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Posted 2/25/2021 11:30 AM (GMT 0)
I had my prostate removed just over 3 weeks ago along with 22 lymph nodes. Yesterday I noticed my left leg was really swollen and my first thought was a blood clot. I spoke with my surgeon's office and they wanted me to get an ultrasound to rule out a blood clot. His office is 1 1/2 hours away so I was given an option to go to my local emergency room or schedule an ultrasound in his office the next day. I opted for the local ER option where they did the ultrasound and didn't find a blood clot. They now suspect lymphedema and gave me a compression stocking to wear and told me to keep my leg elevated.

Anyone else had problems with lymphedema and what did you do?
Posted 2/25/2021 12:06 PM (GMT 0)
My wife had two breast cancer surgeries and all the lymph nodes have been removed from her underarm. She has suffered from severe lymphadenopathy throughout her arm since her last surgery in 2010.

Only two things have helped. First a compression sleeve that she wears nearly 24/7. If she goes more than a day without it, she suffers. Second is therapeutic massage from an expert physiotherapist that primarily treats lymphadema patients. Her surgeon referred her. She tries to have regular treatments, but insurance limits the frequency. When she does not wear the sleeve, her arm swells and the channels get like hard cords that you can feel. The massage treatment helps dissipate the fluid that has no nodes to drain into.

Based in her experience, I strongly suggest you get to a specialist and start therapy as soon as possible. The group my wife goes to in Atlanta is Turning Point. I don’t know if they are in your area, but I would check. Also call the best breast cancer surgeons and reconstruction surgeons in your area and they should be able to help as this is common among breast cancer survivors. It occurs with men and PCa surgery, but not as common as with the ladies.
Posted 2/25/2021 6:18 PM (GMT 0)
My wife's situation was similar to JNF's wife but not as bad. Her lymphedema was treated with some therapy early on and the compression sleeve on her arm. 17 years later, she only uses the compression sleeve when working in the garden in the summer otherwise it does not bother her much. She became smart enough to know if it starts swelling for any reason to knock off what she is doing and/or get the sleeve on and wind down the work.

Another related issue was she got cellulitis from a bee sting in the affected arm. It quickly got bad and she spent a night or two in the hospital on IV antibiotic drugs. The doctors seemed to blame the lymphedema for the cellulitis getting so bad so quickly. The cause was the bee sting but the lymph system in the arm was damaged and susceptible. She gets nothing done on that arm like blood pressure checks, blood draws, vaccinations, etc. so if you do have lymphedema, you will have to be careful about things that happen to that leg.

Once identified, lymphedema can be managed, just depends on how bad it gets. Your issue may or may not be related given that you are still in the early days after surgery and excess fluids go downhill. Definitely will want to keep an eye on it with your doctors.
Posted 2/26/2021 12:22 PM (GMT 0)
Compression stocking and elevation have eliminated all of the swelling except for around the knee. I'm trying to locate the next size smaller stockings locally given these don't seem tight enough.
Posted 2/26/2021 1:53 PM (GMT 0)
Guitar,

There are some good online sites for these. My wife buys from Lymphediva. I am sure there are others.

What Guitars are you hunting?
Posted 2/28/2021 10:37 AM (GMT 0)
Lymphedema in a leg after prostatectomy may be caused by the development of a lymphocele in the groin where a lymph node was dissected. It's fairly common and usually resolves in a couple of weeks without any treatment or intervention. Your surgeon should review the ultrasound images and make a determination. Occasionally a lymphocele doesn't resolve on its own or creates so much discomfort that it needs to be drained. If compression socks are doing the trick, it's probably a short-term issue for you.
Posted 3/1/2021 8:30 PM (GMT 0)
I'm still wearing the compression stocking during the day but for the last 2 nights I've just went to sleep with my left leg elevated. When I wake up I'm not seeing any swelling or having any issues. I'm sure hoping it's a short term situation. On a related note, I noticed I had gained 9 pounds the morning I went to the ER. After 3 days my weight was down 10 pounds. I guess whatever fluid was there was forced out of my body somehow.
Posted 3/6/2021 5:19 AM (GMT 0)
I know someone who has lymphedema and that is a massive discomfort for him. He is an athlete, and every time he practices for long periods, his right foot swells up.
This was going on for a long time and even lead to skin damage.
Very recently he has started using compression stockings.
While lymphedema cannot be cured, it can certainly be managed with compression garments.

If your doctor has suggested compression garments, that is what you should do! Wear it through the day, and leave it for the night.
Posted 3/7/2021 8:46 PM (GMT 0)
The last couple of days I've only been wearing the compression stocking when I go out. When I'm home and awake I try to get my leg elevated and when I sleep I keep it elevated. So far it seems to be going well.
Posted 3/8/2021 4:50 AM (GMT 0)
GuitarHunter

I’ve been dealing with lymph edema in my groin and leg since my RRP in 2014. It wasn’t very bad to start with but I went without treating it so it worsened over time. Like JNF’s wife, I was referred to a clinic that specializes in lymph system massage. They taught me some maneuvers that are effective but hard to self administer. My wife will occasionally help me with the massage when it flares up.

Like you, I have seen rapid weight gain when the fluid accumulates. My rehab included certain exercises but walking was the main thing that was recommended. Staying hydrated was the other, which is counterintuitive.

My experience has been that when the lymph edema is flaring, it becomes very difficult and painful to walk. But massage and leg activity are the key to resolving it. It can get worse before it gets better due to the extra activity and that’s when I get the compression socks out and raise my leg.

I think it’s important to find out what works for you and if it persists, you’ll know what you have to do to resolve it. I am lucky to have a mild case but I have experienced a lot of pain and discomfort during times when it flares. For me, I can usually predict it will happen after playing golf and walking the course several days in a row, after a night or two of having more than a couple drinks, or after traveling on an airplane or spending a lot of hours in a car.

Good luck with it. It sounds like you’ve found some things that work already.

Gunner
Posted 3/8/2021 8:13 AM (GMT 0)
Hi, Steven here...
You were asking about compression garments. My friend, who's an athlete wears it and found it comfortable and the swellings are getting better.
You can refer to this article on compression garments: https://www.garnersupply.com/articles/medical-articles/medical-compression-garments-5-reasons-to-consider-before-shopping.html
There are several compression garment myths on the internet. I hope this article gives you a proper understanding of how to treat lymphedema.
Posted 3/29/2021 11:57 AM (GMT 0)
Update on my leg swelling. I'm wearing the support hose during the week while I'm working and don't really have the ability to elevate my leg. On the weekends when I'm more active and can elevate the leg I'm going without. Yesterday from when I got out of bed at 7 until I measured again at 2 my calf increased in size by 1/2" and my thigh went up by 3/4". When I first noticed the issue my calf had increased by 1 3/4" and my thigh had increased by over 2" in size. It seems things are getting better overall and I hope my days of wearing a support stocking are limited.
Posted 3/29/2021 3:23 PM (GMT 0)
I had 29 nodes dissected...and developed lymphoceles about 3 months later...presented with low grade fever and malaise...I never heard of lymphedema and lymphoceles in a relationship(but I just play a doctor on HW like the rest of us} lymphoceles normally take a longer time to develop and are symptomatic in their own way{ different from lymphedema symptoms) and yes as Saipan said self resolve...if not they can be lanced by urologist in his office....It is common upon recovery to have some sort of compression device on your legs that pulsates while you are recovering at night after a long day of walking and hydrating....since one of the selling points of robotic prostectemy is a short hospital stay,,,I suspect the trade off could be minor lymphedema based on such...nothing compared to the type of lymphedema associated with breast cancer treatment...I was treated at a teaching hospital U of Washington,SEA...it sounds weird...teaching hospital... au contrair...the surgeon does the heavy lifting...with students carrying the water buckets of other "stuff" closing up nodes dis and dat...lidat(like that)...Oh the Surgeon may step out now and than for a shot of vodka ( I'm kidding Doc I;m kidding) my open surgery was 4.5 hours long yet after 60 hours in hospital my wife and I walked 2 miles home on the beautiful campus of "the Dub"...on the whole...my time in The environs of U Dub...was...well...mystical...I will not edit please use context for the "dis and dats"...logo
Posted 3/31/2021 9:07 PM (GMT 0)
Ok no challenge there...Taught I was losing my mojo...slip sliding away...hit the road jack...slip out the back jack
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