Does this sound at all like Lymphedema?

I apologize in advance that this is long and maybe vague, but I am at my wits end to figure out what is going on.

First, the background. I had bilateral mastectomy 3 years ago today (cancer was only on one side) with only sentinel node removed in prior surgery and radiation after chemo and mastectomy.

Was surprised to be left with dog ears. Was told to massage my scar after surgery, but that was before radiation and the massage promptly stopped. Over the years, I've talked to to Onco about the feeling there was an orange under my arm on the cancer side and was told to quit lifting so much. As far as checking for lymphedema, both arms were measured before and shortly after surgery and that is the extent of that.

Okay, so a couple of years of under-using my arms and the resulting chest muscle spasms and tightness when I do use my arms for even light weights, mild swimming, and the severe pulling forward of my shoulders because of the severe adhesions on my cancer side and mild adhesions on the other side has left me in a mess.

I was diagnosed with "frozen shoulder" on my NON-cancer side last fall after a PET scan cleared me of the shoulder and arm pain being from cancer. PT with pulling and weights sent me into a storm of chest spasms. Surgeon has left but his office told me the scar needs to be massaged. I found a place that does this, that also happens to do lymphedema therapy. Something happened during this time period, possibly blood pressure or tourniquet for blood draw or PT at the first place, caused my non-cancer/frozen shoulder arm to swell and feel like I constantly had a blood pressure cuff on me. It lasted for a few days and was eventually relieved by elevation, ice and compression. The therapist doing the adhesion massage took over working on the shoulder so he could do it more manually and not spasm the chest muscles and he started MLD on both sides. The thing is...he seems skeptical the swelling/pain from that arm is from lympedema since there was no radiation on that side and no lymph nodes removed. It did measure larger, but is my dominant arm. The thing is, the swelling comes on very, very quickly and I have not seen him when it was so swollen. He did tell me to treat it as though it were lymphedema and not to get any more blood draws/IVs or blood pressure taken there.

It has happened again, twice, and the last two times I also felt swelling and pressure in my upper back (and in that stinkin' dog ear) on that side and my fingers felt cold. I am finally scheduled to get an MRI of my shoulder since my internal/external rotation is not improving at all, but the ortho doc isn't positive we will be able to see much since my port is in place.

Also, the ortho doc that ordered the MRI says the swelling and cold fingers is vascular and would not show up on MRI and he would not be able to help me with it. Does it sound more vascular than Lymphedema? My PCP is fed up with referring me and I don't think he will refer me to someone else, so I feel a bit helpless.

So, I've been off of PT for a week waiting to see docs and get MRI appt (scheduled Tuesday), and the shoulder has gotten better from rest. But today, I used the computer quite a bit. Shoulder is not hurting really, but my shoulder blade  and (and dog ear to lesser degree) feels like 5 lbs of pressure are under my skin and it is painful. It feels like constant pressure.

Any ideas are greatly appreciated.



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