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Lymphedema

Soup52's picture
Soup52
Posts: 894
Joined: Jan 2016

This probably is a stupid question, but how do I know if I have Lymphedema ? I have gained a little weight lately and now my legs are feeling weird and I feel they are getting larger especially the thighs . My legs just don’t feel right. It almost feels like my neuropathy is moving up my legs. I’m out of town for two weeks so I can’t go to the doctor and my new oncologist at home hasn’t started yet.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2544
Joined: Mar 2013

Soup, I was told you can get lymphedema at any time, not just right after surgery.  When my one leg was swelling I called the doctor and they got me in for a doppler immediately to make sure it wasn't a blood clot.  When they determined that there was not a blood clot, we figured it was lymphedema.  I was set up with a physical therapist who specialized in helping cancer patients and I had weekly massages,  wraps, and she properly fitted me for a compression garment.  (I just bought another one last night because they eventually lose their power)

I would suggest seeing if you can get in just to make sure it isn't a blood clot, once you explain your history and your concern they should get it.  

Are you walking or sitting more or less than normal that may make your legs say, "hey - what are you doing?" 

Let us know how it goes - and it is NOT a stupid question.

Jairoldi's picture
Jairoldi
Posts: 197
Joined: May 2017

I worried so much about that.  It hasn't happened, at least not yet.  My doctor recommended getting 15-20mm support socks and to wear them all of the time in the hopes of staving off lymphedema.  I went to a medical store and was fitted.  Last summer when it was sooo hot and humid I got the next strength ones.  So far so good.

 

zsazsa1
Posts: 290
Joined: Oct 2018

Call your primary care doctor now and ask them to schedule you for an ultrasound to rule out a blood clot, and for a visit the day you get home.  

derMaus's picture
derMaus
Posts: 552
Joined: Nov 2016

This post was timely for me. My surgery was in November 2016 with 37 lymph nodes taken, followed by two different rounds of external radiation. I never had a single issue until 6-8 weeks ago, when I noticed my thighs were suddenly larger and my pants were getting tight. I attributed it to holiday eating. At my infusion the first week in January, I was discovered to have gained 12 pounds in the last three weeks, which the nurse confirmed was NOT just from christmas cookies. After an utlrasound confirmed no blood clots, I was put on Lasix (diuretic), which helped only a little, and referred to the local "lymphedema clinic". Yes, there is such a thing and, yes, I did develop lymphedema out of nowhere, with no warning, 2+ years after surgery. Of course you will want this checked out when you get home, but your symptoms sound almost exactly like mine. I'm currently wearing compression stockings from Amazon while waiting for my professional fittings. I'm hoping that your symptoms resolve on their own. I'm sorry you have to deal with this on vacation!

LisaPizza's picture
LisaPizza
Posts: 207
Joined: Feb 2018

12 pounds, goodness, that must have been frustrating! Did you find that it affects mainly your thighs as opposed to starting at your ankles and working its way upward?

cmb's picture
cmb
Posts: 343
Joined: Jan 2018

Although I've always had thick ankles and calves, I did notice a couple of months ago that they seemed larger than normal, but I couldn't swear to the change. My weight has been fairly consistent since last spring, so I couldn't attribute the thickening to weight gain. An earlier post on this subject made me aware for the first time that lymphedema could strike years after surgery – a complication I hadn't realized,

I asked my PCP about it when I saw her yesterday, but we've decided to hold off on the stockings for the moment. I'm still trying to get to the bottom of what's been causing my stomach to ache since the fall. A CT-scan this week didn't show any sign of cancer (yeah!) so I've scheduled an appointment with the gastroenterologist. If that doesn't turn up any cause, then I'll reevaluate the metformin I take for my Type 2 diabetes. Stomach distress is a side effect of that drug and one my sister developed after years of being on metformin.

Soup52's picture
Soup52
Posts: 894
Joined: Jan 2016

Thanks everyone! I had a pulmonary embolism about10 yearsago and  was checked for bloodclots in my legs a couple years ago and it was negative. I had knee replacement a year ago and did fine. I will get everything checked out when I get home. I will have a ct in April with an appointment with my new oncologist. We do have lymphedemaspecialist the our cancer center too.

derMaus's picture
derMaus
Posts: 552
Joined: Nov 2016

I had my first-ever lymphatic massage on Tuesday and was surprised at how much it helped; the effects were immediate and lasted over 2 days. The clinic put in for one of those 'pneumatic compression devices' that look like the bottom half of a storm trooper outfit; we'll see if my insurance decides to cover it. I'm hoping they will since I can't see myself keeping up with the recommended 1-hour-per-day self massage. An hour a day! Does anyone here do that? Obviously I'm hoping I can get away with less...

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2544
Joined: Mar 2013

B, I remember how gentle the massage was went I had it and was very appreciate of all the PT nurse told me.  I remember her asking me if there was anyone I wanted to have trained to do the massage for me, I am single, I really didn't have anyone but loved my visits to her. 

I hope you get your storm trooper costume, does the hour have to be all at once or can you spread it out, some in the a.m. and some in the p.m.?   

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