Comments on: Lymphedema, what’s funny about that?

By: Avril

Avril — Tue, 22 Sep 2009 11:58:52 +0000

Hi , This is Avril. My grand mother was suffered from lymphedema. I know how a person suffered from the lymphedema feels. After a long search on the treatment on lymphedema and swelling in the body, I found a book which is written by Peter Hodge. The book is based on his experience and 6 years of research on the lymphedema and its treatment. I make you sure that you will be benefit by this book. Go through the web-link lymphedema advice to get a proper treatment for the lymphedema. Thanks and regards, Avril

By: Sylvia Foley

Sylvia Foley — Tue, 07 Jul 2009 18:35:48 +0000

Hi Dan — what a great post, although the cluelessness of the docs you quote is hugely disturbing. I’m a senior editor over at the American Journal of Nursing, and I just edited a 2-part article about post-breast cancer lymphedema. The lead author, Mei Fu, is research consultant at one of the sites you mention, Step Up-Speak Out, as well as an assistant professor at NYU’s College of Nursing. In Part 1 the authors talk about how breast cancer survivors are at lifelong risk for developing lymphedema, which has been called “one of the most dreaded sequelae” of breast cancer treatment – hardly a fabrication! — and in Part 2 they talk about how to reduce one’s risk and manage the condition if one develops it. They emphasize that the situation’s not hopeless, but working with clinicians who are knowledgeable about lymphedema is essential.

Here’s a link to Part 1 of the article, which is free online: http://bit.ly/176BtI. (Open the PDF for the cleanest read.) I also blogged for AJN’s Off the Charts in a piece that focuses on bloggers who write about living with lymphedema: http://bit.ly/LRgox.

Thanks again for helping to raise awareness about this issue. I’m new to your blog but I’ll be coming back. . . good stuff.

Sylvia

By: DanBrantley

DanBrantley — Thu, 14 May 2009 15:56:52 +0000

Wendy,
What do you say to a woman that is the equivalent of “You Da Man!”
Great job organizing this year’s event. Everyone else put May 1, 2010 on your calendar to be in Washington, DC for the Butterfly Brunch.

Gea,
I’m glad you found knowledgable professionals to work with. And as you illustrate, it is still vital to ask for second opinions and be your own advocate. best wishes. Stay Small!

By: Gea Popp

Gea Popp — Thu, 14 May 2009 15:14:14 +0000

I developed lymphedema four months after surgery, (at which time I had 21 nodes removed) after a plane flight. I had been told nothing about the possibilities of developing lymphedema, didn’t know what it was, and wondered why my hand was swollen after the flight.
Fortunately my surgeon was aware of a new program for lymphdema patients, and I was referred to a wonderful therapist, Sarah Stolker, who has since taught many the technics of Lymphedema massage & bandaging, and become a great friend to all suffering from this condition.
My primary physician, at first refused to ok a referral to this therapist, telling me, and I quote,” There is no cure for lymphedema. If you want to waste your time on gadgets, and treatments, I’ll recommend several treatments, but if you’re embarrased by your arm, WEAR A LONG SLEEVED SHIRT!”
It was Sarah that convinced her that the massage would help.
I never went back to that doctor.
After I changed doctors, I developed an infection in my arm which turns your arm beet red. I called my new doctor to tell him my condition, and he recommended that I put ice on it. I called my oncologist and she had me come in and immediately prescribed an antibiotic, telling me that non-treatment could eventually lead to death.
I didn’t intend to write a dissertation, but wanted to emphasize the ignorance and lack of interest by some physicians.
I appreciate your humor. Humor and prayer keeps me going.
Thanks for your interest.

By: Wendy Sahli

Wendy Sahli — Thu, 14 May 2009 14:05:16 +0000

Awesome job at the brunch Dan! Thanks for posting the write-up to share with others who weren’t able to attend.