I am planning on having a prophylactic bilateral mastectomy in the next few weeks. I have previously posted in the category of issues with dense breasts and ongoing surveillance. Thank you to all of you who responded to that. I have HER2+/ ER+/ PR- breast cancer. I was diagnosed in September last year and have very dense breasts. I have already undergone a lumpectomy and have just finished chemo with taxane. The sentinel lymph nodes were clear so I will not need to have any more lymph nodes removed.i have read all the previous posts relating to bilateral mastectomy and spoken to the breast surgeon. While she does not think I need a bilateral mastectomy, she is happy to do the procedure. I would be extremely grateful if anyone can tell me about their experience after having a bilateral mastectomy with regards to hospital stay, any issues, infections or complications. Can one manage alone at home post surgery.How long did you have to keep the drains, is it easy to manage the drains.Any other significant issues days, months or years after surgery.Your responses will be much appreciated.

Thank you AllyJay for sharing your experience.

Thank you Iserbrown for sharing the links, all information is useful.

I had my bilateral done in 2018 (aged 39) and my doc kept me in hospital until the drains were out. I live alone and managed just fine once I got home, was driving again 2 weeks later (albeit carefully). I didn't have reconstruction and I'm very happy with my decision to stay flat. My only complaint is that I can't seem to get comfortable sleeping on my stomach so I've had to learn to sleep on my side/back. Very minor issue in the scheme of things! I did have problems with part of the wound not healing but it was where I had nodes out rather than specifically the mastectomy scar. We have an awesome health care system though so I had a nurse come to my house daily to deal with it at no cost to me.All the best with your surgery!

I was diagnosed with Grade 3, Her2+ DCIS in 2012 and wasn’t given a choice about whether to have a mastectomy or not.I elected to do bilateral mastectomies with reconstruction using tissue expanders. I found it to be a very painful experience but once I found the right pain medication, I tolerated it well. It took 4 months for the expanders to do their job and I followed that up with an exchange with implants. I had to learn to sleep on my back as it was too painful to lie on my side. It took a long time for my body to return to a reasonable state of fitness and I had to learn to find a “new normal”. It’s been 7 and a half years and I can honestly say that I have had more peace of mind from electing to do the bilateral surgery. I had no issues with the wounds healing and no real complications. Good luck with your surgery and all the best :)

https://www.bcna.org.au/understanding-breast-cancer/treatment/surgery/types-of-surgery/https://www.reclaimyourcurves.org.au/latest-news/five-things-nobody-tells-you-about-getting-a-double-mastectomy

Bilateral Mastectomy - please share your experiences and views.

PV123
Member
6 years ago
Thank you so much @jintie.
jintie
Member
6 years ago
@PV123 Yes. I was still classified as a hospital patient.

i was with Cabrini - https://www.cabrini.com.au/patients-and-families/services/directory/hospital-in-the-home
PV123
Member
6 years ago
I will contact the breast care nurse tomorrow, thank you @jintie and @irb-03..

Did the health fund pay for the nurse visits @jintie?
lrb_03
Member
6 years ago
Talk to the nurses when you have your surgery, or the breast care nurse, if there is one, they may be able to help with suggestions
jintie
Member
6 years ago
I went through the private health system and had nurses visiting me everyday until the drain came out (the last one came out at day 24).
PV123
Member
6 years ago
Maybe I should have gone through the public system, hopefully I can manage the drains by myself.
Ahnn
Member
6 years ago
@PV123 i went through public hospital system and was visited by the Breast Care Nurse who provided me lots of information and support. I certainly didn't feel competent with the drains by myself and was very glad the community nurses came daily including the weekend.
PV123
Member
6 years ago
Thank you @Ahnn. My surgery is in the second week of February, I saw the surgeon and asked her if there is any help available after going home because my husband will be away at work all day and all my friends work as well. She did not mention about the community nurse and told me that I would be able to manage the drains myself.

Did you go through the public system? I would like to have someone come and help me with the drains, I guess if I get stuck then I will call the hospital.
Ahnn
Member
6 years ago
Hello @PV123. I had bilateral mastectomy in August 2019 following lumpectomy results of IDC in left breast and extensive DCIS in the right. Overnight in the hospital, most bandages off next morning to enable showering and home just after lunch with 2 drains in. Community nurses attended daily for 5 days to check drains and drains out on day 5. I agree, put things lower on shelves, get someone else to hang out washing. Take it as easy as you can. Sleeping on my back was uncomfortable so i used 2 horseshoe pillows to try and at least sleep on an angle with another pillow behind my back. Best of luck for surgery
PV123
Member
6 years ago
Thank you JeanineG, glad to know you are doing well.