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Lymphedema, Another Reason for Self-Advocacy

Lymphedema is another reason for self-advocacy alright.

As a follow up to the previous great guest post by Jan, I decided to share a little about my limited knowledge and experience with lymphedema. This is an important topic that is not given nearly enough attention.

I read somewhere that every woman (and man) who has had breast cancer surgery should consider herself (himself) to potentially be a person with lymphedema. That might sound extreme, but it does emphasize the importance of taking this subject seriously.

For whatever reason, this is one area where I did not receive much information following my cancer surgery. I was told to not allow blood pressure readings and blood draws on my “bad” side (the one where fourteen lymph nodes had been removed), and that was about it. I don’t remember the word, lymphedema, even being used. Since I wasn’t given information, I didn’t worry or even think about it.

How could if I didn’t even know about it?

After attending one of my support group meetings where the topic that evening was lymphedema, I thought, wow, I need to get my arm checked out. I had more than one of the symptoms listed on the handout we received that night. These symptoms had been on my mind, but I really didn’t know what to make of them.

At that particular meeting, I sat by a wonderful, older woman who had had breast cancer 35 years ago. She told the group she developed lymphedema about 18 years after her diagnosis. Her case was quite severe and obviously causing her discomfort and anxiety. She also confided to us about her radical mastectomy and the fact that reconstruction was not even an option for her back then.

I couldn’t help thinking to myself how far we have come in some things; but on the other hand, too many things have not advanced  far enough or fast enough.

We need considerable more RESEARCH and advocacy on many fronts, including lymphedema.

Following that meeting, I scheduled yet another appointment for yet another evaluation. At that evaluation, I learned much more about the elusiveness and unpredictability of this condition called lymphedema

After my evaluation, lymphedema was not confirmed in my arm, but it wasn’t “not confirmed” either. This is also quite common I learned. There is not universal agreement even as to what truly constitutes early stage lymphedema. Clear standards and uniform diagnostic criteria are not fully agreed upon by all in the medical field.

I do have slight swelling in my armpit. I had a couple of questionable measurements, and I sometimes have a tingling and heavy sensation in my arm. I have limited range of motion in my affected arm, and it just feels “off” at times. Based on these things, we decided to go the preventative, just in case, route.

So my next stop was to get fitted for a compression sleeve, another evaluation, but this one was easy, just sizing!

Now, I am trying to figure out when to wear my sleeve. There isn’t anything really definitive here either. It seems to be kind of a figure out what you need, and do what works best for you approach.

Lymphedema, another reason to self-advocate

In addition to the many resources listed in the previous post, I want to recommend a book I found to be really helpful. It’s called Lymphedema, A Breast Cancer Patient’s Guide to Prevention and Healing, by Jeannie Burt and Gwen White, P. T. It’s a quick and easy read that covers the whole topic quite thoroughly. It’s an informative reference book to keep on your shelf and answers a lot of questions that might come up.

One simple, yet to me, profound statement that really stood out in the book was this:

(In the past) Most women were told that nothing could be done for it (their lymphedema) and to just live with it.

How often have women been told that through the years?

How often have women been expected to keep quiet and just accept?

For years, this condition was trivialized by some doctors, and women were led to believe there was nothing that could be done for them.

Carolyn Renowicz, M.D., director of the Division of Gynecological Oncology at Albert Einstein College of Medicine, says:

Some doctors trivialize lymphedema, dismissing it as ‘just a little swelling’ that is a small price to pay for cancer treatment.

Outrageous really, because lymphedema is a serious condition and if left untreated can be emotionally as well as physically devastating.

Lymphedema is one more reason for self-advocacy.

If you have symptoms, get them checked out. If you have questions, get them answered. And, as is the case for most things, be your own best advocate. Speak up. Let your voice be heard.

If someone doesn’t listen to you, find someone who will.

Do you have lymphedema or do you know someone who does?

Did you receive adequate (or any) information about lymphedema with your treatment plan?

Have you ever been told to “just learn to live with it”?

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#Lymphedema, another reason for self-advocacy #breastcancer #cancer #womenshealth #advocacy

Gloria Pereira

Wednesday 21st of August 2013

I developed Lymphedema after an,axillary dissection, lumpectomy, chemo,.radiation for breast cancer in 2001. I am also a Type 2diabetic. After my diagnosis, I was told by Kaiser that there was no treatment protocol for treatment. I did meet with a physical therapist who gave me a few exercises and told me she didn't think bandaging would help. ”Learn to live worn it”. I continued to have problems with swelling, I developed a ganglion cyst on my wrist. I also developed Graves Disease. Between the Lymphedema , diabetes and Graves disease, by body went crazy, could control diabetes due to graves,.lymphedema arm and underarm pit were so swollen and tight, carpal kicked in and my hands began losing feeling. Had sts perform tests on hands, the results were due to old age and , again, learn,to live with it. lost insurance and no medical help for 3years. Finally got SSD and medicare. One doctor sent me to a physical therapist and even though she had no lymphedema training, heeled loosen the scar mass under my arm. Dr retired, went to new Dr. that told me all these problems (diabetes, graves, lymphedema,.fibromyalgia) were in my . mind. He's practices 49 yrs and knows lymphedema doesn't hurt ir cause any disabilities. Went back to Kaiser Medicare program and primary doctor only concern was diabetes. Once we get that u.der control, we will address the other issues. After 1.5 yrs, diabetes still problematic, xray showed degeneration of my neck vertebrae, and still no treatment for other complaints. in December of 2012, Kaiser informed Social Security disability that I was only being treated for diabetes and as of March 31, 2013,.I lift my SSD and medicare. So here I sir,.no benefits, no insurance, unable to work, had to quit 8 prescription drugs ”cold turkey” due to losing benefits. I live on food bank food(thank god for them), which makes managing my diabetes by diet only impossible. I tried to get a job, but after 6 months, I can no longer close my hands. When I bend my fingers, the dislocate when trying to straighten. The surgeon who performed my breast cancer surgery apologized to me after my diagnosis. I never understood why until a few years ago....he knew this disease would drastically alter my quality of life. I'm appealing the SSD, but without medical care i(180 days before they get around to me), I've lost hope. Please pray for me, it's all that left.


Thursday 22nd of August 2013

Gloria, I don't know what to say. I'm really sorry. I hope you can find some assistance somewhere.


Saturday 20th of July 2013

My surgeon told me that following all treatment (included chemo, mastectomy, and radiation) that I would "only have a 35% chance of lymphedema." Apparently, I was the first patient to ever turn that into a fraction on her. Even she admitted 1 in 3 did not sound like good odds. She automatically sends all her mastectomy patients for therapy for both range of motion and to try to prevent lymphedema, and in addition to precautions they told me to follow and preventative exercises, I was fitted with a lymphedema sleeve to have "just in case."

A few weeks after radiation, my arm and shoulder became extremely painful and swollen. I went to my oncologist the next day, and even though swelling was not very severe, I was diagnosed with lymphedema, told to start wearing the sleeve, and put back in therapy. Today, the swelling is gone most of the time. But if I try to go without the sleeve for anything more strenuous than reading, my arm starts to hurt and swell. Some mornings I wake up with pain, tingling, and swelling, but a couple of hours of wearing the sleeve, plus doing my massages and exercises, seems to bring it back under control.

My lymphedema therapist told me that there are experiments going on with some kind of lasers to see if they can help restore lymph vessels damaged by surgery and radiation become better functioning. Of course, they can't grow new lymph nodes so it wouldn't be a total cure for lymphedema, but she said the idea was to help lymph fluid better reach more distant lymph nodes. I told her if she ever gets involved with that and needs a guinea pig, I'm her first volunteer. So there may be some hope for us coming.


Monday 22nd of July 2013

Elizabeth, I'm sorry that on top of everything else, you must also deal with managing lymphedema. It sounds like you are managing it pretty well, so that's good. And wow, that research sounds really interesting. Thanks for sharing about that too. I think there might be lots of people volunteering to be that guinea pig!

Susan Berger

Thursday 27th of June 2013

I am a 15 year breast cancer survivor. Because I had lymph nodes removed I am at risk for lymphedema. Thankfully I do not have lymphedema. I am also a journalist and wrote this piece for the NY Times about lymphedema and exercise


Thursday 27th of June 2013

Susan, Congrats on the fifteen years! I am at risk as well as I had fourteen nodes out. Always trying to be aware of the symptoms...Thanks so much for sharing the link to your article. Stop by again.

Alice Bruns

Saturday 23rd of March 2013

I got lymphedema after having a total shoulder replacement surgery. Two months after I noticed the swelling in my arm and went back to see the surgeon. He ran tests to see if I had a blood clot , there was none so he sent me home. No referal to see my regular physician, no comment about any other possibilities. Fortunately I had a scheduled appointment for a bi- annual check up and my ( woman) doctor recognised what was going on and referred me to a lymphadema therapist. I have had nurses in the hospital get angry with me when I refuse a blood pressure cuff or saline line put in that arm. Now I wear a medical alert bracelet and had it engraved with instructions so I will be taken seriously. The lack of understanding by my surgeon is what upsets me, he said he had never heard of it happening. My son's doctor told him that I should have been warned it was a possibility in that type of surgery. Why are physicians not educated in this? Scarey eh?


Monday 25th of March 2013

Alice, I'm sorry to hear that you developed lymphedema following your surgery. I'm glad it was recognized at your bi-annual check-up. It's surprising that nurses have been annoyed with you when you refuse to have blood pressure taken in your affected arm. That seems wrong. It seems there is a need for more education about lymphedema, perhaps even in the medical community. Thanks for sharing.

Susan Zager

Saturday 23rd of March 2013

I was extremely lucky that my oncology surgeon referred me to a lymphadema specialist. He said I had a 15% chance of getting lymphadema. I did all of the exercises very carefully after my surgery. I ended up having more trouble with my radiated breast when I had a recurrence and need a mastectomy. Lots of surgical failures. I think everyone should have physical therapy after surgery with a lymphadema specialist. I am very lucky. I fly everywhere without a sleeve and lift 20lbs on each side of my arms. I am going to keep working out and hope I avoid the problem. My best friend had frozen shoulder and lymphadema. It's very real. So glad you wrote about it.


Monday 25th of March 2013

Susan, I agree with you about the physical therapy. After breast surgery a consult with a PT would be helpful for so many reasons, lymphedema awareness being one of them. I'm sorry to hear about all those surgical "failures". It sounds like you are doing what works for you. Thanks for adding to this discussion.

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