radiation fibrosis and lymphedema

[Clematis1017]

Hello! On January 27th I completed 4 weeks of whole breast radiation plus 4 weeks of a radiation boost to the site of my most recent lumpectomy. Now three months later I have developed pockets of lymphedema under my arm, and also fibrosis (scar tissue) from the radiation. It is very painful. I am seeing a physical therapist and of course my surgeon and radiation oncologist but I wondered if anyone had a recommendation for a specific brand of compression tank that you have personally used and liked?

Secondly, for those of you who were diagnosed and treated pre-menopause, only with radiation and surgery, not chemo or tamoxifen, did you experience substantial period changes after radiation? I have been having huge clots and heavy bleeding, which they are telling me is related to my treatment. But I’m wondering how common it is and how long it took you to normalize if this happened to you? Thank you!

[mathematics]

I developed lymphedema actually during the radiotherapy treatment though it was all my left arm that swelled up right down to my hand I was really upset and fed up as I had just gone through 6 sessions of Chemo and was dealing with the side effects of that. I was referred more or less straight away to a lymphedema clinic who measured my arm and gave me the compression tanks however I found that it was exercise that helped to control it and doing the massage. I even paid to go to someone who massaged my arm, she was trained and worked with cancer patients, and it really worked my arm went down considerably. I also went swimming regularly and followed the downloads you can get on the internet that teach you to massage the areas that have lymphedema and it worked slowly but it did, I was provided these by the lymphedema clinic. Hope you find a solution and help soon all the best as it is early days with you yet as you have just had the operation and radiation. I cannot help you with your periods as my periods stopped during chemo and that was that early menopause. As far as the scar tissue goes again it is massage that helped me with that and rubbing in moisturizer the cheap E45 type everyday that worked , I can still see my scar but it is soft and there is no tissue again take care.

[Clematis1017 in reply to mathematics]

thank you! Do you know the brand or brands of compression tanks you used? I am managing all the other things—MLD, exercise and breathing and stretching but I need a tank. I have tried a few unsuccessfully.

[mathematics in reply to Clematis1017]

The brand was sigvaris advance with mitten 20-25mm-Hg, I used to wear it as directed during the day and take it off at night, however since my lymphedema has improved I do not wear them. The Lymphoedema clinic would supply me with them, hope that helps.

[bikebabe]

hiya - I had all my lymph nodes taken out two years ago (19/34 were positive). I have mild lymphoedema and echo mathematics experience in that daily stretch and lymph massage technique seem to work best. I wear a sleeve when I’m going to be doing something that might aggravate it. I haven’t found any specific garment that deals with underarm and side of mastectomy that feels swollen. Just exercise and manual drain drainage. So will be interested to see what others recommend.

[BklynCatwoman]

I'm very sorry to hear about this. My lymphedema suddenly developed in my left arm about 1.5 years after treatment. I was prescribed a sequential circulator pump by BioCompressions Systems Inc. I've found great self-massage vids on YouTube, which also help. youtube.com/@CancerRehabPT & youtube.com/watch?v=Up_s(Not working as expected?). I also wear a Lymphediva compression sleeve during the day and a heavy-duty compression garment at night. But honestly, with all of this effort, plus going to a PT, I see very little difference in my arm. But an area where the fluid had thickened is much better. Yoga stretches also help. Progress is very slow but it will come.

[Clematis1017 in reply to BklynCatwoman]

thank you!