Forum Discussion
Profilatic mascetomy
Just wondering how many ladies have opted to have a double mastectomy with cancer only in one breast to try and eliminate the possibility of it coming back. Also was your choice based on a genetic factor or purely prevention and peace of mind?? Thanks kel xxxxxx
80 Replies
- Hi Coldcapper, this is a quick one but happy to respond later. I've had the identical op as you have had but have not done nipples yet.To busy!! My last of for exchange was July this yr . My ps wanted me to wait 6 wks for gentle exercises and then at twelve wks full gym work with no restrictions.I always listen to my body though , and even if I was able to do something b4, if there is any hint of the wrong pain I stop . Hope that helps. Kell xx
- Hi Coldcapper, this is a quick one but happy to respond later. I've had the identical op as you have had but have not done nipples yet.To busy!! My last of for exchange was July this yr . My ps wanted me to wait 6 wks for gentle exercises and then at twelve wks full gym work with no restrictions.I always listen to my body though , and even if I was able to do something b4, if there is any hint of the wrong pain I stop . Hope that helps. Kell xx
- Hi ladies Having had the bi lateral mastectomy done limph nodes left side removed inplants done recovery complete on tamoxofin. I need to exercise but my surgeon says no weights even 1-2 kilo no exercise that involves the pectoral muscles - forever after. He said just do cardio. So curious to know what exercise any of you gorgeous ladies do for your upper body - ?? I see the fabulous rowers in their pink shirts in my local seaside area rowing like mad - looks strenuous pec type of exercise so I was shocked to learn it could move my inplants out of position. Love some tips - power to you all - COLDCAPPER
- I have recently undergone a Bilateral Mastectomy (28 May 2013) and reconstruction by expanders. I had found two lumps in one breast and then diagnosed with DCIS in the other after a mammogram so my decision was they both need to go. Like you I have been blessed that I will not undergo Chemo or Radiation but will take the course of Tamoxifen for the next 5 years for which I will being starting Monday. My question to you or anyone is do you have any tips on how you deal emotionally with the ongoing daily pain. Sometime i wonder if it was worth it all as I am consistently in pain cant see the light at the end of the tunnel just yet.
Hi Ladies - I haven't been on this site for a little while so read with interests the posts in this thread. I too live in South Australia in a rural region.
My mother was diagnosed with BC at 36 and then again at 48. I was aged 12 and 24 respectively. This was 25 years ago and she is now nearly 73 and totally cancer free.
What I saw her go through when I was 24 embedded in my psyche that "if I was ever faced with the decision, I would get rid of them both".As Mum was young at first diagnosis, we three girls had to have mammograms from aged 30.
In March 2010 (I was 45) I had a mammogram which found DCIS in my LB. I immediately informed my specialist that I would like to "get rid of them both". It was a decision that I did not waver from, had a lumpectomy immediately to "give me time to make my decision" and then had the bilateral mastectomy in July 2010 with immediate recon with expanders. I did have complications with infections however in Feb 2011 had the exchange surgery and to this day the weight off my shoulders has been immense (figuratively and literally LOL).
I had genetic testing at the time and did NOT have a faulty gene - this did not change my attitude about my decision. My Mum was then tested and she DOES have the BRCA 2 gene. SO my 2 sisters then were tested - 1 does have gene the other does not. The sister with the gene has had prophylactic mastectomy last year and the sister that does not have the gene has just lost 30kg so she is able to have the same surgery. The entire experience has been life changing for us all.
Sorry this post is so long, but wanted to paint the picture both as a daughter of a mother with BC, as a survivor myself and also as a mother myself. I did not want my daughter & son to experience the trauma that I saw my mother go through nor have them live each day with not knowing if it was going to come back or myself be on a constant roller coaster of wondering. For the last 24 years I had looked at them and asked "I wonder when you are going to get me".I certainly will not say that I don't miss my boobs, but the relief in knowing that I have done what I can to eliminate my risk is overwhelming.
At the end of the day we can only make decisions which are right for us and it really is something that until you are in it, you cannot definitively know how you will feel but you make the decisions based the best information and what is right for you.
Good luck
Leanne :-)
Feel free to add me as a contact to chat privately or read my story also - I am also a BCNA Community Liaison.- Wow Katie, well done you. Glad to hear you sounding so positive. I am booked to have a prophylactic mastectomy following my previous lumpectomy(3 years ago) and eventual mastectomy(from a recurrence 2 years ago) on May 1st. I am having a double reconstruction from an abdominal flap at the same time. I feel really positive about it as it has been 2 years in the planning. I am not very big and as I can't have implants due to radiation I will have only small breasts. I will be more than happy with them. I am glad I waited as my surgeon at the time wanted to put implants in and I think at the time I would have said ok. Now that I have had time to do my research I realize that they are not the best option for me because of my radiation. It's funny how you accept your new shape. I was shocked by how only having one breast did not totally freak me out. I just accepted it. If I did not decide to have my other one off I may not have bothered with the reconstruction. My kids and husband were also accepting which made life easier as well. I have had nothing but support about my upcoming surgery. Good luck with whatever decision you make. The only right one is what is right for you. I hope your healing continues well. Big hugs to you Paula
HI Belinda, I saw your post and just wanted to say hi, and welcome. Also to let you know that there is a Triple Negative group in the network if you want to connect in with others with a similar diagnosis. You can find it here: http://www.bcna.org.au/group/16948.
- Hi all, My name is Belinda I am a 32yo mum of 2 boys I was diagnosed with triple negative breast cancer in late October 2012, I have have 4 cycles of ac and have 2 cycles of taxol left out of the 12 so nearly fin chemo yay:). I had a lumpectomy and sentinel node biopsy, nodes were clear, than had a further re excision as the margins were too close. I have had genetic testing but do not carry the gene, and have been booked in for radiation to follow chemo but am still considering bilateral mastectomy and reconstruction instead my oncologist is just recommending the radiation but I am not totally convinced does any one have any advise ??
- Hi all, My name is Belinda I am a 32yo mum of 2 boys I was diagnosed with triple negative breast cancer in late October 2012, I have have 4 cycles of ac and have 2 cycles of taxol left out of the 12 so nearly fin chemo yay:). I had a lumpectomy and sentinel node biopsy, nodes were clear, than had a further re excision as the margins were too close. I have had genetic testing but do not carry the gene, and have been booked in for radiation to follow chemo but am still considering bilateral mastectomy and reconstruction instead my oncologist is just recommending the radiation but I am not totally convinced does any one have any advise ??
Hi Little Red,
The mastectomy recovery was the worst part of the whole process. I was only in hospital for 3 nights but my drains were in for 3 weeks which is not the norm. I had a local anasthesetic pump to the site as well as morphine on the push of a button but the morphine made me feel worse than the pain so I went off that. I could move my arms and had exercises to do every day from then physio, but you are not supposed to raise them over you shoulders until the drains are out. I had help to bath and wash my hair but I wasn't allowed to shower with the drains in. Once they were out I started to do the extra exercises and was pretty much back to normal in a couple of weeks. I had the second op, expanders replaced with implants, nipple reconstruction and my ovaries removed, about 8 months later (had to have chemo in between). This was nothing like the first op, I was in hospital for 3 nights again but the pain was controlled by panadol and recovery time was a lot quicker. I was back to normal after the drains were removed (2 weeks this time).
Most people don't have the drains in anywhere near as long as me and my surgeons said there was not really any explanation for it just that every person's body heals differently. So it is probably safe to say that your recovery time will be much quicker than mine.
I had the tattooing done about 2 months ago (about 3 months after 2nd op). This was relatively pain and hassle free.
My plastic surgeon is very happy with the overall results and I must say that the results are much better than I had expected and well worth all the hassle. It is now about 1 year and 2 weeks since my bilateral mastectomy and first stage reconstruction and I feel very happy with my decision and have never looked back.
I hope this has answered at least some of your questions and happy to answer anymore you may have.
Chal
