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.
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.