How Bad Is A DMX? - Considering a Prophylactic DMX

macdebbie

I just met with a new breast surgeon (the one who did my lumpectomy is no longer practicing) to discuss prophylactic DMX or SMX.

I had a lumpectomy in my right breast in 2021 - small tumor (3mm), good KI67 score, no chemo. I'm age 67, will be 68 in October.

I get annual MRIs due to very dense breasts, and a "suspicious" area was found. I underwent an MRI guided biopsy which was NOT fun (mainly due to the positioning I was in, not the biopsy itself. During my time in the MRI machine, I kept asking myself - do I want to keep going through this year after year?

My dense breasts greatly increase my risk, so I am considering a prophylactic mastectomy.

I know a SMX/DMX is no walk in the park and there's a great deal more recovery time than with a lumpectomy, which to me was easy. But the surgeon I saw scared the daylights out of me - told me with reconstruction I'd be in surgery for 10-12 hours, that there was a possibility of infection, cording, range of motion issues, that because I had radiation it was unlikely I could do implants, and the recovery from the grafting was major, and there could be problems with the grafting itself which can be serious. I do not want to go flat.

I'm really upset, because ideally I would go direct to implants, or at least be able to have implants. My first breast surgeon with my first cancer NEVER revealed - nor did my RO that once I had radiation, I could never have implants. If I had known that I never would have had the lumpectomy/radiation, I would have had a DMX.

The surgeon acknowledged that my annual MRIs with contrast and then additional contrast if I require biopsies is a concern for kidney health.

So I feel like I'm between a rock and a hard place. I was hoping to get a balanced view of risk vs reward, but got the impression the reward wasn't great and the risk was enormous.

How bad, really is a DMX?

abigailj

If you’re talking about DIEP flap recon which it sure sounds like given the “10-12 hours” timeframe, then recovery can take a while - I was 62 with cancer in both breasts, I had recently quit smoking, was In average, not great shape and I did have wound healing issues (the smoking and my age def factors in that) so I was out on disability for 8 weeks. However even though recovery took a while and I had to have a revision to the bikini line incision because of wound healing issues and then fat grafting later on for optimal cosmetic outcome on one of the recon breasts (minimal discomfort from the fat grafting ) I’m very glad I did this type of recon. Your experience may well be easier if you do this if you’re younger and don’t use nicotine. I’ve read posts from other women who have reported healing without issues and being pretty normally active and back at office work in 4 weeks.

The most important thing if you decide on DIEP is to use a PS that specializes in this type of recon and has done lots of them. That will give you the best outcome. I can’t emphasize that enough. Best wishes with whatever path you take.

lalalalalemon

Hi! It sounds like he's talking DMX with immediate DIEP flap reconstruction?

I had a DMX for a stage 2 lump in my left breast (++-, non-genetic, I was 53). I could have opted for lumpectomy & radiation or a single mastectomy & implant reconstruction, but I asked for a DMX and bilateral DIEP flap reconstruction and got no pushback at all, they just scheduled it. I really didn't want implants and from what I saw, almost everyone who had a DIEP flap reconstruction done was very happy with their results.

I had the DMX with delayed reconstruction - they placed tissue expanders, and I had some wound healing issues on one side because the skin was so thin from the mastectomy that it had trouble recovering. The recovery wasn't too bad; I felt like I had my energy back fairly quickly. Once it was all healed I had my consult for bilateral DIEP at a different hospital (still in the UCLA system) because my regular hospital only did unilateral DIEP.

There are definitely risks with DIEP flap, especially if you smoke, and I think obesity is a risk factor too; when he was talking about the "graft," what he means is that when they remove the abdominal tissue (the flap) and move it to your chest, they also remove and bring the blood vessels that supported that tissue as well, and microsurgically connect them to the blood supply in your chest so the transplanted tissue doesn't die. Smokers aren't eligible for flap reconstruction usually because smoking affects the vascular system so much that it's very likely to fail.

The microsurgery is what takes the longest. The recovery is pretty tough; you can't stand up straight for the first couple of weeks because of the abdominal portion, it will hurt to cough and laugh, and you'll be limited to only 5-10lbs for lifting, pushing, and pulling for a while because you really need to rest and let those transplanted blood vessels heal. It's a big, big surgery; mine didn't even include the mastectomy portion, and it was still 12 hours and 4 surgeons. I stayed in the ICU for 3 days (standard after a DIEP) and then went home, but I couldn't do a lot for myself at first (nor should I have been, anyway!). If you go the DIEP route, you'll want to prep for the recovery period because you absolutely will need help for the first few days at home at the very minimum.

Now, that said… My DIEP surgery was almost 4 months ago, and I couldn't be happier with the results so far. I'll definitely need at least one revision surgery to clean things up and balance them, but I love my new flat tummy and "foobs." I would absolutely absolutely opt for the DMX & DIEP again. I didn't have radiation but from what I understand, DIEP (or similar flap procedures) is one of the only ways to handle reconstruction after radiation; they can replace the irradiated skin with "good" skin from your abdomen. I had a tattoo around my navel before the surgery - now I have a totally blank tummy around my navel, the top 3/4" of the tattoo is at my bikini line but stops at the hip-to-hip incision, and part of the tattoo is now part of my left underboob. :)

The thing about flap reconstruction is that once you're done with the surgeries, you're done forever. You don't need to swap out implants or worry about them. What I love the most about my new "boobs" is that even though they're two different sizes rn and one is much firmer than the other, they feel like me. When I touch them I can't feel my hand, but my hand feels me and only me, and that was really important to me.

I should mention that my cancer hadn't progressed to my lymph nodes, so I only had one node removed at the time of the DMX and have had no issues at all with the lymphatic system in that arm. If you go this route, and aren't squeamish or easily frightened, go check out some of the YouTube videos of the surgery and you'll get an idea of why it takes as long as it does and why the recovery is so hard. There are lots of not-gory informational videos too, but watching a condensed version of the actual surgery was really instructive.

Don't despair! You have options, and if he did mean DIEP, it's not nearly as dire as he said. :) I always figured even if the breast portion failed, at least I'd get a tummy tuck out of it. :P I was afraid of being really unbalanced with a flat chest but a big tummy!