Baseline Measurement for Lymphoedema
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No baseline measurement and when I expressed lymphedema concerns before the full axillary clearance they said of lymphedema is so rare its not worth being concerned. Obviously surgeons are not getting feed back from physiotherapists about what is happening.0
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@Brenda5 Most surgeons will admit to 20% with anx clearance and radio, Physio says closer to 25% unless radio involved, then add another 5%.0
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Last stats I heard (may be a bit old) were approximately 35% of those with significant node removal get lymphoedema (short or long term). Not quite my definition of rare.0
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A 2017 research paper, following almost 1000 people over 10 years, found a 41% incidence. Obesity, seroma (we still cling to the orthodoxy in Australia that lymphoedema and seromas are not related), chemo infusions in the affected arm and advanced disease all increase risk according to this study. OK, it's only one study, but what is well known and seems to me to be particularly unkind, is that lymphoedema can occur up to 15 years after treatment. Not rare and lurking!!3
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Great topic @Sister . I'm like you @Afraser with the don't get me started. lymphedema was barely mentioned to me with just a cursory don't have BP's and blood tests on that arm. I admit I got a bit complacent after my first diagnosis as had none. However half way through treatment for recurrence she reared her ugly head. My BS was still in denial that I Had it and would ask me why I was still wearing a sleeve and it would get better. It was my PS who I went and saw down the track to discuss reconstruction with who said I was a sitting duck for lymphedema after a lumpectomy with 6 nodes removed followed by chemo and radiation and then more nodes and chemo after second diagnosis. A radiographer who has since left town said we all should have had baseline measures. Clearly from the responses there is inconsistency around the country. I for one think we all should have one.Paula xx3
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No baseline for me either. I’m nearly four months post lumpectomy and SNB, (followed by radiotherapy) but still having problems with upper arm and side of chest under arm.
I have seen a lymphodema person twice who has measured me and noted small differentials, but i wasn’t thrilled with her idea of suck it and see how it goes given that I can feel a difference, so have booked in to see another person who will measure bio impedance.
I can’t tell if my problems are seroma related, nerve damage related, beginnings of lymphodema or all of the above. At various times I have tried doing the recommended BC surgery recovery exercises but each time have found that it seems to make that part of the arm worse. I’ve stuck with just getting back into daily life and gradually getting back into light weights and very slow swimming, and trying not to overreach with that arm since it seems to make it worse. These days exercise seems to be the recommended cure for everything, so I am trying to do what I can. Hard to figure out what to do when I don’t know what I’m trying to counteract.
my BC nurse said that they were wanting her to get certified to be competent in doing pre-surgery tape measuring of arms. I’m thinking to myself, what in the world is the hold-up to having that service available to all bc pre-surgery patients? Of all the things that can be less than ideal after surgery, i would have thought a “simple” bio impedance measure or at least arm circumference measurements would be a small step to provide very useful data for managing post surgery effects.
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Oh, and the comment my bc nurse made was, lymphodema is very rare if only having sentinel node biopsy! But this was after all the same nurse who said, when I got a seroma, “I wouldn’t have expected that!” Lol0
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I also got baseline measurements done, public tertiary hospital in Brisbane. This included ROM measurements and some fancy electrodes which physio said evaluated how my body distributed fluid.
Keen to get these rechecked next week, hoping to catch them at clinic, as I feel starting to accumulate fluid under my left armpit. Am doing lots of general daily living as well as my exercises though to help.1 -
My breast care nurse did baseline measurements for me when she saw me for a pre op appointment. She spoke to me lots about the risks and signs etc2
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No baseline. I asked surgeon if a risk, and was told only 5% chance of developing (9 nodes wee removed in the surgery in the end). Now seeing specialist physio due to cording (wish I knew about that before it happened!!), so have some measures to go on, but pre-op would have been better.
I get it that these are side effects of life saving surgery, would not have changed the surgery at all, but pre-op physio info would be welcome.
Saying that, at pay op check as soon as surgeon saw the coding, she sent me straight to lymphodoema practitioner physio.1 -
I was given baseline measurements prior to scheduled surgery because I’d asked lots of questions and I was keen for it . Physio told me she’s like to do it for everyone but simply didn’t have the time available in her clinic . I’d had two left sentinel nodes taken . I was a public patient in Perth .
I’m still receiving physio treatment for the ongoing left leg lymphedema which continues to be an issue . No noticeable fluids in the left arm . Yet . It’s been seven months and I watch it all like a hawk .0 -
Last week I saw the lymphodema specialist and after doing measurements using three different bits of kit, she said my arm was fine, but that I did have some fluid in the breast, and to wear a sports bra and come back in a year for comparison measurements unless anything changed. She attributed it to aftereffects of radiotherapy - “you’re still cooking”. Radiotherapy finished 8 Feb. I’m small breasted and haven’t been wearing any bra.
Then this week I did interval training on the stationary bike (10 minutes totals on the bike), then the next day cycled slowly to the breast surgeon (about 4 kms) for my 4 month checkup. He said all healing nicely, but that I had a bit of lymphodema in the breast. He pointed out that my left breast was quite hot compared to my right breast. And to my dismay, I could see that since last week my left breast had swollen up so that it was larger than my right breast, and I hadn’t really noticed the temperature difference before (although at night, if I’m going to get hot, it will be my upper left torso that needs the blanket off more than any other part. At least at moments I’m finding that size differential bit mildly funny, since the surgeon had said my left breast would end up smaller after the lumpectomy.
I have hit panic stations since the surgeon appointment — I don’t really know why. Cancer meh. Lymphodema/swelling OMG. Maybe I need to reorder my priorities. I’ve gone back to wearing the berlei bra 24x7 that I got at surgery time and doing lymphatic self massage (handout from first visit to Physio). After 48 hours, some reduction in swelling, but I’m getting the feeling that this is going to be an ongoing issue.
I’m wondering if doing any sort of aerobic activity at the gym, where one inevitably roasts in the humidity, is just asking for trouble. And I am not sure how to balance the advice to do exercise to help the lymphatic system work better, but that same exercise making me swell up. I’ve looked up the gym schedule to see if I can go to an aqua workout since I read that water exercise is better for lymphodema. I’m supposed to be building on my fledging amount of aerobic activity so that I can improve my low blood pressure, but that doesn’t seem to be helping swelling.
It seems like I get my head into a happier space, and then gosh darn it I seem to find something to deflate me. I know it shouldn’t bug me but for some reason I can’t quite grasp onto it does.0
