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Research
I recently spoke for the Butterfly Brunch, a benefit for lymphedema and lymphatic research. Jake Miles – The Lymphedema Documentary Project, and Wendy Chaite, Founder & President of the Lymphatic Research Foundation were also on the program.
Lymphedema is the Rodney Dangerfield of diseases. It gets no respect.
In December, when Wendy Sahli asked me to participate, I was clueless about the condition, but it affects, by some estimates 40% of the women who have breast cancer surgery that involves the lymph system. Any trauma to the lymph system has the potential to develop into lymphedema. There are others who develop it spontaneously, with no trauma to the lymph nodes.
The lymph system covers your entire body, similar to the blood system, except instead of a heart, muscle activity moves the fluid, eventually to the lymph nodes, where it drains. When there is a problem with the lymph nodes, the fluid can’t drain and the result is chronic swelling. Not usually fatal, but it certainly affects quality of life. When your left leg is twice the size of your right leg… it’s tough to find jeans that fit.
But if it is so prevalent, then why haven’t we heard anything about it?
Some doctors don’t believe it exists.
One oncologist told a breast cancers survivor, who had been diagnosed with lymphedema years earlier, that he had “never had a patient develop lymphedema after surgery.”
One doctor suggested to a woman who had lypmhedema in her right leg, that she was “losing her girlish figure.” Which may have actually been more precise than the next doctor who told her “I see nothing wrong with your right leg, but your left leg is atrophied.”
Evidently I am not the only clueless one out there.
“No respect! No respect at all, I tell ya!
How big does a leg have to get before someone pays attention around here!”
One woman suggested, that if more men developed the condition after prostate surgery that invloved the lymph nodes in the groin area, there would be much more attention paid to it. Of course, we decided, that would depend upon which part swelled to twice its normal size after surgery.
A number of people helped me do research for the program and I appreciate it very much.
Pam Waterman, has a publishing and writing business called The Discovery Box – whose tagline is “inventive ideas for food, fun and family” her recent books are specialty cookbooks for people in braces. www.BracesCookbook.com and her blog www.SilverSmileSurvival.blogspot.com
Chlorinda Cardillo, Shelley Musselman, Bonnie Pike (who inspired the post title), and Naava Platka, all were kind enough to talk with me about their experiences.
And Linda Malmberg, who runs a Lymphedema Support Group in St. Louis, Missouri, pointed me to these websites for more information:
StepUp-SpeakOut a site recently created by a group of Lymphedema patients for the purpose of providing a “one stop shop” that patients can refer to for their resource needs.
NLN – National Lymphedema Network. An organization which provides research articles and ongoing resources for both patients and lymphedema therapists.
Article on “Understanding the Lymphatic System“ provided by the Lymphnotes Forum
BreastCancer.Org Lymphedema Forum where patients with lymphedema can ask questions and discuss their issues living with lymphedema.
So to the “Swollen Chosen” and all you “Swell Gals” out there.
Thank You! Stay Small!
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on May 14th, 2009 at 1:12 am
Unfortunately, I’ve had breast cancer and had seven lymph nodes removed.
And I’ve suffered from a slight case of lymphedema.
Thankfully, ALL of my doctors and nurses have acknowledged it and have always been helpful and willing to deal with it.
I can’t imagine any doctor saying some of things you wrote! How sad.
Makes me feel that much more grateful for my team of docs!
*smile*
on May 14th, 2009 at 3:34 am
You’ve hit the nail on the head again!
on May 14th, 2009 at 7:40 am
Quirky (can I call you Quirky? or do you prefer Ms. Loon?)
You are one of the lucky ones. Perhaps it was just my sample of the lymphedema universe. But over and over again I heard similar stories about the ignorance of the medical community concerning this condition. And the one thing everyone I spoke with asked for was more awareness about the disease.
The post was a little more serious than I intended, and nearly all the women I spoke with had a great attitude about what life had dealt them. They wouldn’t call themselves the “Swell Gals” if they didn’t have a sense of humor!
I trust your lymphedema is under control, and I see you are a member of Humor Bloggers Dot Com – so I know you have a sense of humor!
Thanks for commenting!
Avril, one of my Australian buddies! Thanks for staying up late (or getting up early) to comment.
If the drought continues any longer “down under,” having lymphedema and retaining fluids may be a blessing in disguise!
on May 14th, 2009 at 9:05 am
Awesome job at the brunch Dan! Thanks for posting the write-up to share with others who weren’t able to attend.
on May 14th, 2009 at 10:14 am
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.
on May 14th, 2009 at 10:56 am
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!
on Jul 7th, 2009 at 1:35 pm
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
on Sep 22nd, 2009 at 6:58 am
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