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Post surgery 3 years - Lymphodema stage 1?

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Posted 8/9/2017 3:41 AM (GMT 0)
Hello,
I have just passed the two year mark since a complete prostatectomy where quite a few lymph glands were removed as a precaution, as the cancer was confined to the prostrate. Since the operation I had a pronounced watery bulge on the upper, inner thights that were the result of the lymphs being removed.

For the past year I have been getting swollen feet when sitting for long periods at my computer, and it has been coming and going. Lately though, it has been all the time but I wake up most mornings and it is gone - before I start sitting again and it is back in an hour or two. I am 63, fit and active, not overweight etc and some research I have done on the net indicates that I may have stage 1 (of 3) lymphodema.

My question is how is this treated - are there certain drugs prescribed for this swelling of ankles and feet? Are there alternative methods too. I think that I eat right and avoid too much salt or sugar in my diet, and that would minimise swelling.

But it seems that I need to drain the lymph glands or whats left of them? I notice that there are self help lymph massage videos online, but I am having trouble finding something specifically for men and the type of technique used, if indeed that for someone like me, I have very few lymph glands left in my groin area?

thanks for your attention!

Post Edited (manvantara) : 8/8/2017 9:45:14 PM (GMT-6)

Posted 8/9/2017 1:18 PM (GMT 0)
Had the same problem after 6th chemo treatment. Swollen thighs, swollen calves, swollen feet. Couldn't walk to far. MO sent me over to therapist who fixed me up with thigh high prescription compression stockings, exercises, told me to elevate my feet above my heart. I was told by them I was stuck with it. Will not go away, and be careful when you fly. Geez, what's a person to do? Lo and behold after dealing with it for about two weeks it is all but back to normal.

MO told me it was result of lymph nodes being removed. Still a little bit of swelling, hardly noticeable unless you arte looking for it. No where near enough for stockings. I do wear those low cut socks that come just above shoe. Don't like the indentations regular socks leave.

Oh well, nobody said this was going to be easy.
Mr. Bill
Posted 8/9/2017 1:28 PM (GMT 0)
thanks Mr Bill, useful tips there! cheers
Posted 8/9/2017 2:20 PM (GMT 0)
Lymphodema is real side effect of surgery and can be a problem as it is difficult to treat and basically can not be cured. It also appears to be not seriously discussed prior to surgery. I don't recall any of our members stating that their surgeon discussed the issue before deciding to operate when removing nodes.

My wife has twice had breast cancer on the same side that each time required removing underarm nodes....half the first time and half the second time, so she now has no nodes on her right side. She undergoes physical therapy several times a month and wears an arm length compression sleeve 24/7/365. She has been doing this for nearly seven years and will do so for the rest of her life.

I did not use surgery, but due to the high risk dx did have the pelvic lymph nodes radiated. Thankfully, the radiation did not damage the nodes and I have no lymphodema. A few years ago a friend decided to have seeds and IMRT to treat intermediate risk PCa. His urologist insisted that he sample some nodes surgically before the treatment even though radiating the nodes was on the table to consider. The nodes removed were negative, but now he has lymphodema as a result. Thankfully the seeds and IMRT stopped the cancer and he has no negative side effects from that, but wears long socks now to manage the leg problems. The urologist never cautioned that this could be a side effect of the surgery.
Posted 8/9/2017 2:49 PM (GMT 0)
What JNF said.

My surgeon removed 44 lymph nodes (!) and I've had leg lymphoedma ever since. Compression stockings help a bunch and I use a pnuematic compression garment daily which really, really helps.
Posted 8/9/2017 3:20 PM (GMT 0)
yep, they are a bit carefree with the nodes! I have read and heard of many futile excursions into the node area. I wonder how many there are in the groin region, I am trying to figure out how many I have left!
Posted 8/9/2017 5:30 PM (GMT 0)
Lymphoedma didn't start until after 6th chemo. Had surgery 6 1/2 years prior. Also on Lupron/Zytiga and Prolia. That is not say it will not come back, just enjoying the time I might have without it.
Posted 8/10/2017 2:17 PM (GMT 0)

manvantara said...
yep, they are a bit carefree with the nodes! I have read and heard of many futile excursions into the node area. I wonder how many there are in the groin region, I am trying to figure out how many I have left!

Apparently there are more than 44 nodes smile .While I'm glad my surgeon removed the nodes (he was concerned about cancer being outside of the prostate capsule), there was zero mention about side effects and mitigation of the lymphodema. Even my RO completely dismissed my puffed up legs. That really yanked my chain.
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