7 months after DMX..SORE, swollen bulging, DRs are baffled

dillydilly

Hello Beautiful Ladies!

2/28/18, I opted for bi-lateral mastectomy, NO recon., lost 2 aunts to breast cancer. Mine was invasive lobular, so didn't form a lump...but still 2 doctors wanted to do a lumpectomy on a cancer that lacks a binding protein and travels in line patterns. Not until final pathology came back did they find out the invasive cancer also had insitu in there (which of course never showed up any of the imaging. If I had agreed to lumpectomy, I'd be sitting here with perfect reports BUT the cancer would be growing inside me. GO WITH YOUR GUT.

Now to the subject, my armpits were relatively flat after surgery, but on the right I did have a strange banana shaped swollen area wrapping from my back/side around to my ribs just under the right scar. VERY tender. I assumed it was swelling that would go down...just started my 8th month and it is still just as sore. After 2 weeks, the drain tubes came out, within 1 week, it was like water balloons were filling up in my armpits. Tender and very uncomfortable to put my arms down.

Surgeon who operated, tried to aspirate, but there was no fluid. He wanted me to have recon, so every time I've gone in to say "it's still there", he says, if I had recon I wouldn't have this problem. Went to 2 plastic surgeons, 1 does not help women NOT getting implants, he looked at me like I had 3 heads. (that brought on the water-works). The other, at 3 months said it was too soon, I had a lot of healing to do, he thought it was fluid, but he also failed at drawing anything out. Went to a new surgeon, he had no clue.

Am I the only post-mastectomy flattie with tender to very painful at times, armpit water balloons the size of tangerines (plus the "side banana") keeping me from sleeping (I'm a side sleeper...too painful now). I feel like giving up but I know I can't continue with this much discomfort. SEVEN MONTHS OUT.

Looking forward to finding somebody who went through this and know what it is and how to treat.

Thanks.

ksusan

So sorry! Have you been evaluated for lymphedema by a LANA-certified nurse?

dillydilly

Hi, that's what I initially thought since it was days after drainage was removed, but 2 DRs tried to draw out lymph fluid, nothing there. I asked for an ultrasound...also showed, no fluid. 1 DR said it's just fat, but I have been familiar with my fat distribution since I got Hashimotos 13 years ago. And fat does not hurt like this.

Thanks for listening.

dillydilly

you know, ksusan, I may just look into a LANA certified nurse, it wouldn't hurt.

I guess I'm just afraid I'll be getting treatments for a condition I don't have. The medical community is always happy to bill your insurance regardless. But, I'm sure they have seen a lot of women with issues, maybe I'll get lucky and somebody may be able to point me in the right direction. Thanks again.

mustlovepoodles

I ended up with huge fat wads under my arms after my BMX. My PS tried aspirating, but there was no fluid. I saw a lymphedema specialist, too. Just fat, like lugging around an ugly puppy under each arm.Ugh.

I had DIEP reconstruction last month, 2-1/2 years after my BMX. The first thing i noticed when i woke up was that the puppies were gone! So, I know it can be done. Finding the right doctor seems to be the issue.

dillydilly

Thank you MLPoodles! I'm not planning on reconstruction but I guess I will continue with PS's to find the right one. Why did you have to wait 2.5 years? Also, were the FAT "puppies" painful for you? Tender at best?

mustlovepoodles

My ugly fat puppies were tender for the first year. I had a type of one-step reconstruction during my BMX, but it all failed due to tissue necrosis (death.) What was left was two ugly mounds of folded, empty flesh that wouldn't heal for 16 weeks and the ugly puppies.

At first I didn't want anything to do with more reconstruction attempts. But as time passed, I began to think differently. I had planned to have a DIEP flap recon in 2017, but my mother took sick and she needed me to nurse her. Not a good time for such a major surgery. Mother passed in June 2017 and here i am a year later, 6 weeks post-DIEP!

sbelizabeth

Dillydilly, you don't have to have recon to have the BMX scars/lumps/puppies smoothed out surgically. A good plastic surgeon can revise ugly surgical results and provide a smoother chest. My mom had it done, twice.

Be aware that it's our skinny sisters who can have the perfectly smooth chests that continue perfectly smoothly around their backs. If you carry some extra pounds like I do, removal of the breasts in front also removes the fat of the chest that shapes the torso. I don't know why your puppies are tender, but I would see a lymphedema therapist, as suggested here, and consult a good plastic surgeon to see what can be done about revising the surgical sites.

Good luck! SB

dillydilly

sbelizabeth, I really really appreciate your reply. I'm going to specifically ask the PS's office if they work on "Non-Barbie-Dolls" So far, everyone just wants to build me some boobs.

I'm hesitant to see a lymphedema specialist because I've had 2 Dr's try and aspirate fluid and nothing came out. I also asked for an ultrasound just to check...no fluid. If I went to a LS, I'm afraid they would treat me as if it was Lymphedema (just to gain another billable customer) and would end up trying to massage these areas that are too sensitive to be pushed on.

I'm back under the knife Tuesday...total hysterectomy (cancer loves me), I wonder if they could do "exploratory" on me...I'm so desperate to find out what this side bulge is that causes the most pain.

Thanks again...be well!

BethHG

Just curious, are you wearing mastectomy bras with breast forms at this time? I know that my old mastectomy bras ( I bought my last on 5 years ago) used to dig into my flaps/ dog ears and it really hurt especially since the was major scar tissue there.

I found that wearing a Coobie bra with a foam form or Knitted Knockerhelped with that since it fits over the flap.

dillydilly

Good morning Beth, I was fitted at the mastectomy shop and did choose the Coobie...haven't worn it much, the "swelling" I have on my right side is just so painful when barely touched. This is separate from the armpit fat puppies, those are tender, but this MYSTERY elongated bulge, only on the right really hurts. It starts behind my right armpit, on the back and angles down and ends about halfway thru scar but below. Like a soft banana trapped under my skin. Maybe an MRI would show what's going on in there??? I have yet to find anyone who's described anything like this yet. I understand fat...but why so painful?

Thanks!!!

BethHG

I would ask for at least an ultrasound to be done. I will be praying that they find some answers for you.

dillydilly

Already had an U/S to rule out fluid (lymphedema) Nothing unusual.

Having a total hysterectomy Tuesday, maybe I can talk them into exporatory surgery there LOL