Lymphedema - new support group: Let's connect

You can look up “Dry Skin Brushing” and “Manual Lymph Drainage” on YouTube. There are many videos that show how to drain the fluids off your body. Good luck.

My favorite source other than my own Mayo OTs is http://www.cancerrehabpt.com. She has great Instagram and YouTube videos as well.

I already follow some of the support groups. I was just diagnosed yesterday with lymphedema in my left foot and leg. I am not 100 percent sure yet, but they feel it is caused by venous insufficiency. They will be scheduling some ablation procedures. It really does not matter because the treatment is the same for now. No cure, so I am interested in treatment options and success outcome. How do I go about adding this discussion to my current support groups on this forum.

I am so happy to see this conversation pop up as I am awaiting an opening for a lymphedema evaluation for one leg.. This is from a full hysterectomy and a second lymph node surgery three years ago for endometrial cancer. The suggestion of a lymphedema support group for lower limbs is a great idea. Thank you kit75 for this suggestion and to all others who shared informative sites for related information.

Wanted to share a BBC article on lymphedema.

Lymphoedema: The 'hidden' cancer side-effect no one talks about
https://www.bbc.com/future/article/20241216-lymphoedema-the-hidden-pandemic-affecting-250-million
Patients who beat cancer can be left with an incurable, chronic and painful condition. Sufferers and doctors alike are fighting to bring this hidden condition to light.

Thank you for sharing this article. Sadly, it seems that once we are finished with our cancer treatments we are considered cured and then left on our own to manage treatment related side effects. The constant physical reminders of cancer make it that much harder to live normal lives, though that is what others expect of us. Here’s to personal advocacy and the support from others in the same boat.

This radiation lymphedema certainly has done a number one me and I'm in full on struggle mode. My skin around my neck and chest is so tight I have a hard time swallowing. I have been trying everything I can think of to feel better. Lymphatic drainage, physical therapy, speech therapy and nothing really seems to help much. If anyone out there has other suggestions please feel free to share with me. It would be much appreciated. I had nasalpharangeal cancer in 2021 and tongue cancer in 2024 so I had lots of radiation between those two cancers.

I see my OT for Myofascial Release Massage. It works great for me. I regain a lot of movement in my neck, my speech and swallowing improves. Do some research and see if you can find an OT or PT at your clinic. My therapy was prescribed by my surgeon and is paid by insurance.

I would also like to see a support group for lymphedema, I have it in both legs from endometrial cancer surgery.

Is there a monitor from connect.mayoclinic reading this thread? If so, can you let us know if there is a connect group for lymphedema that is not breast treatment related? If not, can one be started? Thank you!