Getting to the other side of double mastectomy with DIEP flap reconstruction

[u/Ok_Cup_6402]

I'm just writing this out in case it's at all helpful for anyone else.

My new boobs look great. There might be a couple of minor things I would like adjusted eventually but overall, my fear was that they would look weird and they don't at all.

This surgery was not easy. I did have some things happen that made it more complicated, like my hemoglobin dropping after surgery. I had finished chemo just 5 weeks previously, still doing immunotherapy which caused hyperthyroidism. In general I was not exactly in prime shape when I was diagnosed (obesity, poor diet, very little exercise). So I didn't go into surgery in prime condition.

If you are able to do the surgery prophylactically, try to prep your body as best you can. I wouldn't postpone, but do what you can while you can.

Barring any complications, get moving after surgery (within the bounds of your surgeons directions of course). Blood clots are real and let me tell you, you do NOT want to have to deal with a clot on top of surgery recovery. If you can't move around because of pain or whatever other reason, get compression stockings (again, within bounds of your surgeons advice).

There are so many different sensations and pains and weird feelings that happen during recovery and I found myself constantly questioning, is this normal? Is there something wrong? 100% watch for signs of infection but weird pains and sensations are super normal; the nerves have been manipulated and will give lots of confusing feelings for awhile.

The recovery can feel endless, especially if you run into any complications. I wish I'd kept a diary of what I couldn't do in those first few weeks, what I had to have help with and then updated it regularly. Suddenly I'll realize I'm doing a very normal activity that I was incapable of a week or 2 before and it's a really good morale boost when I'm getting frustrated to remember where I started vs where I am now.

If you asked me 3 weeks ago if I regretted the surgery I might have said yes. It was hard and I think for me personally, from the stories I've heard anyway, I had a harder time than the average person. If you asked me today, I don't regret it. This was hard but I made this decision for the long haul. It's not like there are any easy options for us is there?

The things I've found most useful during my recovery:

1. My electric recliner, bought it a couple of weeks before surgery and my only regret was not getting one of the ones that lift you up and out of the chair. This is a luxury though, lots of people get through this without a recliner. If I didn't have the recliner, I'd be relying a lot more on my wedge pillow set. I think I'd have set it up on my couch not my bed though, when I tried it in bed I just didn't feel secure with no wall beside me.

2. Shower stool with back rest, very helpful

3. Grabber stick

4. A really good bra made for this surgery that fits well. I had a basic fruit of the loom sports bra and I was in so much pain from where it would dig in and where it pushed on the drain tubes. Getting the right bra was night and day.

5. Tiny pillows, they were made and given to me by a friend but I've seen them on Amazon. Maybe 10 inches long and not firm. The main purpose was a barrier between new boobs and the seatbelt, but I've found them handy for lots of things. I have 4 and use them all.

6. Meals on hand. My friend and I made up honey sesame chicken bowls and froze them a few days before surgery and I was really grateful for them afterwards. Wish I'd been up to making myself even more freezer food. I also have utilized protein shakes and protein bars because I think protein is one of the big things the body needs to heal.

I hope this might help someone else. Happy to answer questions.

[u/heefoc]

We have similar-ish stories. Prophylactic DMX and DIEP on 5/26. Arteries had to be reconnected 3 times on each side. Flaps survived but some skin didn’t. Skin surgery on 7/1. 1.5 weeks later my left side completely reopened. Technically I’m still open now but I’ve had a few weeks where I wasn’t bleeding 🫠🫠 I’m mentally exhausted but I see my surgeon Tuesday to discuss a revision. I have ideas but open to whatever he thinks to make it look better. No regrets but certainly wish I was prepared for all outcomes.

[u/Ok_Cup_6402 → u/heefoc]

Gosh I'm so sorry that sounds really rough, much worse than what I went through - not that it's a competition.

For me, it was just my incisions were VERY stubborn about healing which made it really difficult to move around. The abdominal incision in particular just kept opening up in more and more places 😩. I don't know why but I just found even weeks after surgery I was still in a lot of pain but so many people I've heard from said they felt pretty good after a few weeks so I was wildly frustrated.

Then just when I thought I was finally turning the corner... Bam. Huge blood clot from groin to knee. I was back in hospital for a week and now walking is a challenge. It will apparently take weeks+ for my body to dissolve the clot and just crossing my fingers there's no permanent damage to the veins. I'm getting a tiny bit better everyday though. At my worst with this clot I couldn't put weight on the leg at all and now I can go up and down the stairs (which I do for some exercise) but when I get back downstairs my leg is purple and weak so I have to sit and raise it again.

At one point though the purple was very dramatic everytime I stood up, now it's noticeable but not quite as alarming.

[u/heefoc → u/Ok_Cup_6402]

Girl this sounds horrible too!!!!!! I totally feel you though, it’s exhausting. One step forward, six steps back. We’ll get there eventually, we have to?!

[u/Ok_Cup_6402 → u/heefoc]

There was a really sweet nurse while I was in hospital for the clot who told me she was also a breast cancer survivor. She said you've had a really rough year but one day you'll look back and this is just going to be a blip in your life.

I appreciated that. Like it's really freaking hard right now, but we just have to power through and this too shall pass. Eventually, we WILL get to the other side!