My mother was diagnosed with breast cancer at the age of 36. My grandmother, who has since passed (from unrelated issues) had a mastectomy to one breast in the 90's. The thought of all this makes me sick, and although I am yet to go through further testing, I have been considering a Prophylactic Mastectomy & Reconstruction since I was 18 and it has been playing on my mind for years. The thought of such invasive surgery gives me the shivers. I have also been waiting fuller breasts since my teens, so the thought of just implants wasn't enough for me to contantly think, what if they miss cancer at breast scans. I do not have children, although I am currently engaged and I do plan have them within the next 5 years, I am not concerned at all whether I can breastfeed or not, as my health is just as important and making sure I will be 'healthy' as my children grow older.So here I am, on BCNA, starting my journey into eventually proceeding with a Prophylactic Mastectomy & Reconstruction. Has anybody here had this procedure, even having not being diagnosed with Breast Cancer? Is there alot of out of pocket expenses, or is this a good time to take out private health cover? Any other awesome information that may be helpful or and info on the first steps I can take?

I am sure there are others on this site who can answer your questions. It is a huge decision which only you can make. Good on you for researching information and where else could you get better advice than this site. Good luck. XLeonie

Hi Cameron, while I'm not in your situation, I did go through genetic testing to see if I had the gene which would have influenced my daughter and sisters actions. During all this my sister came across a DVD called Pieces Of Me, a short doc about 3 australian sisters who had the gene and where trying to decide what to do. It's really worth a viewing if you can get a hold of it. Good luck to you Louise

Thanks so much. Will check it out. I've found it very difficult to find answers regarding a procedure like this. It's easy to get information on how it is done and recovery but not how to actually get there. I'll have a referral letter tomorrow from my doctor to head to a specialist. At least that's a start! ?

Thanks Leonie. I hope there is too!

Ps. I've found it in YouTube and I've started watching it. Very interesting, thank you! It's funny, I'm the middle of two sisters, one who's 27, the youngest whose 10 and me whose 25.

Prophylactic Mastectomy & Reconstruction

13 Replies

JenAli
Member
13 years ago
Hi Cameron, consider getting your GP to refer to a breast surgeon as you are under 50 years of age, if a breast surgeon refers you, you can have medicare funded yearly breast MRI's. This is highly specialised and can only be done by some MRI specialists but a breast surgeon would know which ones are approved. Breast MRI's are much more accurate for a young woman with dense breasts (because you havent had kids) and so would be much better and more accurate for you than having mammograms.

Ive had a single mastectomy and DIEP flap reconstruction 5 weeks ago'for early breast cancer called DCIS.'I couldnt face doing both breasts. I have two sisters who have had breast cancer one at 37 years and one at 62 years. My family are Braca gene negative. You should look at gene testing too.

I'm sure you will look thoroughly into this but at the moment my Diep flap feels like a hard lump of numb flesh on my chest wall. I look fine in clothing but it looks really ugly naked like a patch work quilt of scars, as I had problems with skin infection and loss of blood supply.

Implants look like false plastic barbie boobs that sit up all the time and can feel cold. There is quite a high rate up to 10% of problems with implants; adhesive capsulitis , deformity etc.

I dont mean to scare you but you need to go into this with both eyes wide open and consider getting more effective screening with MRI's for a few more years. It wont prevent cancer but will pick it up early. Remember even total mastectomy does not eliminate your risk of breast cancer entirely (stiil 1-2%) particuarly if you have the breast cancer gene.
wendyb
Member
13 years ago
I was in your position about 18 months ago when they discovered I had DCIS in one of my breasts. Upon advice from the breast surgeon and genetics counsellor, opted for bilateral mastectomy with reconstruction. I recently celebrated my 1 year anniversary from my surgery to put in the implants.

without private healthcare I probably wouldn't have gone through the private system. But the benefit was that I had all of my surgeries completed within 4 months.

I am happy to share my experience with you. I have already written about some of my experiences with other posts. Feel free to connect with me and we can email.
Em
Member
13 years ago
Sorry iPad sent below comment an extra time
Em
Member
13 years ago
Sorry iPad sent below comment an extra time
Em
Member
13 years ago
Sorry iPad sent below comment an extra time
Em
Member
13 years ago
Same as above
Em
Member
13 years ago
Same as above
Em
Member
13 years ago
Hey, Check out the pink hope website, it maybe helpful. Sorry i can't give you any other information. Good luck with it all :)
cameron
Member
13 years ago
Ps. I've found it in YouTube and I've started watching it. Very interesting, thank you! It's funny, I'm the middle of two sisters, one who's 27, the youngest whose 10 and me whose 25.
cameron
Member
13 years ago
Thanks Leonie. I hope there is too!