Double masectomy with diep reconstruction

[bluesatsuma]

Hi all, now my last chemo is done, my thoughts turn to my upcoming diep reconstruction. I’m having both done for risk reduction, though only cancer in left. My cancer is multifocal grade 2 IDC with DCIS and some lobular. I’m 47 and have 3 kids. Fairly fit, though chemo made me less so. Ive already had ALND and 3 lumpectomies/cavity shaves. I recovered well from these.

Please shower me with reassurance and any tips to help, as i am so scared about diep. I know my hospital stay will be 4 days and that my op will take approximately 10 to 12 hours. Ive bought a v shaped pillow. Do i need special clothing! I have a front fastening bra from other ops. Will normal shaper pants help?

Thank you for any top tips or reassurance. Xxx

[Tili]

My dear Bluesatsuma,

You are one very brave girl, been through so much, so positive which is the most inspiring thing to read, as you said you have recovered from all your other surgeries very well, so finger crossed you will follow suit.

As regards what you need, pants and bras are perfect, don’t going lots of PJ as the hospital gowns are the most comfortable, maybe after a couple of day a track suit maybe nice to wear, as you should be sitting about.

Take good care, one day a a time as we all know surgery is not a walk in the park, your going to need all the help offered, especially with a young family.

Wishing you and your family a very happy Christmas with lots of luck for 2025.

Don’t forget to let us all know how you’re getting on we are all rooting for you.

Much love Tili

[bluesatsuma]

Thank you @Tili. It’s certainly been a longer journey with more challenges and kinks in the path than expected. But I am positive it’ll be okay soon. Hope you’re ok too my dear. X

[Kay0987]

If you’re like the most of us, the first week will be tough due to the stitches and the posture you must maintain to protect them but after that it gets better quick! When my last set of drains were ready to come out I was released to go back to normal. Which I did at three weeks The only thing I couldn’t do was lift anything over five pounds and not do abdominal exercises. And the five pound rule only lasted until the six week mark. Now the abdominal exercise ban lasted six month but I just did other things. So good luck but truly you have this and will be soon on the other side.

[bluesatsuma]

Thank you do much @Kay0987. That is a really positive reply. Very helpful. I really hope I recover as well as you did. I am not a very patient patient, and find it very hard to rest when I can see things that need doing. Sounds like I’m really going to have to try to rest though, at least for a week or two! How many drains did you have and do they hurt? Xx

[Kay0987]

I had six and no they didn’t hurt. They were annoying though and sometimes got irritated around the drainage hole so I’d need to put some cotton around it or something similar. But nothing that keep my up at all. And taking them out was easy. And yes you have to rest. Period. The more you move after a DIEP the more you produce fluid that goes into your drain. And they have to have drainage go down to a certain point to make the drains go away. And you definitely don’t want to delay them coming out.

[bluesatsuma]

Thanks @Kay0987. I will trt to rest!! X

[Summer-sunshine]

Hi @bluesatsuma

I wish you well and as daunting as it is the surgery will be worth it, as you know I went through double mastectomy with DIEP reconstruction in April.

Being a list person this is the list I drew up for my DIEP which I have added some notes to:

For hospital 5 night stay (I wore my hospital day clothes in)
2x cotton, front fastening tops, wrap, button or zip
Cardigan or hoodie
Elasticated day trousers

Pjs front fastening
Dressing gown
Slippers
2 x Front fastening bra’s (Bra band size bigger), Asda, M&S do great ones, as long as they are adjustable and comfy, they don’t need to be post-surgery ones as you won’t need the pockets, so a sports bra or tee-shirt bralette would be fine.
Big knickers
High-waisted medium support shapewear size bigger, or cycling/running shorts, wear cotton pants under to be able to wear each for a couple of days

Eye mask
Ear plugs
Sippy water bottle - useful post-surgery as you need to keep drinking plenty
Toothbrush and paste
Simple shower gel or something like this and shampoo (some hospitals might supply it)

Mobile phone/ tablet
Long charging cable mine was 3m and so useful!
Wired earbuds (not wireless to likely to drop)

• Audiobook
• Podcast
• TV series - Grace & Frankie
• Music
• Book? (I couldn’t concentrate enough to read)

The main thing is to make things easy and comfy for yourself, at the hospital where I had my op I was out of bed the morning after my op and I was encouraged to change into my day clothes on the 2nd day after my op. My plastics team were relaxed about me wearing shapewear and suggested either light/med support, cycling shorts or leggings nothing too tight, likewise with the bra, but it is best to listen to your team as they will know best.

My concentration was zero so I watched easy to view tv series and listened to music and an audio book, the wired earbuds meant I wasn’t worried about dropping wireless earbuds (I am clumsy).

I stayed in for 5 nights with my hospital to try to get all the drains out, but many people are discharged after 3 or 4 nights.

When you come out of the hospital make sure someone can cook for you, maybe have meals in the freezer ready, accept help from friends, and if you are a tea addict like me watch out for the big milk bottles and full kettles as you shouldn’t lift either post-op (my husband decanted milk into a small jug for me).

I can say that following my DIEP I am really pleased with my new boobs and body, and it was worth it to be rid of the cancer.

Hope this is useful and all goes well with your op xx

[bluesatsuma]

Amazing advice and tips @Summer-sunshine. Thank you! I will take all that on board. I’m seeing surgeon and the reconstruction nurse on monday to discuss further, and the nurse will go into details about what i will need to do at home to prepare.

Can i ask, what was sleeping like? I’m considering borrowing a recliner. Would that be helpful in first week or so?

Thank you x

[Summer-sunshine]

Hi @bluesatsuma

All the best with your appointment on Monday, I am sure that currently it is all a bit of a whirlwind for you, but it will be worth it.

With sleeping, it was ok but I’m not the best sleeper at the best of times and I found lying on my back the most difficult part! I bought loads of pillows of different firmnesses to prop myself up with, and they worked a treat; also, I needed to sleep with one under my knees. I also, came out of hospital with the tummy drain in, so that didn’t help with sleeping either but that was just for a few days.

You mention borrowing a recliner; just make sure you can get out of it easily, as you will be taught how to get up using a rolling manoeuvre to prevent putting pressure on or twisting your tummy area.

I hope that helps?

xx

[bluesatsuma]

Hi again @Summer-sunshine. Thank you for your advice again. I wondered if a recliner would mean i could sleep downstairs so i didn’t disturb husband. But he is happy to put up with me shuffling around trying to get comfy. I’ve got v shaped pillow and lots of different pillows so will probably be ok.

Thank you again x

[ame1]

I am almost six months out from my DMX with immediate DIEP and do not regret it. I will not lie, it is a difficult surgery and isn’t for the weak - but I love my outcome even with a few setbacks. I went home the next day so cannot give any tips for the hospital stay.

I had two mastectomy pillows, one stayed in the car and one for my bed. The hospital gave me heart shaped pillows for under my arms I used when I was sitting. I also had a small pillow that I wore under my seatbelt over the incisions. I had two lanyards - one for the shower and one I kept in my bag I took to the doctors office to the hold the drains. I also had a shower bench to help when I was tired and needed to sit down. I slept in husbands recliner for the first week and then gradually moved to the bed. We have an adjustable bed so I didnt use anything except for extra pillows and a pillow under my legs (instead of pillow wedges) when I did transition. My surgery was in the summer so I just wore button up dresses every day. I woke up in a masthead bra and the hospital gave me an extra one, so I didn’t have to buy another one. Make sure and use clean washcloths in the shower for your incisions each time. Two of my four drains were problem children, but for the most part did not cause me any issues (just uncomfortable). I also used gauze that I cut a split in to put under the tubing next to my skin. We installed a bidet prior to surgery and that was the best purchase. My husband works from home and was my caregiver. He had alarms for my medication so that we stayed on top of pain control. My work set up a meal train which was nice. You will have T-rex arms for a bit, so make sure and move stuff down so it is within reach. Make sure you are eating enough/extra protein to help with healing. I was in a binder for 8 weeks, then was switched over to compression. I bought disposable underwear, cut out the crotch and wore it under the binder as it was irritating on my skin, some used old shirts which work great too.

Wishing you all the best!

[bluesatsuma]

Wow @ame1! This all sounds terrifying, yet you are extremely positive! I didn’t know any of this would happen. However, thank you so much for taking the time to reply with this detail as it gives me a realistic view of what to expect and lots of good advice. I hope you are feeling well now and happy. Xxx

[ame1]

Sorry for the late response, I have been traveling (went to MD Anderson for a 2nd opinion and ultimate transfer of care), and my phone was not cooperating with signing in. I am sorry it sounds terrifying. I guess I would see it the same had I not seen my daughter go through it first, and know that is what I wanted if available when I was diagnosed 4 years after her. I do not regret my decision. My PS is wonderful and my Foobs feel completely normal. I even asked my husband to ‘cop a feel’ over my shirt and tell me if he did not know would he think they felt like normal breasts and he said yes. They are nice and soft. If you ever have any questions, please feel free to ask. There are also a few good DIEP groups on Facebook.

I wish you well with your surgery and Merry Christmas

[bluesatsuma]

Thank you @ame1. I guess you are in America, so things might be different. However recovery will be similat. I’m seeing my reconstruction nurse on thursday to go through everything.

Thank you…and a merry Christmas to you too.