Hi there,

Adding onto this - I am seeing a physical therapist trained in head and neck lymphedema (following permission/consultation with my radiology and surgical teams) while undergoing radiation. While I cannot use compressions on my face at the moment, I am doing the massages. I've found it really useful to have the conversation about lymphedema early. I have still swollen up a .5 cm more from radiation (in addition to MANY centimeters from surgery), but the massages are helping and I already have a strategy in place for when radiation is over There is not alot we can control and there is so much that cancer has taken away. In my case, cancer also took my entire tongue, my hair, and my job. For me, having some marginal control over the appearance my face and neck makes me feel more comfortable.

That said, I did ask my radiology and surgical teams first. And I am working with a PT who is trained and experienced in head and neck lymphedema. And I check in with my radiology team about everything that my PT and I are doing. And I maybe a rather particular case because I had several lymph nodes removed and the surgical scarring from my neck is blocking fluid - i.e. this is definitely lymphedema, not regular swelling.

The takeaway is that you can tackle lymphedema during treatment but that it should be done in consultation with your team and you should only work with someone who is experienced with head and neck lymphedema. I've learned that finding someone with that experience is not a given. You will have to aggressively search.