Forum Discussion
PV123
6 years agoMember
Bilateral Mastectomy - please share your experiences and views.
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 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.
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.
21 Replies
- JeanineGMemberI 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 :)
- PV123MemberThank you JennyD78 for sharing. I am glad your surgery and recovery went well.
- JennyD78MemberI 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! - PV123MemberThank you so much primek, it is great hearing about the individual experiences. I love this network and all my BC buddies. You are all so supportive.
- primekMemberI had a bilateral mastectomy in 2016 with tissue expander and matrix sling and then changeover in 2017. My expander were almost fully expanded at time of surgery. My full picture story is in the reconstruction group.
The 1st week was hard particularly as I hurt my back in hospital and was quite sick from anaesthetic. So a lot of my memory is about my back. The drains made it difficult to sleep so a recliner was helpful. Mine were removed in 7 days.
Sleeping on my back was the hardest. I found having a pillow under one side to tilt me helped and hugging a pillow.
I eventually was able to sleep on my side using the horseshoe mini pillow propped around the new boobs which elevated me off the boob and still a pillow behind my back.
I needed regular pain relief right up to about 5.5 weeks when suddenly I had no more pain.
I wasn't allowed to drive to 3 weeks.
You are restricted with pushing pulling and lifting for at least 3 weeks. So move things to lower areas.
Someone to do cleaning is a good idea if living alone.
Washing in tumble drier can get you through.
Maybe advanced meal prep. I used to get my roast ready but needed someone to lift in and out the oven. - PV123MemberHi Tmm19 - Good luck with the rest of your treatment.Thank you for sharing your experience.
- Tmm19_MemberHi, I had a bilateral mastectomy & axillary lymph node clearance on the 7th Jan this yr. I was diagnosed with lobular breast cancer in June 2019. I underwent 6 months of chemo prior to surgery & will be starting radiation sometime in Feb.
I stayed in hospital for 2 nights. I found the drains were more painful then anything. I had 3 in but left hospital with 2 & they were removed 9 days after surgery.
I was up out of bed the same day of having my op using the loo & showering the next day.I just kept up with having pain medication but you will need help around the house & with showering ect once you get home.I’ve had no complications as yet.I’ve been sleeping in a recliner the last two weeks with a pillow under my back.
My back starts to hurt if I lay down in the bed for to long as I still can’t roll over onto my side yet.Good luck with everything. 😊 - PV123MemberThank you Iserbrown for sharing the links, all information is useful.
- PV123MemberThank you AllyJay for sharing your experience.
- AllyJayMemberI had a bilateral mastectomy in April 2016. I was diagnosed with triple positive IDC and had six months of chemo prior to surgery, and was still on Herceptin until the November of that year. I have a number of other substantial medical issues which contributed to a massive bleed the night of surgery. Back to theatre to stop the bleeding. Nine units of blood and eleven days in ICU followed and then on the general surgical ward for a further fortnight. If I had not had these other issues, I am sure all would have proceeded without this complication. I was up to the loo and showering, (protecting my chest) from the second day of the second surgery without problems. I couldn't dry my back and lower legs for a few days, and the nurse helped me with this. No infections, thank the Cosmic Clowns! I had four drains to start with, then two, then the final two out on day five.My recovery after this major speed bump went smoothly, but had husband helping with jobs such as vacuuming and washing on and off the line. Did have a seroma forming on the left side which was drained twice without further issues. Am still flat and fabulous and only wear my false titties when going out, and if I can be bothered.