need help all the time. Good luck and take care

well...I'm ready to sign to have a bil mastectomy...was told 6 weeks but that I may only need about 4 weeks off...thoughts

Hi Kelly and Beth-

We want to welcome you both to our community here at BCO. We hope you find the support you need!

Kelly, we hope your recovery continues to go well, and Beth, we wish you much luck on your upcoming surgery!

The Mods

Hi New

Good wishes. I'm your age a few years older. I had prophylactic ooph at 41 before there was any genetic testing for BRCA. My case it was very difficult because I am not nor never have been well. I was one of first people in US tested for BRCA 1. Family sounds just like yours. So many of my beloved people dead from either BC or ovarian. I knew it couldn't be random and it wasn't . I don't have this gene that they all carried and I'm thankful for that but go figure I'm right around the corner from bc anyway .

All I can say it that you are doing what you must do. When I need to do pbmx I

Think I'm going to flat route because the surgery alone will kill me. You sound healthy enough to hack it. There are forums and pages here specifically about these recon or ot questions. I totally hear your anguish though. I would and do feel the same . Keep us posted please . Good thoughts. I know you are doing the shocking and hard thing but the " right" thing

My breast surgeon wants to do a sentinal node biopsy on each side durong my prophylactic bilateral mast. I do not have bc (at least to my knowledge -had mammo in July and it was clear. Is the node removal common with prophyl surgery? It just sèems like yet another stresser. But then again she is my sister's surgeon and did the bilateral mast when her cancer was gound 3 months ago. Has anyone else had this procedure done during their mast?

I had a preventative bilateral mastectomy July 10, 2015. I chose no reconstruction for many reasons and haven't regretted having the mastectomy or being flat for one minute. I wear clothing to disguise I'm flat, or bralettes with molded cups and fiberfill or silicone prosthetics with mastectomy bras, and no one can tell the wiser! Even without reconstruction I can wear lots of tops, even some lower cut tops. Nothing cleavage showing, but I'm married and not wanting to dress like that at work or out anyhow. I just look thin if I go flat.

I tested at 35 and camecback BRCA2 positive and it's been a major relief that I will no longer wait for BC to happen or worry about when a surveillance test would come back positive for BC. I had a scare last fall with increased blood flow in an MRI that lead to a core needle biopsy that came back benign but after 4 years of tests and being 39 it was time for the girls to go. I feel much more at ease. My surgery was 2.5 hours. I stayed overnight for pain and nausea management. I went home the next day and used Rx painkiller 3 days followed by Advil with surgeon's permission the 4th day. I needed my mother or husband to help me with food prep and changing clothes and bandage changing the first 3 days. Because this was preventative no nodes were tested but pathology was done. No node testing and no implants meant I healed quickly with less fluid and my drains were out in 5 days. I went back to a desk job but hour-long commute both ways after 4 weeks. I could even lift my 35 lb son at 4 weeks! I felt completely healed at 6 weeks.

You shouldn't need nodes taken from the armpit area unless cancer is suspected. I think Jolie's test was to ensure her niplples and areolas were cancer free in order to preserve them for a nipple sparing mastectomy. You can also chose a skin sparing mastectomy but remove the nipples and areolas, then have those reconstructed too. If you keep the nipples, know that they won't be sensitive, just for looks.

To you and to newme, If you do this preventatively, take your time to research all your options. Ask the breast surgeon lots of questions. Meet with 1or 2 plastic surgeons about reconstruction but remember they'll show you pics of the best work not the average. They also do the type of reconstruction they know. Seek out women who've chosen that option so you have a realistic view of the outcome and what setbacks you might encounter before you have a result you are content with. If you look at being flat check out breastfree.org, which is maintained by a woman who goes by the username "Erica" on this board. Read the boards about "Living without reconstruction" to see what people say and the boards about reconstruction. Whatever you decide you can change your mind later if you want to. And do whatever YOU want. It's your body. If you're not comfortable with a doctor, seek a different one if you can. Tell the operating room nurses you only want to see your boyfriend in recovery and they will only let him in. His mother won't be able to just walk in. Usually you can only have one person anyhow. Best of luck to you ;-)

Hi New_me:

I would recommend that you ask your surgeon for the particular reasons that he is recommending sentinel node biopsy in your case (e.g., possible findings from imaging? family history? other?).

As you may know, intact lymph channels are needed for a successful sentinel node biopsy (SNB), and mastectomy will disrupt the lymph channels. Therefore, if SNB was not performed at the time of mastectomy, it may not be possible thereafter. You should confirm this point with your surgeon.

If SNB was not done at the time of mastectomy, I would inquire how axillary lymph nodes would be assessed if invasive disease were found in the post-surgical pathology, and how the morbidity of that procedure compares with that of SNB in terms of lymphedema risk.

The below text is copied from the National Comprehensive Cancer Center (NCCN) guidelines for Breast Cancer Risk Reduction (version 2.2015) (emphasis added by me):

"Women considering RRM [Risk-Reducing Mastectomy] should first have appropriate multidisciplinary consultations and a clinical breast examination and bilateral mammogram if not performed within the past 6 months. If results are normal, women who choose RRM may undergo the procedure with or without immediate breast reconstruction. Bilateral mastectomy performed for risk reduction should involve removal of all breast tissue (ie, a total mastectomy). Axillary node assessment has limited utility at the time of RRM. Women undergoing RRM do not require an axillary lymph node dissection unless breast cancer is identified on pathologic evaluation of the mastectomy specimen.

Some patients may be at risk for an occult primary tumor, such as patients with abnormal imaging findings on either mammogram or breast MRI who do not undergo biopsy, and patients with familial history who have not had a breast MRI prior to surgery. In such patients, a sentinel lymph node biopsy may be performed to stage the axilla for an occult cancer during the RRM, and a secondary axillary lymph node dissection could be avoided if an occult invasive cancer is discovered. . ."

Again, it appears that at least in some cases of prophylactic mastectomy, SNB may be appropriate, so it is best to inquire with your surgeon. If you are still uncomfortable about it, you can consider obtaining a second opinion.

BarredOwl

are you really comfortable being flat? I have been inching my way to that decision. The idea of not needing a bra is so refreshing. I was stunned by my breast surgeon's reaction when i told her i was considering no recon.. She strongly encouraged me to at least meet with PS. I definitely DO NOT WANT IMPLANTS. And not sure about the other options. I will meet with PS but i am getting a gut feeling that flat is best. I have been reading the information on breastfree. Your comments are so welcome. I am 60 and my daughter is pregnant with my first grandchild... she does not want me to have reconstruction. Neither of us likes anything not natural. I am brca2. She will test after baby. She is 30. She has already said if she is brca2 she will do bilateral mast without recon.

So cruel that we women have to make such choices in order to live. And then there is my mom who is brca2, 89 yrs old and never had bc she beat the odds. 2 sistersbof mine have had bc.

Best of luck to you, pink sister. I had bilateral mastectomy with immediate reconstruction and nipple sparingSept. 18, 2015. It's no walk in the park for sure. The first 3 days were the worse for me but I am doing much better now. I actually walked 3 miles, drain tubes still intact, for the Susan G. Komen race for the cure. Wore out now!

thanks