Lymphedema and fluid retention

busymomrn0629

Good morning! I was diagnosed with breast cancer about a year ago. I did chemo, radiation and surgery. Fingers crossed, the cancer isn’t showing on any scans. The issue is my lymph nodes were involved and my water weight (fluid weight) can jump 4-5 over night. High protein, low fat diet seems to be working.

Does anyone out there have issues with lymphedema or know something about it?

I’m trying to wrap my head around this issue and get past it too!

springlering62

@AnnPT77 may be able to share some insight.

The “@“ sign is the MFP way of pulling a rabbit out of the hat. Hopefully she’ll chime in.

😘

AnnPT77

I was lucky enough to avoid getting lymphedema, but I do know something about it. (I'm post bilateral mastectomy, lymph nodes removed on one side, *plus* that side got radiation therapy, so I was high risk for lymphedema.)

Are you under treatment for the lymphedema, doing self-massage/manual lymph drainage techniques, professional PT if available, exercises like Lebed method (if approved by your doctor), using compression sleeve(s)/glove(s) if appropriate, or night wraps, etc.? Those things can potentially help symptomatically, reduce potential for complications. (Some people among my acquaintances in my breast cancer support group have received such treatments, with improvement seen. I had PT for cording, and was taught some of the techniques just in case, but have been lucky so far.)

It sounds like you've already figured out that those 4-5 pound fluctuations are not about fat loss/gain, but rather water retention. That insight will be a help. The fluctuations absolutely can make scale results a less helpful gauge of fat loss, though. The implication is that you may need some extra patience, to see your long term weight trend on the scale.

At first, most people stress out over scale fluctuations of several pounds in a short span of days. Those fluctuations - even without lymphedema in the picture - are almost always about water weight shifts or changes in digestive contents (on their way to becoming waste), not about fat gain/loss at all. We always tell them to be patient, and watch their longer term (multi-week, even multi-month) weight trend. Fat loss (with consistent and appropriate calories) is always a gradual thing, and it can play peek-a-boo on the scales with water/waste for a long time. Unfortunately, with your larger-than-average fluctuations, it will possibly take even longer for the trend to show clearly, which is just goldanged frustrating.

In a big-picture sense, what's needed is the patience to wait for the trend to be clear, and some faith in the process. If you can get through the first weeks, and see the trend going in the right direction, it will be easier to feel that faith.

In your case, it will be extra important to use other additional gauges of progress (a thing folks here usually recommend to everyone). There are two general things, measurements and photos.

Measurements would be tape measurements at many body points: Neck, bust (at and under bustline unless you're flat like me), waist (narrowest point & belly button if those points differ for you), hips (maybe multi point), thighs, calves, forearms and upper arms. In your case, if you have localized lymphedema as I'm suspecting, those arm measurements may be particular important, as those measurements would be higher if you have more of the localized fluid retention, even as other measurements may be decreasing.

When measuring, especially arms & legs, think about how you'll measure at the same point each time, but also recognize that there may be a little meaningless variation because it's hard to be exactly exact. Unfortunately, tape measurements are more useful over slightly longer timespans (weeks), too, than day to day. Probably doesn't make sense to measure more often than every week or two, at closest.

Photos should be in close-fitting clothing or minimal clothing. (Believe it or not, you'll want to share the "before" photos one day to celebrate your success, alongside the glorious "after" pics, so don't wear just undies. Wear a bathing suit or sports bra/short shorts or something like that, that's more socially shareable.) Do at minimum front, back, and side full-body views. This is probably an even slower gauge, though: Maybe do photos once a month.

The thing to underscore here is that there's no reason to expect your *fat loss* to be any more slow or difficult than anyone else's (not that it's fast or easy for anyone!). It's just going to be a little more complicated to monitor, in your case, I'm sorry to say.

Usually, we'd recommend someone use a weight-trending app to visualize their weight trend. These are apps that statistically smooth out the random fluctuations (imperfectly, BTW) and make progress projections. The thing is, since you have bigger than average water weight fluctuations, I'm not sure they'd be a lot of help to you. If you have an Android device, the common app is Libra, and it will let you change the time horizons used in projections, which could make it more useful to you. Some others are Happy Scale (for iOS/Apple), Trendweight (with a free Fitbit account, don't need a device), Weightgrapher . . . but I don't think they let you change the time horizons like Libra does. (Not sure.) If you have spreadsheet savvy, you could also do your own spreadsheet (with rolling or weighted averages) to help see trends.

Absent those methods, something other people do is weigh themselves daily, and average the weights for the week, then compare averages over multiple weeks. You don't say whether you're menopausal yet, or not, but before menopause some women only see new low weights once a month (hormones are weird!), which implies that one would be comparing average weights from one month to the next, to see a trend.

I know this sounds really frustrating, but I'm trying to be realistic as well as (I hope) helpful. I'm absolutely confident that you can succeed in weight management by calorie counting, but it may take more than average patience, which is hard, I know. I also know that, statistically speaking, weight loss improves our survival odds. (So does regular exercise, BTW, and some types can help manage lymphedema, too.)

BTW: If your doctor is telling you that you need to strictly avoid repetitive motion upper body exercise forever, your doctor is out of date on the most recent science, as I understand it.

I hope something in that long, ridiculous ramble may be helpful: Apologies for the wordiness; sadly, I'm like that. If you have questions you think I might be able to help with, please ask!

As background, I had stage III locally advanced breast cancer, 5 tumors (largest 3.1 cm) in left breast, one tumor in the right, one positive lymph node (on the left side, with the multiple tumors). Treatment was bilateral mastectomy, axillary lymph node removal on the left side, no reconstruction (my choice, but also would've been difficult in my case), 6 months of chemotherapy (4 x 3 weeks Adriamycin/Cytoxan, 4 x 3 weeks Taxol), six weeks of radiation on the left side, 2.5 years of Tamoxifen, 5 years of Arimidex. I'm now 21+ years post-diagnosis, no recurrence so far (some scares). I started being active shortly after treatment (gradually), but stayed obese for another 15+ years, before losing 50+ pounds with MFP back in 2015-16, at a healthy weight since. I'm 65 now.

Wishing you good health, and success in your weight goals!

vibegirl

A helpful ND (Naturopathic Doctor) on Youtube has a channel called Natural Health Resources..she has some very good info and specializes in the lymphatic system