kiwik Posted July 25, 2013 Share Posted July 25, 2013 Has anyone had a double masectomy? What was the recovery like? I just got my genetic testing back and I have inherited the breast cancer faulty gene from my mother. She got breast cancer when she was 5 years older than I am but her kids were grown. Mine will be 11"and 9 in 5 years. I will be offered ovary removal, total hysterectomy and probably a pre-emptive double masectomy. The cost of the operations would be covered but the recovery could be tricky. Quote Link to comment Share on other sites More sharing options...
bettyandbob Posted July 25, 2013 Share Posted July 25, 2013 :grouphug: I don't know anything about this, but I hope it works out for you. Quote Link to comment Share on other sites More sharing options...
BlessedMom Posted July 25, 2013 Share Posted July 25, 2013 :grouphug: :grouphug: I do not know much about it, but you will be in my thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
Catwoman Posted July 25, 2013 Share Posted July 25, 2013 :grouphug: Just giving your thread a bump in the hope that someone will have some specific information for you. I'm so sorry you inherited the gene, but I think it was very smart and courageous of you to get tested, and I am glad to hear that you are preparing yourself to take pre-emptive action. I wish you didn't have to deal with this. I can't even begin to imagine how scared you must be. :( Quote Link to comment Share on other sites More sharing options...
Slartibartfast Posted July 25, 2013 Share Posted July 25, 2013 :grouphug: I will keep you in my prayers. Quote Link to comment Share on other sites More sharing options...
texasmama Posted July 25, 2013 Share Posted July 25, 2013 (((hugs))) Quote Link to comment Share on other sites More sharing options...
Tammyla Posted July 25, 2013 Share Posted July 25, 2013 :grouphug: I can only offer hugs and a bump in hopes of the thread attracting someone with insight. Quote Link to comment Share on other sites More sharing options...
RebeccaS Posted July 25, 2013 Share Posted July 25, 2013 :grouphug: :grouphug: I'm sorry that I do not have personal experience with a double mastectomy to share with you. However, I am scheduled the day after Labor Day for a total hysterectomy. My genetic testing came back a few months ago positive for the BRCA1 mutation. I just lost my second aunt to ovarian cancer about three weeks ago. She was 59. Her sister was just 46 when she passed. So, while I cannot give you any practical information about recovery, I wanted to give you a hug because I'm in the same boat. :grouphug: My OB is strongly encouraging me to make an appointment with an oncologist to discuss options re: the breast cancer risk. That will be on my agenda after I recover from the hysterectomy. Quote Link to comment Share on other sites More sharing options...
zimom Posted July 25, 2013 Share Posted July 25, 2013 Hugs. I'm waiting for my testing to return now. I was told I should have it in about two weeks? My mom was dx at 39, I'm 45. Quote Link to comment Share on other sites More sharing options...
kiwik Posted July 25, 2013 Author Share Posted July 25, 2013 Thought I couldn't be the only one - keep in touch. Quote Link to comment Share on other sites More sharing options...
Guest Posted July 25, 2013 Share Posted July 25, 2013 (((hugs))) First of all. I'm so sorry. I just recently consulted with a genetic counselor about this because my mom has breast cancer. (She does not have the mutation, it turns out.) She was saying that in her opinion, the ovaries are the scarier issue because detection is much harder. At least there are things you can do to discover breast cancer earlier. If it were me, I would probably focus on the ovaries first (assuming I wasn't having more kids) and then consider going forward with the prophylactic mastectomy afterwards. The counselor also said that she was annoyed by the "87%" risk rate that has been flashing everywhere since Jolie's surgery. She believes this is a high rate due to the way the study was done; she feels the "true risk" is more like 40%-50% if you have inherited the mutation. (Still nothing to sneeze at, of course.) My SIL did have a double mastectomy. The recovery from the mastectomy was not terribly severe, but she had reconstruction done simultaneously and that was problematic. The spacers caused infection and she had to have them removed. So, she went without breasts until after all her treatment. At that point, they were only able to give her small implants. She is not happy with the way they turned out and is considering re-reconstruction at some future point. I don't say any of that to be scary. Just trying to be straight-forward about what I have seen. My mother did not have a double mastectomy. She had a wide resectioning (a large lumpectomy) on the affected side and a reduction of the other side. In this way, she avoided implants. They were able to use her fatty tissue to sculpt a breast in the area that was removed. If you are lean, obviously, this is not an option. (((hugs))) again. I am terribly sorry you have to consider these options. Quote Link to comment Share on other sites More sharing options...
kiwik Posted July 26, 2013 Author Share Posted July 26, 2013 I will do the ovaries first - I am nearly 45 and single so no more kids and it is only a two week recovery (my mother just had it done). I will automatically get annual mammograms (or mri's if required). the mastectomy will be offered but I don't think the decision need be made at once. I will be referred to two lots of specialists and should see them in a month or two. I'm pretty sure the geneticist said the gene mutation I have gives a 70% chance of breast cancer over a lifetime. Getting it at 94 is different than getting it at 54 though. Quote Link to comment Share on other sites More sharing options...
gingersmom Posted July 26, 2013 Share Posted July 26, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
livetoread Posted July 26, 2013 Share Posted July 26, 2013 My mother had a double mastectomy earlier this year with no reconstruction. She also had a total knee replacement done, and she said the knee was much worse. Her recovery from the mastectomy wasn't too bad. Quote Link to comment Share on other sites More sharing options...
kiwik Posted July 26, 2013 Author Share Posted July 26, 2013 Nice to know. Thanks for your help and hugs ladies. Will update in a couple of months. Quote Link to comment Share on other sites More sharing options...
Joanne Posted July 26, 2013 Share Posted July 26, 2013 {{{all those at risk and anxious and waiting and scheduling surgery}}} Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted July 26, 2013 Share Posted July 26, 2013 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Penguin Posted July 26, 2013 Share Posted July 26, 2013 I had one in 2006 after a breast cancer diagnosis. No regrets. Please feel free to PM me - I am happy to help if I can. Quote Link to comment Share on other sites More sharing options...
mom2att Posted July 26, 2013 Share Posted July 26, 2013 My sisters both had this surgery--double mastectomy with reconstruction and ovary removal--when they were found to have the BRAC gene. My aunt died in her 50's, my mom was successful against breast cancer in her 50's but now fights ovarian cancer in her 70's. So my sisters had the surgery as soon as they found out they had the gene, in their late 40's/early 50's, which was just in the last year and a half. The recovery was painful, but they did not have complications, and the hardest part for my oldest sister was not being able to run for 6 weeks after the surgery. She's nuts like that! Now my not-yet-30-year-old niece has found that she has the same mutated gene. A much more difficult burden to carry at that age, I believe. She is going to have the mastectomy now, but hold on to her ovaries for a little longer because she would like more children. Hugs to all of you going through this. It's great to have access to genetic testing, but frightening all the same when you get a postive. Quote Link to comment Share on other sites More sharing options...
Tiberia Posted July 26, 2013 Share Posted July 26, 2013 I'm sorry you're dealing with this. Whatever you do, I wish you a speedy recovery! You can get through it! I had a single mastectomy a few years ago after cancer diagnosis. The recovery wasn't that bad. I had a drain tube for a few days, which was a pain, but not impossible. I think it took about 8 weeks before I could start swimming again. I walked around the block the 2nd day, and that was too much, but I was walking after the first week with no problem (exercise walking, that is). I remember doing mild stretching/movement exercises starting the first week just to maintain range of motion in arms and shoulders. Your body will let you know how much is too much. We took one week off of homeschooling for my recovery, but didn't miss any school after that. I did not do any reconstruction. That's a whole new ball game that I didn't want to deal with. I'm happy with my prosthetic breast. I have bras with prosthesis pockets, so when I put my bra on, I put my boob on. Not a big deal with me (everyone reacts differently). I got a hysterectomy in November of last year. The first few days of recovery were miserable (mostly from pain med sickness), but after that, it was great! My recovery from that was really fast (six weeks or so for total recovery). I feel so much better after this surgery! (Make sure you have a good/experienced surgeon for any surgeries you get done. It makes a huge difference!) I wish you the best with all this. Take care, and be kind to yourself in this stressful time. Jo Quote Link to comment Share on other sites More sharing options...
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