Lymphedema or something else?
 

Hi!

I have a question about a new issue I'm having and I hope someone can shed some light on it for me. I'm 11 years away from bilateral mastectomies during which they removed 3 lymph nodes from each side (cancer was on the right side). In 2012, I was diagnosed with a new breast cancer. After it was removed, I had chemo and radiation (to the right side). Radiation ended in July 2013. Lately, I've been having pain when I extend my right arm out in certain directions. And I just noticed today that when I feel the tender spot that's in the middle of my bicep from which the pain radiates, it feels like there are some lumpy "strings" in my bicep. I also noticed that further down my bicep toward the inside of my elbow, my skin looks like it's a little puckery. When I compress that bicep with my left hand and extend it, it doesn't hurt.

Does anyone know if this is the start of lymphedema? As much as I don't want to deal with that, I'd rather have the problem be treatment-related than cancer-related. Thank you so much for any input you can give me!

Susan

Re: Lymphedema or something else?
 

I'd go see a lymphedema specialist to get the correct diagnosis. I had radiation on my right side and they zapped my lymph nodes, too. Also had radiation on my left side without lymph node targeting.

I did see a specialist, was measured and fitted with a sleeve. I only wear it when I fly but never have my blood drawn or blood pressure taken on my right side.

Janis

Re: Lymphedema or something else?
 

Could it be axilla web syndrome? (Cording?)

Re: Lymphedema or something else?
 

Thanks, Leah. I'll look that up.

Re: Lymphedema or something else?
 

Janis,

I'm seeing my radiation onc for a check-up on Monday. Hopefully she can diagnose. I don't have much confidence that my hospital has a lymphedema specialist. Thanks!

Susan

Re: Lymphedema or something else?
 

Wow, Leah, I looked up axillary web syndrome and it fits what I'm seeing and feeling perfectly. I'll ask my rad onc when I see her next week about it. You are awesome! Thanks!

Susan

Re: Lymphedema or something else?
 

Very welcome Susan. I don't know what the treatment is. Best of luck!

Re: Lymphedema or something else?
 

Hi. I developed lymphedema from a blood clot. Fortunately that cause has a great prognosis for correction. In fact, my arm is back to normal size but I have to keep wearing the compression garments for a while longer to keep the swelling in check. My specialist is an Occupational Therapist with specialized training. She got interested in the specialization because she had lymphedema after BC. Recently she commented that she was afraid I was developing cording so she has used both massage and a hand-held laser to treat that area. as well as areas of scar tissue. I don't feel any pain from the laser but the massaging is certainly uncomfortable and leaves me tender to touch for several days. On the other hand, I have much greater range of motion than I did. I think and have read on this site that it is important that you get someone who is trained in this specialty. As many have commented, if you aren't satisfied with your medical team then it is time to check out others. I switched and I think it saved my life.

Re: Lymphedema or something else?
 

Thanks, Pat94. I'm hoping I don't get a perplexed look from my rad onc. She's done that enough times that I've thought about asking to see her diploma. You're right - I think I'll have to be proactive with her and ask for a specialist.