Forum Discussion
kel016
14 years agoMember
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
- Di_BCNAMember
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.
- BelstarrMemberHi 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 ??
- BelstarrMemberHi 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 ??
- ChalMember
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
- Little_RedMember
Hi Chal,
I am on a waiting list for the exact same thing, bilateral - expanders - implants - nipple reconstruction and tattoos..I was told this was the best thing to eliminate it coming back as much as possible but that doesnt make me feel that much better about the whole process.
Can you tell me what the mastectomy recovery was like? how long till you could move your arms? and was the pain manageable? Do you have any tips for recovery? they say because i will have expanders and drains in they will keep me in hospital at least till the drains come out..how long were you in for? Did you need help showering and stuff for a few day?
sorry lots of questions..
L
- melanieg51MemberThank you Leanne, I guess I'm still reeling from having to make so many big decisions and confront so many issues in a short period of time. My mum is a 4/5yr survivor of BC but knowing that makes me feel more confident in being much more aggressive with my treatment. Hearing your experiences is great comfort because your motivations to having a masectomy are essentially the same as mine, I don't want the the ticking timebomb to hang over me and I wanna know I did everything I could to make sure this doesn't co e back. Thank you.
- LeanneIMember
Hi Melanie - i have not actually posted in this thread but have similar stories to all the other ladies (have a look at my blog).
I had DCIS in 2010 at 45 but due to family history had always "said" that if I was in the position I would just "get rid of them". My mum had bc at 36 then again at 48 and is still with us at 72!
I had spent the past 24 yrs (since Mum's last bc) looking at my boobs most days and saying "I wonder when you b*** will get me". I was not a great lover of my boobs - saw them more as timebombs.
So when I was diagnosed that is the decision I made immediately - many thought I had made a very quick decision but as a very close friend said - you made that decision 24 years ago!!!
I had a lumpectomy initially to give me time to plan my next course of action. I could have had radiotherapy and then been monitored every 6 months for the rest of my life. That was in April 2010. I chose to have the bilateral mastectomy in July 2010 when my daughter could drive and husband was a little quieter on the farm. Pathology on removed breasts found more DCIS in my left boob which had not shown up in any scans or tests. I had some complications post surgery but have never regretted my decision even once.
I do look at my boobs and miss the feeling, size, and not a great lover of the scars - BUT i know they are not going to do me any harm - now or ever!
I know that at 45 my children were older and I didn't have to think about breastfeeding. I do know that when I did have the opportunity to breastfeed my children, fed one no problems and then the other just didn't gel. She was bottle fed and is now 18 - beautiful, intelligent and showing no sign of ill effects from bottle feeding :-)
I am not meaning to dimiss the breast feeding lightly, but at the end of the day it is your own peace of mind which is the most important now and only you can really make that decision.
Trust that your decision is the best one for you at the time you make it.
Look forward to following your journey.
Bye Leanne :-)
- ChalMemberHi Melanie, I chose to have a bilateral mastectomy because of my family history. I have recently had genetic testing but do not have the results yet. I was 40 at diagnosis December 2011. I have one son and didn't plan on having any more children therefore the decision was relatively easy for me. I have since then had my reconstruction completed with tissue expanders followed by silicon implants, nipple reconstruction and tattooed areola. I am very happy with the results and have never questioned my decision. I have also recently had my ovaries removed. Whatever your decision, it needs to be right for you. Chal
- melanieg51MemberI guess I'm interested to know what factors steered you towards having a bilateral masectomy? In my particular situation my Dr suggests that I wouldn't be significantly better off having a masectomy, but I'm so fretful about the possibility of recurrence especially since I'm under 35. He understands that it will really be my choice in the end. Can I ask what what stage you are up to. How long will it all take for you?
- kel016MemberHi melanieg15, I would love to give you my thoughts and current progress on doing exactly what you are thinking about doing. I only have a couple of minutes right now but I will respond and answer any of your questions. I'm halfway through the op so hopefully I can help xx