Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

Post-treatment Edema vs Chronic Lymphedema?

mumuriri Member Posts: 26

Just wondering if other people have had this experience. I'm 3 months out from lumpectomy/SNLB (2 nodes), 1.5 months out from 20 radiation treatments. One thing of note is that I have had bouts of extreme anxiety that I needed to treat with Lexapro for several months, prior to my BC diagnosis.

Anyway, my question is: the swelling post-surgery (and re-swelling post-radiation) seems to have started in the surgery/radiation area then migrated downward and outward to my stomach and extremities. Am I crazy? Or is this normal / has this happened to other BC patients? I get mad anxiety so I'm not sure my brain is just trying to convince me that I have lymphedema. It's hard for me to tell if the sensitive / change in feeling of my arm is due to frozen shoulder/medial nerve issues I've been dealing with or if it's related to edema/possible lymphedema.

I did see a local LANA PT in the middle of my radiation treatment to get measurements done, and she said I didn't have lymphedema at the time. Because of the other recent swelling, I got a referral by my NCI team for an affiliated lympedema PT at their sister hospital but haven't made appt yet.

Background info/Swelling History:

Initially post-surgery/pre-radiation developed visibly noticeable swelling in breast/truncal area that extended under my armpit where SLNB had been around to under the shoulderblade, in comparison to my non-surgery side that is. No pitting or pain or anything. In 3-4 weeks that swelling receded to the point where it's only when I wear a tight bra that the right side "feels" a bit tighter, but I can't see any difference. I was told by my NCI team that it was just probably normal post-surgery swelling and should resolve.

Though that swelling went down, I subsequently noticed that the fat around my belly button was suddenly lopsided, and the fat under my upper arm on surgery-side felt much wobblier (I would do something and I would notice a jiggle sensation). The problem is, I also have shoulder/nerve issues related to surgery/biopsy that I am doing exercises for, so I constantly already have weird sensations in surgery side arm including nerves regrowing re: SLNB damage / sensitivity. When I measured the upper arm, it was the same circumference as the other arm still.

That lasted another 3 weeks or so, the wobbly sensation is much less noticeable and the belly fat seems to be more symmetrical now. But now this week I'm noticing that my surgery side forearm seems "bigger" than the other especially after I've done 45 mins daily exercise -- jogging with arms swinging etc. When I measure, it's within 1/4-1/3" of the pre-surgery measurement my husband and I took (not experts, with tape measure so prob. not even very accurate) from back in October. Unfortunately, I didn't have the foresight to measure my other arm pre-surgery.

My husband pointed out that I used to bowl a lot with a 15 lb ball, and my right arm might have already been bigger as a result. We measured his forearms and he had an even bigger difference between them. (Mine is about 1/2", his closer to 1"). I also had a scare on Monday when the top part of my forearm right before the wrist swelled to a little hump, but it was firm and the skin was itchy / had a red mark and I couldn't tell if it was a hives allergic reaction which I get a lot. It took overnight to go away. I have to mention, I checked for pitting for all these swelling areas and no pitting.


  • lw422
    lw422 Member Posts: 1,399

    mumuriri--it's really difficult to say, but usually surgical swelling is confined to the area of the wound, more or less. The "spreading" certainly could be LE. It might benefit you to wear a shaping tank or other light-compression top in case you are developing truncal lymphedema. Do pay close attention to any "red mark", especially if it seems to feel warm and begins to grow. People with LE are more susceptible to cellulitis, which can be life-threatening if not treated quickly. (Not meaning to scare you but there's a lot to learn about LE.)

    Hopefully your swelling will resolve and you'll never have to deal with lymphedema. You are smart to be on the lookout, so when you make your next LEPT appointment, ask for instruction in how to do self MLD (manual lymph drainage.) The more you know, the better you'll feel about it "just in case." My best wishes to you.