Lymphedema and Dr. Oz: Let’s educate celebrities

  • 30 May 2012

In the U.S. only a hermit would ask “Who’s Dr. Oz?”

Now a TV superstar, Dr. Oz  achieved his fame from the Oprah Show, where he first appeared in 2004. Five short years later Winfrey’s Harpo Productions and Sony Pictures launched The Dr. Oz Show, a daily television program focusing on medical issues and personal health. To say the program has taken off wildly, especially among women, is an understatement. What lady doesn’t have a secret crush on this smiling, wise man who seems to know everything?

Well, surprise, surprise! He doesn’t know everything. A recent episode of the Dr. Oz Show featured a question from the audience about lymphedema. As a lymphedema patient-advocate I know that Dr. Oz’s answer provided incomplete advice regarding both clinical examination and treatment.

Rather than simply recommend wearing compression garments, Dr. Oz should have conveyed to this woman, who probably had primary lymphedema of the leg, that the gold standard treatment for lymphedema is complete decongestive therapy (CDT). The National Lymphedema Network still provides the most reliable information on the subject of treatment for this condition. But many other resources exist, including such trusted medical institutions as the Mayo Clinic and Stanford University Medical Center.

Dr. Oz’s audience should also understand that it’s not a good thing when lymphedema ceases to pit. It means the swelling has become at least partially irreversible.

My swollen lymphedemous arm, a result of removing lymph nodes to treat breast cancer, no longer pits because the fluid has collected in the arm and can’t be removed completely. I do don a compression garment to control my condition, but first I needed to undergo CDT at a clinic, including manual lymph drainage and daily bandaging. As part of CDT, the patient is taught how to self-manage the edema on a daily basis. In addition to wearing a day sleeve, I adhere to the recommended practices: use of a night garment, meticulous skin care to avoid infections and gentle stretching exercises to keep scars from blocking fluid passage.

I, for one, would appreciate an educational segment on the Dr. Oz Show about lymphedema that would “arm” patients with the information necessary to ask their doctors if they should be referred to a lymphedema clinic for treatment.

If you agree, it would be wonderful if you would join me in e-mailing Dr. Oz’s assistant, Susan Wagner (susan@zoco.com).  It takes only a few moments to relate briefly your experience with lymphedema and request that the subject be addressed with some expert information. Perhaps if the powers-that-be receive enough messages from this e-mail campaign, they’ll realize that Dr. Oz should provide another, more in-depth and well-informed show on lymphedema.

Thanks! Together we can make a difference!

  • http://www.thebigcandme.blogspot.com/ Renn @ The Big C and Me

    Done! I just sent Susan an email. Even though I do not have lymphedema, I am very scared of developing it. And that’s what I told her. Education is key. Thanks for being such a great advocate! Fingers crossed that Dr. Oz hears us!
    ;-)

  • http://janhasak.com jhasak

    Renn, you really act quickly! I’m so impressed. Thank you for writing Susan from a different perspective. I do hope that Dr. Oz will hear our collective voices and step up to the plate. I’m so glad you don’t have lymphedema, and I hope you never do develop it. It’s no picnic. xx

  • http://www.nancyspoint.com Nancy’s Point

    Jan,
    Thank you for being such a diligent advocate. Dr. Oz seems to be a kind and knowledgeable doctor, but of course, he doesn’t know everything. If he gave inaccurate or incomplete information, that needs to be addressed. A guest expert in lymphedema seems like a great idea, or at least a follow-up with updated information. I will send the email.

  • http://janhasak.com jhasak

    Thank you for sending the email, Nancy. I do hope that a guest expert or follow-up show will take place to clear up the misconceptions. I’d hate to see so many viewers being misled. Especially when we do know so much about lymphedema treatment these days. xx

  • http://accidentalamazon.com/ Kathi

    I will be sending my email shortly. Personally, Dr. Oz, and others of his ilk, drives me nuts. Breast cancer is not immune to the Cult of Celebrity, but ultimately, I think it can do more harm than good when misinformation is put out there in such a public way. I so appreciate uour call to arms (pun intended!). Those of us who are the ‘real’ experts need to keep educating the celebs, it seems. Shame on them for not educating themselves.

  • http://janhasak.com jhasak

    I’m glad you agree with me, Kathi, that Dr. Oz and other celebrities are irksome. Unfortunately, many people worship the Cult of Celebrity (nice phrase) and hang on its every word. My call to arms was also an intended pun; I’m glad you caught that! Thanks for sending an email out. Maybe our collective voices will make a difference. xx

  • Lee Sellers

    Thank you for being an advocate! My wife Bridget courageously throat cancer starting August 2011. Now Lymphedema has started in the last 3 to 4 weeks. I am shocked that we were not things that these never a warning. There are so many things that cancer patients need help on after treatment. This is one that we can impact. I sent the e-mail and will continue to work on this for my wife and others. Again, thank you!

  • http://janhasak.com jhasak

    I am so sorry first that your wife was diagnosed with throat cancer and second that she developed lymphedema. It truly is shocking how in the twenty-first century doctors still don’t warn their patients of this devastating diagnosis. And then when they get it, the doctors don’t always give the right treatment advice. Thank you, Lee, for sending the e-mail to the staff at Dr. Oz. Education is key. Together we CAN make a difference.

  • Betty Hall

    I am a breast cancer survivor. When I go to my doctors and try to get help with my lymphoma there isn’t much they can tell me just put my arm up four times a day and wear my sleeve. Nothing else. I really would like to know is there help where can I fine out. When I tell people I have lymphedema then I have to tell them it is from having breast cancer and having twenty eight nodes remove. Some will kind of know others just say oh you are still alive. So if I can find help and get the doctors to learn more about lymphedema this would be wonderful. Thank you

  • http://janhasak.com jhasak

    Dear Betty, you can definitely get help for your lymphedema. First, you should contact the National Lymphedema Network at 1-800-541-3259 (www.lymphnet.org). Ask them to refer you to a LANA-certified lymphedema therapist in your community or somwwhere nearby, or use their online tool to find a therapist. The first phase of treatment (called complete decongestive therapy) involves in-person treatment by the therapist to get the swelling down. Another good website and resource for lymphedema is the organization “Step Up Speak Out” (www.stepup-speakout.org). I have additional lymphedema resources at my website at http://www.janhasak.com/resources. I hope this information helps you. Please let me know if I can help in any other way. No one should get the reaction from doctors and others that you are getting for a treatable condition. Jan

  • Erika Johnson

    I also suffer from lymphedema and would like more information on the topic.

  • http://janhasak.com jhasak

    Erika, please see my comment in reply to Betty on this blog. I list some resources there that should be helpful regarding getting help for lymphedema. Best to you. Jan

  • Stephanie

    I will email.

    He needs to do a whole show! I see people everyday with the condition. I don’t know how to approach them. I am so afraid of hurting someone’s feelings but I know one day I will get past it.
    Whether the Lymphedema is primary or secondary, the prevalence seems to be rising but the education does not. Many of us that love someone with it or have it ourselves know substantially more than most physicians.

  • http://janhasak.com jhasak

    He absolutely should do an entire show on this condition. If you see someone wearing a compression sleeve or having asymmetric limbs, you should probably not say anything unless the person broaches the subject first. Thanks for your comment.

  • Halona Luna

    Thank you, sending email right now. I have had “Lymphaedema”/ Lipodema for approximately 10 yrs. It showed up after my youngest was born. Took two yrs before I could diagnosed but only because I came across one of my employer’s flyers regarding Lymphaedema (Physical Therapy). I have had many health issues since & primary dr responses “lose weight?”. After the final straw last September, being terminated, My depression is closing in on me. Any suggestions?? I live in Fort Wayne, Indiana.

  • http://janhasak.com jhasak

    I am so sorry that you had to wait so long before getting diagnosed for your lymphedema. There is still so little information on the subject in the U.S. Have you been treated for your lymphedema in the proper way? The gold standard for treatment is complete decongestive therapy (CDT). Do you wear a compression sleeve daily to keep the swelling under control? If you haven’t had CDT, I suggest you find another doctor who will give you a referral to a lymphedema clinic or certified therapist in your area so you can get CDT as soon as possible. You can get lots of information and support on lymphedema from stepup-speakout.org. I list other online resources for support on my website at http://www.janhasak.com. As to your depression, your primary dr. or another one can let you know if your local hospital or community has support groups. I think it would do a world of good for you to find a support group, either in your area or online, for lymphedema. And if needed, your doctor can provide a prescription for an anti-depression drug. I do hope you get the help you so much deserve. Best wishes, Jan

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