Who is my lymphedema health care provider?

MeredithJane - For me it was my surgeon and it continues to be that office that helps me with my lymphedema. I've never discussed it with my primary care doctor, and I found that the oncology place couldn't care less. The radiologist I saw did mention that she could be a referral source for a number of things, but I don't see them really anymore.

I had mentioned my arm swelling more than once to staff at the oncologist's office and I would show them how one arm was swollen compared to the other. The nurses there would just say, "Oh yeah, it does look kind of swollen", and that was the end of that. It didn't seem to mean anything to them one way or the other. My surgeon on the other hand, walked into the exam room one day and within two seconds said, "Looks like you've got some lymphedema going on in that arm!" He immediately said he was going to refer me to a specialist and talked about getting it while it wasn't too bad and before it gets worse. He took measurements and wrote referral and more. He continued to monitor the situation when I would see him for follow-ups. He retired and I now see the woman who has been his clinic partner for years and I told her how the oncologist's office had little to no interest in the matter, and she said, "Well we sure do here!" and she too has written referrals for me and talked to me about my sleeve, etc. when I see her for follow-ups. If I have any further problems, there is no question that it is the surgeon's office that I would contact.

I have read on here however, that for some it is the opposite and they have found their surgeons disinterested and their oncologists very concerned. It seems to really vary from person to person and place to place.

I would probably go through the surgeon!

Any of my doctors could write the order for pt. Both my radiation oncologist and my medical oncologist have done so.

nayabean - my surgeon originally sent me to PT for lymphedema, and reason for that is two-fold - it is generally considered to be a surgical complication (or could be a radiation complication coupled with SNB or additional node surgery) and also because I was still being seen fairly often by the BS since my LE occurred so soon after surgery. I did not have radiation, so had no RO. That said, since lymphedema is a lifelong condition for most, albeit well controlled for some, I eventually stopped seeing my BS because there was no further need for any post-op checks and I had bi-lateral mastectomy so no need for imaging ordered by him, but did continue to see my MO for periodic general monitoring. So, now it is the oncologist who manages my referrals for any continued lymphedema needs. This consists of writing prescriptions for sleeves/gauntlets and inquiring about how I am doing. All measurements, therapy, supplies are handled by the lymphedema specialists - the PT and the durable medical equipment companies that provide my pump and garments. I was worked up by a microvascular plastic surgeon for lymphedema surgery to reconnect channels to help the lymph flow out of my arm, but so far I have declined that surgery even though I am a candidate. I am not ready to attempt surgery because my arm swelling is well controlled and I have not developed any fibrous aspect to my arm. I did the workup at the NCI center I go to periodically for decongestive massage therapy of my LE arm, and it included both physical exams and imaging tests. I do not have any continuing need for massage since I have a pump, but have had a few flares over the years that have required a more intensive approach for a limited period of time.