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Is it Lymphadema

Theskinnyscot's picture
Theskinnyscot
Posts: 31
Joined: Dec 2019

good afternoon ladies, it's been a few weeks since I last posted here but I am again in search of your wisdom and knowledge.  

So, I completed 25 rounds of radiation on the 27th of Jan and it went fairly well with fatigue being the most significant issue. Towards the middle of the treatment I noticed swelling in the groin area and upper thighs but when I mentioned it to the radiologist or the nurses they were very dismissive. Now I will say that they might not have thought it was much as I am 5'9" and only weigh 102lb but I could tell the difference. The day after completion of rad. I saw my primary care dr. She agreed the it looked like it could be mild Lymphadema. To see a certified Lymphadema therapist I had to first see my surgeon's nurse practitioner so that she could confirm and then get me a referral. Well first she wanted to refer me for an ultrasound to rule out a blood clot! I was getting a little frustrated with this process and I suggedted that a blood clot would not produce bilateral swelling and only in upper thighs. She agreed and got me the referral to see the Clt on the 23rd of March.

I returned to work on the 17th and was only scheduled 2 days/nights at my request. I work in a bistro so I am on my feet but at the end of my first shift I had to unbutton my jeans and there was about a four inch gap between button and button hole. Thank goodness for aprons. I must admit I was liking the fact that something was tight on me, that has not happened for years and I was wearing 00. The next night I checked my weight before going to work and it was 103lb but when I got home it was 109lb. Thighs were even more swollen and my ankles were now slightly puffy. I elevated my legs for most of the night and by the morning they were a little better and throughout the day my weight gradually went down to 105!

i know this is very long winded but Google gives me very contradictory info and I don't know what I should do to alieviate this problem untiil i see someone. I have worn spandex/Lycra leggings to possibly help, I just don't want it to get worse. Thanks for any suggestions or if I am barking up the wrong tree. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2878
Joined: Mar 2013

I am not a doctor, but I would get it checked out.  I did have swelling and the onc immediately sent me for a ultrasound to ensure it was not a blood clot, and when that was cleared, they set me up with a physical therapist who specialized in treating cancer patients.  

She explained what she was doing (even offering to teach someone how to do it to me) on getting areas ready to receive the fluid, gently message it, then wrapping it.  She also measured and properly fit me for a compression garment.  They come in pantyhose and different strengths. (10- all the way up to 50-60) There are important things to know about them, such as making sure they don't have kinks in them when you are wearing them as that can cause issues.  She suggested latex gloves, which are great grippers on the heavy duty ones (I wear 30-40) and I am good at it all now. 

They tell some of the other cancers about how to prevent lymphedema, but nothing was said to me.  

I would consider this serious and get it looked at.  That is my opinion.  You know your body - keep pushing.  Just a few more days.

This video reminds me a lot of my PT:  https://www.youtube.com/watch?v=CTGqYOKOvfU

Theskinnyscot's picture
Theskinnyscot
Posts: 31
Joined: Dec 2019

thank you, No time. I have written a response 3 times but it keeps coming up with "error please try later" and then I lose the post so let's try this shorter response

Theskinnyscot's picture
Theskinnyscot
Posts: 31
Joined: Dec 2019

I managed to get in to see the lymphedema specialist early and she confirmed that it was lymphedema. I will go in. On the 20th to get fitted for compression leggings and maybe a machine, depends on insurance and what I can find out about them.So glad this site is back up, I didn't realize how much I would miss checking in every day

cmb's picture
cmb
Posts: 645
Joined: Jan 2018

It's good that you were able to see the specialist earlier than expected. I know that my legs, especially the left one, feel better when I'm wearing the compression stockings for my lymphedema. I'm sure you'll notice the difference once you're fitted with the new leggings, especially since you're on your feet while working.

I also wear a different device on my left leg at night. (My right leg doesn't require compression at night). When the physical therapist first described the nighttime options, I was concerned that it would be bulky and uncomfortable. But it's fine.

Theskinnyscot's picture
Theskinnyscot
Posts: 31
Joined: Dec 2019

Thank you CMB. The compression machine guy is coming to my house on Thursday to show me the machine and explain how it works etc.,I am going to see what I can find out about the company, it is called " tactile medical" 

cmb's picture
cmb
Posts: 645
Joined: Jan 2018

I hadn't heard of this company or their system before, so I looked up their website. I'll be interested in hearing how you find it, should you decide to try it. 

Theskinnyscot's picture
Theskinnyscot
Posts: 31
Joined: Dec 2019

Hey CMB, the young man from the company came by right on time and took some measurements and put on one whole leg sleeve/garment and let it do its thing while he explained its purpose and benefits etc. it did feel really good but I told him it would depend on how much out of pocket I would have to pay as to whether I could get it. Fast forward less than 24hrs and the company rep calls and says the two leg garments and pelvic wrap with the machine is ready to be shipped. I just had to call to get the cost before giving them the OK. To my delight my insurance told me I had no copay as I had already met my deductible and out of pocket for the year( woohoo radiation therapy). So it has been shipped and I should get it in 3-5 days. They told be they would also set me up with a trainer? So far I am impressed with there customer service and I hope this machine helps, it does certainly feel good unlike the torture from my little 4'10"powerhouse therapist. Lol. She is trying to break up scar tissue in my abdomen and groin area, not pleasant but necessary. The company is out of MN. 

Theskinnyscot's picture
Theskinnyscot
Posts: 31
Joined: Dec 2019

Woohoo, got my pump. Timing is everything since they are canceling non urgent appointments my fitter for compression garments and my lymphedema therapist are not seeing anyone. I am supposed to have a trainer come to show me how to operate this system but I figure that might not happen or at least not soon so my husband and I watched the video and figured it out. This should tide me over until the current crisis resolves, hopefully. I work for Marriott so I am temporarily unemployed but that also means I am not on my feet for 7/8hours a night. So all is good ⚖

LisaPizza's picture
LisaPizza
Posts: 340
Joined: Feb 2018

Oh wow, so glad you got that done in the nick of time. 

MAbound
Posts: 1105
Joined: Jun 2016

So sorry that you got laid off. I hope it won't be for long enough to cause you any hardship. Enjoy the pump!

cmb's picture
cmb
Posts: 645
Joined: Jan 2018

I'm also sorry to hear that you got laid off, but happy that you got the pump delivered so quickly. I hope it works well for you.

I just stocked up today on some new compression stockings and the night time leg wrap. The shop has a big sign that Medicare doesn't cover these items so I wanted to get new ones before I switch to Medicare in a couple of months. My current insurance did cover some of the costs of the items last summer.

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

Back in October I could barely walk as my legs had swollen so much that the muscles and joints were pressured so tight that it was too painful to walk. Sent to L-PT immediately and had 16 sessions (2/week) but also got the compression machine from Tactile and have used it regularly - daily for a month, now only every other night. I am now able to walk for 30 minutes and just wear a light brace on my right knee which has OA and needs replacing but not doing that! I think you will find the compression makes things so much better.

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