Lymphedema aggravated by PT - what to do?

Rubiayat

I have had some swelling in and under my armpit on along the side of my torso since my first surgery in December. My doctors have said I don't have lymphedema. Well, I started PT three weeks ago. I think she is a certified LT, but I'm not sure. She seems great and thinks I may have lymphedema under my armpit and on my trunk or it could be post surgical swelling as I'm only 9 weeks out from my mastectomy. There is no swelling in my arms. A week ago I developed a hard lump (quarter size) on my side where my breast meets my torso. It is definitely on my side and not in my reconstructed breast. Haven't seen my surgeon yet to get his opinion on what it could be. PT thought it could possibly be a swollen muscle as I had just started doing yoga again before I noticed it. She massaged the area very firmly and the next day I was sore and now I have more swelling in my armpit and on my side. Could this be lymphedema? Did she aggravate it? Shouldn't you be more gentle in an area where someone might have lymphedema? It makes me think she doesn't know what she is doing and if so, who do I see now? I just don't know who to go to for help as my other doctors don't seem to think there is a problem? Any advice would be much appreciated:)

Jennie93

Pretty much the EXACT SAME THING happened to me!!!   Sorry to shout, but I was so relieved that I'm not the only one, lol.   Let me see if I can find the thread I started at the time.  But anyway, yes, I too had 3 or 4 docs, PT, etc. telling me it wasn't LE but indeed it was. They are all in denial, or won't admit how ignorant they are, or something.   Uggghhhh

Binney4

Rubiayat, I'm so sorry! Here's information about how to find a well-trained lymphedema therapist near you, as well as suggestions for questions to ask when you find one:

http://www.stepup-speakout.org/Finding_a_Qualified...

In answer to your specific questions, yes it could be lymphedema. (Here's more information about truncal LE: http://www.stepup-speakout.org/breast_chest_trunc…) And yes, the work she did might have aggravated it. But it's also common practice for LE therapists to do some breaking up of fibrosis and adhesions before they can work on moving the lymph fluid out of the area. Bottom line is you need a clearer diagnosis. A well-qualified therapist should be able to help you with that, but of course do see your doctor first.

Please keep us posted--hoping you'll soon have good answers you can trust.

Gentle hugs,
Binney

LymphActivist

Rubiayat:

Call your therapist's office and find out what are the letters after her name? Does she show CLT or CLT-LANA? That is the only way to tell whether she has had a full training in lymphedema management. PT, OTR, PTA, OTA are not sufficient.

Does your PT have a treatment plan? If so, how will progress be monitored and how will achievement of treatment goals be determined?

Call your physicians' offices and request your medical records with a record of what the basis is of the physician's determination that you did not have lymphedema. Were any tests or imaging performed?

You have to determine the competence of your medical providers before you take any action.

Rubiayat

Thank you everyone! This is still new to me and I've heard so many different things from different doctors/nurses/therapists. As usual, the best information and resources I've found are from you lovely ladies on BC.org!

beatrice00

My occupational therapist and her strength training expercises have loosened the side muscles on one breast and the implant is starting to move to the armpit. Now I need a revision surgery to tighten the muscle and hold the implant in the pocket. Tell her not to be so rough with the stretching and she'll be more cautious. FYI you can ask her to give you silicone scar strips and a little massager for your scars. They always have those around and they useful to desensitize and minimize our scars. 

Rubiayat

Thanks for the tip Beatrice! She just mentioned the silicone strips at my appointment yesterday and I remember reading about them on this site months ago. I have large area of scar tissue in my thigh where the muscle was removed for my flap, so I'm going to start using the silicone strips asap. 

I'm sorry to hear you have to have another surgery. Is there no way to tighten the muscle through strengthening it?

vlnrph

With flap reconstruction, fat necrosis can occur (a small area of transplanted tissue dies and becomes firm). I have a patch along my side that has been stable but interferes a little with physical exam. It has also been noted on the MRIs I've had.

I used silicone strips on my port & abdominal scars that helped reduce their appearance - helpful for those of us with fair skin!

Rubiayat

Good to know vlnrph! I've started using the silicon strips and I am hopeful they will help on my thigh scar. It is quite large and starting to become raised in some areas.

I haven't seen my PS again yet, but given my description he thinks the lump on my side is fat necrosis. It is large and hurts. I plan on having it removed in my next procedure. Have you contemplated having your patch of fat necrosis removed?