Connect with others who understand.

Sign up Log in
Resources
About MyBCTeam
Powered By
Real members of MyBCTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Does Anyone Have Truncal Lymphedemia.

A MyBCTeam Member asked a question 💭
Avon Lake, OH

I had some thickening on the sides of my breasts. My ONC looked at it and said it was Lymphedemia but since it wasn't in my arms I didn't need to do anything. Later while I was in chemo my Clinical Trial Nurse came in and said I should speak to the Breast Health Nurse and the ONC really did not know a lot about Lymphedemia. So she got me a consult to a Lymphedemia PT Specialist next week. In the meantime I have been looking at You Tube videos on self massage. I also found some compression… read more

October 11, 2016
•
View reactions
A MyBCTeam Member

I agree with Zgfighter and thru my personal experience. Had node dissection in right arm during mastectomy. Developed lymphodemia in right arm...breast doctor sent me to Certified Lymphodemia Specialist with PT. I went every day for theraputic drainage massage and was wrapped with compression bandages for a month. PT helped with range of movement. The therapist was able to reduce the size of my upper arm and forearm and some of my hand. She was able to break down the fibrotic tissue in my upper arm that compromised flow of lymph fluid in my right side. I was fitted for a glove and sleeve and have to wear a garment at night as well. It is a lifelong commitment and does not ever go away but can be managed by following specific caveats. After the therapist has gotten swelling to a safer level then she suggested following therapy of bona fide therapist on you tube once or twice a day. Those you tube videos are for maintenance purposes only but not to actually treat.
It seems that Lymphomatic Drainage specialists are not in great supply and seem not given as much credit and attention as they should, especially breast cancer patients. Although any incisions that affect the path of lymph fluid can cause lymphodemia. so there goes my idea of a tummy tuck lol

July 9, 2023
A MyBCTeam Member

You can but it's less likely. The reason for higher rates of lymphedema is usually on the side where nodes were removed and also the rate goes up more if you also get radiation on that side. I get build up on the outside of mine too. Mostly on the radiated side. Definitely see a PT lymphedima person to teach you the different exercises and massages. I personally find anything constricting around my breast to make matters worse and then I actually start to get swelling in my left arm. It's good to do all this sooner than later. Because I kept working I just couldn't fit in PT on top of everything else and didn't start doing PT until almost a year post surgery. It would have been better to have started earlier as I still have to be causious about swelling. I have a compression sleeve for flying and exercise. It's to prevent lymphedima. You always want to stay on top of it because once you are diagnosed with it there isn't a cute so do all the preventative things they teach you.

October 13, 2016
A MyBCTeam Member

@A MyBCTeam Member I'm the exact same way. And now that the expanders are out I also get phantom itches under the implant. Talk about maddening!

October 21, 2016
A MyBCTeam Member

I strongly encourage you to wait until you see your PT before you do any massage. I realize the video is from a hospital, but its intent is for people who have already seen a PT and have been shown how to properly do this massage.

Lymph fluid is tricky,and I don't want you push it to the wrong area.

I know you want to "fix" this, but please don't rush for a fix.

October 11, 2016
A MyBCTeam Member

@A MyBCTeam Member. The self massage has to be done in steps. It ensures the fluid is moved through the lymph system appropriately. Please wait until you see a pt to ensure you are doing it correctly. Xxxooo Leanne

October 11, 2016

Related content

View All

Truncal Lymphodema

A MyBCTeam Member asked a question 💭
Hendersonville, TN

What's The Deal With Lymphedema?

A MyBCTeam Member asked a question 💭
Austin, TX

Compression Massaging Arms Sleeves Lymphedema Support

A MyBCTeam Member asked a question 💭
Clinton, MD
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data Policy and Privacy policies.Your privacy is our priority Lock Icon
Already a Member? Log in