Wednesday, March 6, 2013

Well they scared the crap out of us

When women are diagnosed with breast cancer, they are brainwashed scared into thinking that they will get lymphedema and  end up with an arm the size of an elephants. If they have an axillary node dissection where a dozen or more lymph nodes are removed in the hunt for evil cancer cooties, they are given a list of rules for the rest of their life:
  • do these stupid wall climbing exercises to make sure your arm doesn't swell up
  • never allow anyone to take your blood pressure or stick any needles in that arm 
  • never carry a shoulder bag or any bag on that arm that might compromise your circulation
  • never lift anything heavy
  • never injure your arm or fall on it.
  • at any signs of swelling, contact your doctor.
And these are for the rest of your life.

Now they come out with a study which says "Breast Cancer Patients’ Fear of Developing Lymphedema Far Exceeds Risk". Well they scared the crap out of this with the 'rules' they gave us.  I even had a special session with a nurse to review everything about lymphedema. 

I was fine for about a year and a half and fell on my arm. Now I wear a stupid sleeve when I work out. I can't have needles or blood pressure taken on my left side. If I wear a watch on my left wrist, no matter how loosely, my arm feels heavy and swollen for days after.
So maybe they scared me, but they were right. Crap.


Anonymous said...

My MIL had a radical mastectomy 38 years ago removing all the lymph nodes. She wasn't given any special instructions about not lifting heavy items and being careful about physical activity (she was told not to shave with a razor and has used a depilatory all these years.) She has never had any trouble with lymphedema.

I was also given the scary talk about lymphedema and initially worried excessively about it. Over time I have slowly increased the amount and type of exercise I do but have continued to observe other precautions like blood pressure and needle sticks. I notice that sometimes, especially hot and humid days, my arm feels heavy and tingly, but over all I feel like I am making a reasonable compromise between the fear and living as I want.

Lois K

AnneMarie said...

There is a surgeon at Columbia doing some pretty cutting edge things w/lymphedema..... My sister developed this after just sentinel nodes were removed. I'm walking around thinking, "they only took five from one side and six from the other" on me so I'm safe. Apparently that's yet ANOTHER bit of misinformation, too!


Nancy's Point said...

I was actually never told much about lymphedema following my surgery other than I shouldn't have blood pressure taken or blood withdrawn from my left side. So I didn't get the crap scared out of me back then. I've been learning as I've gone along. I, too, wear a sleeve when I work out involving my upper body. It's one more thing to think about isn't it? Crap!

Renn said...

I was never cautioned about lymphedema. It was only through blogging (and the BCO boards) that I learned about it, and it [rightly] scared the crap out of me!

What is interesting about this study is one paragraph in particular: "Researchers found that the majority of women adopted as many as five precautionary behaviors as early as six months after breast cancer operations and maintained these behaviors long term despite their actual risk—meaning they undertook these measures regardless of whether they had undergone ALND or SLNB and their course of treatment (radiation and adjuvant chemotherapy)."

Well to me, perhaps the reduced rate of lymphedema exhibited was *because* these women adopted "precautionary behaviors" and maintained them! Right? Anyone else think this after reading that study?

Caroline, thank you for this discussion!

I Started a New Blog

I started this blog when I was diagnosed with breast cancer in 2007. Blogging really helped me cope with my cancer and its treatment. Howe...