Lymphedema awareness

Cassie · Guest

Oh, boy, am I ever glad to have even a small part of the medical community by the ear! Here's the gripe: doctors know next to nothing about lymphedema--expecially breast lymphedema--and ABSOLUTELY nothing about what this condition does to the people who develop it. They are negligent about alerting their patients to the possibilities and to the steps they need to take to prevent it; they are slow to diagnose it; they treat it as a minor side effect instead of the devastating, life-long, and often painful diagnosis that it is; they are unfamiliar with the treatment modalities, and they know zip about where to steer patients for the best and most effective treatment.

And while I'm on the subject, the lymphedema therapists themselves seem to be at odds with each other over whose training program is the best and, though there are relatively few of them in any community, they fail to unite to educate the medical community--not to mention the patients--about the availability and importance of their treatment programs. In a way, it's no wonder the medical community doesn't take those of us with lymphedema seriously, since its practitioners are so busy one-upping each other. I wish you guys would get your act together on this and not leave all the burden on those of us who are suffering from it.

Thanks for the platform.
Cassie

leo · Owner Joined: 23 Sep 2004 Posts: 1574

Cassie,

You are absolutely right about the lack of information about lymphedema. Being a resident at the Mayo Clinic, they have a very nice Lymphedema Clinic, with a multidisciplinary staff that is very helpful. I have used their services in the past for my patients, and I was truly impressed.

I hope there are better outcomes in the future regarding this problem, as it is even hard to predict who will be affected and to what extent.

regards,
Leo

JackieDoss · Guest

Cassie - I agree! I was just coming back here to reply to someone's post wondering what to do about the fluid building up on her arm...because I didn't see a response that explained lymphedema, even from our dear doctor friend, Leo.

It's definitely a neglected ailment. I'm so glad that I was informed about it... but I still marvel at many doctors' responses when I explain that I have lymphedema. I just want to shake them! Even people who had only 1 or 2 lymph nodes removed are at risk, and they should be told about lymphedema. Any disruption to the lymph system can cause a problem. I don't know what's so difficult to understand about that!

I mentioned to my dermatologist (I have melanoma, BTW, not breast cancer) that I wasn't sure I wanted him excising one of the freckles that I suspect is dysplastic... because I have lymphedema in that arm. He knew I had a complete resection of my axilla lymph nodes, and radiation.... but he still said "What does lymphedema have to do with that?" It took everything I had not to reply "I have two words for you -- Mo ron!"

On the other hand, not every doctor is expected to know everything. And his being a dermatologist lets him off the hook. My SURGEONS however, are another story!!!!

Okay, I'll shut up now. Smile

Except for one thing. If anyone would like to learn more about lymphedema - visit www.lymphnet.org

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Jackie ~ I didn't think 1 or 2 nodes posed any risk. I had 3 nodes removed during the sentinel node and none of my doctors (rads onc, med onc or surgeon) ever told me there was any risk of lymphedema. They did not tell me that I shouldn't have blood pressure done on that arm. Also, I did not have a port and the nurses did use that arm for sticks. Because of all this, I thought I was "safe." So now I'm finding out that I'm not? That sounds pretty negligent on the part of the doctors.

Thanks.

Hugs,

Margie

Kristen · Guest

Ok while your on the subject...I have to agree with casse about lack of being informed by the doctors. While conducting my own research I wanted to learn everything I could about it so I would not get it. However, I kept running into roadblocks because if you don't have it then nobody wants to talk to you, or they tell you not to worry about it.
So, I think the doctors should be alerting their patients to this possible side effect and if nothing else, give them information so they can do everything to prevent it from ever happening.
Ok, got that off my chest!!!
Kristen

Sharon · Guest

I guess I should feel fortunate that my oncologist doesn't reccommend further lymph node dissection since my sentinel node is already positive. He says it is a sure case for lymphedema if I have the dissection and radiation. I hope the Mayo Clinic can help educate all in this very serious side-effect. Sharon

claisy · Posted: Mon Nov 01, 2004 3:38 pm Post subject: lymphedema

Hi all....I know exactly what you are talking about when it comes to this subject. NOBODY in the medical field wants to discuss it. Thank god , I have not had any swelling and I am coming up on 4 years post surgery.

Did want to mention a site to get PINK bracelets FREE
www.lymphedema.com
or
1 800 29 EDEMA

I wear one whenever I am travelling or have to go to the doctor or in hospital for a procedure. It gets everyones attention. I had appendicitis last year and it came in very handy!!!!

Mine says: ALERT LYMPHEDEMA
No Blood Tests, Blood Pressure,
No I.V. or Injections into this Arm!

Good Luck to everyone

Paula · Guest

Hello There!

I am a 42 year old very active, healthy, post BC patient with Lympedema. I had many bad experiences with the medical cmmunity giving me lots of bad treatment and advice that didn't work - let me give you a list of what didn't work and what did work for me:

Did not work
Off the shelf (won't say brand sleeves)
They look ugly, and do nothing to reduce the size - after many frustrating expereinces and when the Lympedema nurse (who is highly educated and writes books on the subject) told me to start keeping a journal when my swelling was out of control, I decided to try something new. That was my last time working with her.

I did find somethings that did work for me:

Lymatic drainage therapy by someone trained in the Vodder method
wrapping (it is sooo much more effective than those sleves and gloves)
custom made-to-measure sleeves and gloves - mine are by Jobst
Nighttime garmet Jovipac (looks like a gigantic ovenmitt) and sleeve that goes over it.

Hope this helps - I went from a sleeve size 3 to a size 1 with these methods. Also this book I'm reading is a bit radical but seems to have some sound methods: Lympedema - Finding the Holistic Approach by Phillip J. Pollot

Good Luck![/list]

MACE1610 · Regular Joined: 27 Nov 2004 Posts: 23 Location: FLORIDA

MY CANCER DOCTORS DID MENTION LYMPHODEMA TO ME JUST A BIT. I MUST SAY THAT NOW 2 YEARS AFTER MY LUMPECTOMY I DO HAVE MILD LYMPHODEMA. THE ONE THAT DID TELL ME ABOUT IT WAS MY PRIMARY CARE DOCTORS NURSE. I HAD GONE THERE BECAUSE OF ANOTHER HEALTH PROBLEM AND WHEN SHE STARTED TO TAKE MY BLOOD PRESSURE I PUT OUT THE ARM ON THE SIDE OF THE LUMPECTOMY. BEING A GOOD NURSE SHE REMEMBER ABOUT MY LUMPECTOMY AND SAID TO ME ISN'T THAT THE SIDE OF YOUR LUMPECTOMY. WHEN I SAID YES SHE WENT ON TO EXPLAIN LYMPHODEMA TO ME AND TOLD ME RIGHT THEN TO GO AND GET A MEDICAL ALERT BRACELET AND WEAR IT ALL THE TIME. JUST A FEW MONTHS BEFORE THIS I HAD GONE IN TO HAVE A COLONOSCOPY DONE AND THEY HAD USE THE LUMPECTOMY SIDE TO PUT IN THE IV. MAYBE THAT IS WHY I HAVE THE LYMPHODEMA NOW. I WILL NEVER KNOW FOR SURE IF THAT CAUSED IT OR IF I WOULD HAVE GOTTEN IT ANYWAY. SO THANKS TO A GOOD NURSE I NOW HAVE THE BRACELET AND NEVER COMES OFF. IT HAS ALL THE INFORMATION ON IT ABOUT NO IV'S, BLOOD PRESSURE ETC. SO I WOULD TELL EVERYONE TO GET A MEDICAL ALERT BRACELET IT YOU DO NOT HAVE ONE. THEY DO NOT COST THAT MUCH UNLESS YOU WANT A GOLD ONE.
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HAVE A WONDERFUL AND SAFE DAY

Anajo · Posted: Mon Nov 29, 2004 11:46 am Post subject: Doctors

Doctors are not experts in all fields. My surgeon could not even come close to answering specific questions related to breast cancer that my oncologist could. After my mastectomy I woke up with a numb tongue. My surgeon claimed that it was due to a vitamin B12 deficiency and that it couldn't possibly have anything to do with the operation. I then contacted the anesthesiologist who sent me to an ear, nose and throat docter; he said that the tube had moved during surgery and was resting on a tongue nerve. Anyway, the point is that if you have a question, you have to go to the correct specialist. Surgeons are great at surgery, but they don't know a whole lot about other areas of medicine.[/url][/b]
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JoAnn

Marion · Experienced user Joined: 28 Nov 2004 Posts: 60

I definately agree with the confusion by those in the medical field regarding lymphodema. A friend told me about it rather than the doctors and when I asked the radiologist and oncologist about it they told me it "usually wasn't a problem and not to worry about it" but had the nurse get me a brochure on it. Only when the doctor left and I was able to talk to the nurse specifically did she indicate it was something to watch for and gave me recommendations on massages, sleeves, and all the do's and don'ts to keep it from occurring. I've learned that we are our own best advocates and the more research we can do on our own, the better prepared we are to take control and to know what is right for ourselves.

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