There still seems to be a fair amount of confusion out there about lymphedema in general, the true risk of developing it after breast cancer surgery and also about preventative measures a patient should or should not adopt as part of their post breast cancer surgery lifestyle. Things are improving, but confusion persists.
Why is there so much confusion?
After my bilateral mastectomy I distinctly remember being instructed to avoid having my blood pressure taken on my left arm. I was also told to avoid having blood drawn from that arm. I was to avoid these procedures from there on out due to the fact fourteen lymph nodes ended up being removed on the left side. However, that was it. I don’t remember the conversation going any further.
As I recall, no one went on to state that I was to avoid these procedures in order to decrease my risk of developing lymphedema. And admittedly, before breast cancer I don’t believe I had even heard of this word/condition, so how was I to know to ask about it?
I didn’t learn about lymphedema until later when I attended a support group meeting and a speaker gave an informative presentation about it. At that time I was having some issues and after carefully listening to the speaker, I decided to get things checked out.
Eventually this led me to an appointment with a physical therapist. Ultimately, it was determined by my team that I probably did not have lymphedema – yet. But it wasn’t entirely ruled out either.
This is another thing about lymphedema, unless your case is severe enough, it’s sometimes hard to tell definitively if you do or do not have lymphedema.
I was then directed to be mindful of the potential risk of developing lymphedema. Measurements were taken so I would have a baseline (better late than never) and could be monitored from that point in time anyway. It was also determined I should be fitted for a compression sleeve and gauntlet and adopt the typical preventative behavioral measures into my new lifestyle as part of my new normal.
So, I’ve been wearing a sleeve when I fly and by the way, I had a very interesting experience recently getting through TSA wearing my sleeve. You can read about that here. Why the heck these sleeves are such a mystery to so many TSA employees is beyond me…
I wear a sleeve when I exercise, but admittedly only when I’m doing arm work or if I’m doing something strenuous and working up a “real” sweat.
I don’t generally wear one while gardening, raking or shoveling snow, but often wonder if I should be.
I don’t really worry too much about lugging around heavy stuff because I fear lymphedema, but rather I avoid doing this when I can because I have other arm/shoulder issues.
I do still carry my purse on my left side because I can’t seem to break this habit after all these years.
I don’t worry about insect bites and cuts much, because well, what can you realistically do to avoid insect bites and cuts in real life other than being careful? I still have veggies to chop. I still live where there are lots of mosquitoes in the summer time. I still have weeding and yard work to get done…
I have resumed lifting weights, although I believe it’s very important to start slowly and of course discuss this with your doctor first. I’m not yet back to where I was on this, but that’s okay.
I do avoid having my arm in a hot tub and I have yet to go into a sauna because I’m afraid to.
Am I doing enough?
Am I doing too much?
I sure don’t.
And I don’t think I’m alone.
Now there is even more debate as to whether or not some of the long-time recommended preventative measures are even necessary. You can find a recently updated position statement of the National Lymphedema Network here.
So again, this leads me to ask just why is there so much confusion?
Like usual, the simple answer is because there are no definitive answers. Lymphedema remains a bit of a mystery. It’s hard to determine who is truly at greatest risk of developing it and in this, too, there may be a genetic factor at play.
As Step Up, Speak Out states on their site:
“As there is no gold standard for diagnosis, the criteria will vary and that adds to the confusion around how many people develop it”.
As always, more research is needed.
The following tips might be helpful in sorting out some of the confusion, but they are not to be taken as medical advice:
Know your own medical/surgical history. If you’ve had surgery involving lymph nodes, find out how many were removed. Get a written record of this.
If you are facing surgery for breast cancer (or any surgery involving lymph nodes), ask to be measured beforehand so there will be a recorded baseline. This will enable you to be more effectively monitored later on if swelling occurs.
Discuss lymphedema risk with your doctor(s). If you don’t bring it up, they might not. Also discuss their viewpoints on preventative risk behavior adjustments, if any, that you will be advised to make.
Learn what you can. Visit reputable sites such as: The National Lymphedema Network; Step Up, Speak Out and Lymph Notes.
Familiarize yourself with the symptoms of lymphedema such as a heavy or tight feeling, swelling, change of color or general change in skin condition of the affected extremity. As always, if in doubt, get things checked out.
Remember you know your body and your lifestyle best. Make decisions, adaptations (after learning what they are of course) that you feel might be beneficial and also be changes you can live with. Recommendations are evolving on this front, so ultimately you decide.
Ask questions and keep asking until you get answers that make sense to you.
In short, become a well-informed patient and self-advocate regarding lymphedema in your post cancer surgery life too. Nothing new there, right?
It’s your body. It’s your life.
Other posts on lymphedema you might be interested in:
Do you have lymphedema?
Have you adopted any of the recommended preventative life-style measures?
Do you feel confused about lymphedema issues at times?
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