Hi,
I met with my surgeon to discuss a left side masectomy. I’d like a diep reconstruction. To everyone’s knowledge, the right side is clear, but due to a fourth tumour being missed in my left side after 3 lumpectomies, the surgeon agreed the right side could be looked at too. She also agreed that given the long and winding road so far, a bilateral masectomy could be done. I will be having an mri to check the right side.
I know a diep reconstruction is a big operation. Is there anyone here who had bilateral diep? What was it like?
Would it be a lot harder to recover from a double than a single?
I’ve just been through a single DIEP, so not the same, but I had a great surgeon and I’m happy with the whole process. I bounced back quickly, 5 weeks post surgery now and I’m at about 80% back to normal.
Double would difficult, I relied alot on my other arm during recovery. But you’d get through it. I think it’s common to have a DIEP and reduction on the other side as well, so there are plenty of people who have surgery on both at the same time.
Thank you for your reply @bluehourd . Good to know youve bounced back so brilliantly. I hope I’m the same. Leaning towards just the one side unless the mri says there is more cancer. Wishing you a continued good recovery x
Hi @bluesatsuma
I had a double mastectomy with implant reconstruction so no diep. Healing from the mastectomy was straight forward the rules of arm movements and lifting apply whther you have one or both done.
I would think if the surgeon was happy to do both at the same time then go for it. Then it is only one op and one recovery
I’ve heard a lot depends on your own physical strength and stamina beforehand. I had a lumpectomy 14 years ago with chemo and rads. I recall the worst part was the doctor visits and follow ups and not so much the healing. When my cancer came back this year my first thought was crap this will be time consuming. I’ve decided to have a double mastectomy with DIEP reconstruction. There is a lot of sadness in this decision, but I have already had radiation and the chances of implant failure are high. I only have cancer on the left, but there is no way I am going to go through this only to find out the right will get it in 5, 10 or even 15 years. I also have symmetrical breasts now so hoping they will be the same later. The plus is no more mammos.
By the way, I am preparing by getting button down nightshirts, bed wedge pillow for upright sleep and girdle type gym shorts. My plastic surgeon/hospital will supply a drain shirt, bra and abdomen panty. I’m scared to death, but trying to stay optimistic and positive. It’s hard to do.
I think we have been in contact previously? Really sorry to here about your having to make this difficult decision.
I had a bilateral DIEP reconstruction at the end of April and it was absolutely fine. I was in hospital for 5 nights which was my choice and could have probably been home after 4 nights. The morning after the opp i was up in a chair, showered the next day and able to slowly pootle around the ward by day 3. The week following my surgery i was going out for short walks a couple of times a day and increasing so that by week 3 i was walking a mile or 2 with coffee breaks. I also increase my exercise by walking and doing some basic pilates prior to the surgery. Post surgery I did all of the recommended exercises religiously and still do some stomach exercises now.
My results are fantastic and i don’t regret asking for the bilateral procedure which was done at my request. I had previously had high grade DCIS in my left breast in 2020 that was successfully treated and then in my annual scan DCIS was detected in my right breast ending up with this tough decision.
It is obviously your body and decision, so i can’t say what is right for you. It has removed so much worry about the what ifs, the down side is lack of the full sensation in my breasts but to me that has been a small price to pay.
I feel your fear @rockym and I share it too. You seem a bit further on with it all than me as I’m still at the not sure whether to have one or both stage. I have no cancer in my right but want to have both done due to the errors in diagnosis and delays in my left side treatment. The surgeon agrees that I’ve been messed around considerably and with a formal complaint in regarding misdiagnosis and the worsened prognosis because of it, they are keen to help me out. I am not sure yet if i will go for one or two, but i am thinking 2.
When is your op?
Hope everything goes really well for you. Kerp me posted. X
I love this positive ‘out the other side’ post @Summer-sunshine.
It sounds like you recovered really well and that your results have been great too. May I ask if you were able to use the toilet, dress, shower independently after op? Did you manage to keep the wounds dry?
I took things carefully, and was able to go to the toilet independently after the catheter was removed. I was able to dress using front fastening bras and tops with elasticated trousers.
Showering again with the modern dressings wasn’t an issue. At home it depends on your set up as I have a bath that you have to step into which was a bit tricky i know some people who have used a step to help them with this. Lifting i found most tricky as you shouldn’t lift full kettels or big bottles of milk, and reaching high shelves wasn’t possible to start with. I manage by making sure things were kept on work surfaces or lower shelves.
My dressings were remove a week after surgery as i had a reaction to them, so needed antibiotics but all was fine. I also had a slow to heal belly button which the nurses gave me dressings that i used at home and it is now a very normal looking belly button.
I was able to be independent on leaving hospital but you will be delicate and it is good to have people around you in the first couple of weeks following the surgery to help when needed.
This is so promising! Thank you for sharing your positive experience. So often I hear or read the worst. I know that is what people may post more about, but hearing that you were having short walks and starting to get exercise again in reasonable time gives me hope. I hope to be like you and come back here to post the results are fantastic. Love that for you and hope that for all of us.
I have a CT on my tummy to check blood vessels. After meeting plastic surgeon, he was more than happy to do both but has booked mammogram on right side to check. I have to decide by 16th…one lump or two? Head says 2, heart says 1. Thank you for all the solidarity and advice xxx
My left breast had the first cancer in 2011 and now again in 2024. I feel lucky as it appears I had a greater chance of a metastasis then a local recurrence so there is that. It seems like there has been many advances in reconstruction from years ago. I am also older and have a very different outlook on life so here are my reasons to go with removal of both.
Because I have no choice in reconstruction due to previous whole breast radiation and I have only had one surgery in my lifetime, I want a one and done approach if possible.
Oops… forgot to mention my upcoming surgery is a DMX with DIEP.
I want symmetry of my breasts. I have enjoyed this for years and even after my lumpectomy, my breasts looked as they had before. I know I am the one who has to look in the mirror and I know this would help with my emotional healing.
My right breast has never shown problems, but since the diagnosis has strange nerve pings at times. This could be psychological, but odds are the right side has something going on, even if it isn’t cancer. I do not want to come back in a year to find out those pings were something developing.
Lastly, I do not want mammograms any longer. I do not want anymore poking and probing. I prefer to take my Arimidex and move on with life. I’ll check in with my oncologist and maybe there will be some type of screening every few years, I’m not sure.
This helps a lot @rockym, thank you. I’m leaning towards the double. I did have mammogram on healthy side today which will help my decision, but i am leaning towards double for the same reasons you mention. Hope you get all sorted too xxx
It sounds like you are on your way to making a decision, which is good to hear.
I like @rockym decided on the double mastectomy for a variety of reasons, not least because of knowing I have done everything in my power to prevent going through the past year again.
This is only a decision you can make but if you need any advice just ask.
