Recovery after mastectomy and diep reconstrution

I have had a right side mastectomy previously and, having found out I have the BRCA2 gene mutation, I will be having an elective mastectomy and reconstruction on both sides (DIEP flap). Surgery will be Jan 13th.  I have a 2 year old daughter. We have no family support but I have my husbands support and offers of help from friends.

What I am trying to find out is a realistic idea of how long recovery will take and what I will be able to do by what time.  My husband wants to understand if he is looking after our daughter how much care he will need to provide me and what I will be able to do by myself.  He might be able to work from home some times but I may need to be left alone at others.

Also, when will I be able to lift my daughter etc etc.

Just hoping someone has experience of this and can give me a rough idea. I know recovery will be much longer than for my mastectomy as the surgery on my stomach will be major.

Thanks

Hi Ruth

I can’t answer your questions but there is a very good closed Facebook site for ladies who have had or are about to have reconstruction, I am sure you will get answers if you joined it’s called Breast and Mastectomy Reconstruction Uk, I am seeing the Plastic Surgeons in Feb to discuss my options and it has ben very helpful for me.

Good Luck and Best Wishes

Mary x

 

Hi Ruth - I’m from May 2017 Chemo monthly group and one of the ladies on our forum Rosie65 - I’m quite sure had this surgery - it might be worthwhile you browsing our group and maybe asking her your questions.  We are a friendly group of ladies and no-one will mind you asking your questions.

 

We are all approaching the end of our active treatments and we have lots of knowledge/experience between us now!

 

Good luck and hope someone is able to answer your concerns very soon x

Hi Ruth. Im too facing a further mastectomy and diep due to brca 2 gene. My surgery date is yet to be set as i havent finished chemo yet. I dont have same issues with young child as you doz, but was told by plastic surgeon first couple of days (in hospital) are worst and i would gradually improve ovet coming weeks. Wishing you all the very best for your op and recovery and would love to know how ot goes. Xx

Thanks for replying. I am hoping my op date doesn’t change. I have been told it might be put back because of flu admissions. I’ll let you know how it goes and best of luck with getting through the chemo. One step at a time xx

Thanks girly888. I appreciate all the info. Could i ask you about pain and pain relief. I was in a lot of pain after my first mastectomy and and pretty scared xx

Thanks Jay68. Good luck with the rest of your treatment and moving forward xx

Thanks for the info maryminder. Much appreciated. Good luck with your future surgery x

Hi Ruth

i had a double mastectomy with double diep recon in August 17.

you will need a lot of help when you come home to shower etc Especially first two weeks. it is especially hard with a double as you can’t lift either arm. Fatigue is there for quite some time. My surgery was nearly 12 hours and I then had a further op 3 weeks later due to the would opening I lost a small portion of the breast!  But even with this I would def recommend,  the results are excellent BUT minor complications I think are quite common with double procedures.

you won’t be able to have your little one even sit on your lap for few weeks and def not lift her up I would say at least 8 weeks from my expierience.

the first night is certainly the worst but mainly due to the heat if they use a bair hugger to keep you warm, take some flannels with you and get the nurses to wet them and put them on your forehead and neck as the heat is pretty intense.

it really is worth the recovery time and each day you will feel better but it is more difficulty having the double in terms of  needing more help when you come home.

if you need more info please ask and try not to worry the waiting is the worst bit. 

SL x

Thanks. Just want it over I guess. I’m allergic to anything codeine based so was worried what they might give me. I’m glad to hear you say it was worth it even with some healing problems. Xx

Thanks so much for all the info. This really helps. I am dreading not being able to huggle my daughter but I know that I need to have this operation now. Don’t know how you feel but once you have had cancer it seems like you can never put it behind you. I was diagnosed 5 years ago. I hope this operation will allow me to move forward. Thanks again so much x

Girly888 - Hi I have just read your post along with the other ladies and found what you have said is really helpful! :slight_smile: I’m having my single DIEP operation on Tues 9th January. Knowing that I’ll feel like I’ve been hit by a truck, bus, car over the first 3 days prepares me for the worst ? I like your BC nurses analogy!
I’m 6 weeks post chemotherapy FEC & PTH and have started to feel quite ‘normal’ again, so 6-12 weeks of post op recovery I’m not looking forward to greatly, but I’m glad I’m getting the next bit dealt with. I keep hearing that the hot air blanket was for most the most unbearable part in hospital. I am armed with a small fan, flannels and Magicool ?:snowflake: In the hope it counterbalances the rest of my body overheating!
How long did it take for you to feel comfortable washing your hair, bending, pulling, reaching? I’ve got help at home for the first 2 weeks pretty much round the clock, then everyone will be back to work & school week 3. What are your thoughts on your symmetry operation? Do you feel ready to go through it after everything you’ve been through and have you got good support?

For those ladies having their operations after me, I plan on posting daily as to what my experiences are in my hospital treatment and at home to give you a picture of what you may expect. I appreciate that we all respond differently to treatment etc, but you may also relate to any similarities and not feel ‘different’. First post will hopefully be on Weds.

Sib - I just wanted to say hi and that I’m another lady who is going through the DIEP surgery (next week). I’ve recently stopped chemotherapy FEC & PTH and just wondering how you are getting on? I found my last cycle of chemo the one I felt most tired with, but there is Definately light at the end of the tunnel. Post chemo I am starting to feel pretty normal. My main complaint is numb toes and sore soles. It’s a side effect of Taxol unfortunately which I’m hoping will wear off. On the positive, taste does come back! You can begin to start enjoying food again. I hope you are doing ok with SE’s and I’m cheering you on xx

Sisterlylove - I have just read your posts which have been really useful - thankyou! If there’s one thing this site gives you it is openness and honesty about our experiences going through treatment of this nasty disease. How are you getting on now that you are weeks on the other side of surgery and are you having any hormone treatment etc?
I’ve got my operation next Tuesday, I have Herceptin jabs every 3 weeks for a year and planned Tamoxifen ongoing. I hope you are feeling back to normal as much as you can be, hugs xx

Ruth - I just want to say hi and wish you well for your op on 13th. It can’t be easy having to go through all of this again but will be worth it in the end. We too don’t have any family around but have really good friends on hand to help whenever needed. I’m not looking forward to being restricted with movement post operation. Looks like reading is going to be my go to to help get through it. I’m pretty house proud so it’ll be frustrating for a few weeks with teenage girlies and a partner who’s hobbies end up all over the house ? Oh well! Happy to exchange post op experiences. Hugs xx

Thanks for your post Andi71. Good luck with the surgery. I will read your updates. I now plan to get a small fam and magicool! Xc

Thanks for your good wishes Andi, hoping all goes well for you on Tuesday, will be sending positive vibes.

My last Carboplatin chemo is 17th January. I too have numb fingers and toes from Doxetaxol, which was stopped as i had extreme side effects which caused me to be hospitalized .
Im having a wee holiday i Cyprus in April before i under ho my mastectomy/reconstruction as I really need to tecover fully from brutal chemo regime.
Please let me know how you get on when you can.
Big hugs xx

Glad to hear you are doing well Andi71. Thank you for your update. Can you let me know about pain management in hospital and the pain level at home? Also, what is your movement like after a couple of weeks? My operation was supposed to be September last year and was cancelled due to lack of staff. Now it has been cancelled twice in Jan due to the flu crisis. I have a new date of Feb 24th and I really hope it goes ahead. Wishing you continued success in your recovery. Are you happy with how your new breast and stomach look like at this stage? Best wishes and hope you get a good night’s sleep soon, Ruth x

Thanks Andi71. Your response has been incredibly reassuring. Continued success with your recovery and I’ll let u know how I get on. Ruth x

I am a way of my planned double DIEP as i have another 8 weeks of chemo and a period for it to clear my system before then but thank you all for sharing your experiences. i can see all cases are different so will hope for the best. Mine will be to reconstruct one breast that has been removed 18 years ago and the other that will needs to go now but the surgeon says he can do this with the amount of tummy fat i have but my breasts will be slightly smaller. this is not my main priority so i am not worried about that. i just want to finally be able to wear a normal bra and feel normal again. i know they will not look as they were but think what they can do now will be what i am looking for.

 

Thank you for all this information.