Genital Lymphedema

[Lombardi24]

Has anyone experienced swelling post radiation in pelvic area. This has me completely freaked out. Rad onc at Sloan Kettering in NYC says it's very rare and they don't seem to have a plan of action for dealing with it. I am reading horror stories about the loss of limbs etc due to this.

[Beauxman]

I have had that problem since 2015. It started a few months after my pelvic radiation and has been stable in the past year.

[Lombardi24 in reply to Beauxman]

I worry about cellulitis or other complications. Did they give you meds to combat it?

[Beauxman in reply to Lombardi24]

I scratched a bump and made it bleed and developed cellulitis once in 2015. After the pills fixed it, my doc gave me an extra course to keep on hand, so I can treat quickly if it happens again. Fortunately, it has never recurred.

[Dr_WHO]

Yes, some of the things you read and pictures on the internet are scary. However, please keep in mind that those are the extremes. I equate it to looking at life expectancy for prostate cancer, which is never a good thing to do.

I had surgery where they took out the prostate and 14 lymph nodes and 38 rounds of radiation. I have swelling in the inner thighs, above the groin area up to my belly button. I think the swelling is due to both surgery and radiation. Not that major of issue now but the swelling is slowly getting bigger and is noticeable. From what I have read there is no real cure for lymphedema. There are massage treatments and wraps, but they do not have a good wrap for the pelvic area nor for the upper thigh. They say exercise and weight control can help slow it down.

Some hospitals have clinics which specializes in this issue. Again not a cure but a way to manage it. You may want to look into that.

[Ran2599dy in reply to Dr_WHO]

I am a former patient of Dr. Myers and had radiation/ lymphedema like he did. He put me on Pentoxifylline 400mg 2 per day (1 M/N). Also the supplement Toco-Sorb 375mg 2 per day (1 M/N). I was surprised how well it worked but it took about 8 week to get my lymphedema under control. Research Pentoxifylline and lymphedema. Several good studies on the subject. Does not help everyone but worth a try.

[Lombardi24 in reply to Ran2599dy]

Thx!

[Hazard]

I developed lymphedema after after RP surgery in 2015 (20 lymph nodes removed). Scrotum the size of a very big grapefruit and a saxophone penis. Very scary stuff.

My uro didnt have much to say but my sister in law is an oncologist (O&G, so she doesn't see a lot of prostates) and she gave me some good advice.

1. Walk. Keep walking. Lots of walking.

2. Lie on back and peddle legs in the air.

Fortunately it cleared up after a few weeks. I had IMRT 12 months later and was lucky that there was no recurrence.

Hope you can get it under contol.

[Lombardi24 in reply to Hazard]

Thank you

[Hidden in reply to Hazard]

Ouch. Yes that sounds very scary. Glad you got through it.

[leswell in reply to Hazard]

Great advice from your sister in law. Les has his bilateral lymphedema under control, but I doubt it will ever “clear up”. The worst right now is a gurgling within a fibrotic (I presume) capsule above the groin; it comes and goes and makes loud noises. Nothing genital yet and, thank God, no hospitalizations or sepsis. Dr. Who is right that it is difficult to wrap the upper thigh and abdomen. My husband is wearing compression pantyhose 24/7 and does lymphatic massage. We have a local lymphedema physician whom we see every eight months. PCa is the primary focus as it must be for you. Leswell had neither surgery nor radiation and still has lymphedema which had to result from either chemo, TRUS, or leuprolide injections. Rare, I think. I need to peddle my own legs. The bike is in the basement which is cold. We have a real double whammy, don’t we! Thanks to you and everybody for including this issue.

Mrs. S

[MrsEricE]

I am a physical therapist and I specialize in treating lymphedema. I have primarily seen it in breast cancer patients with swelling in the arm or the chest wall, but have had a few men with prostate cancer. I would be happy to answer any questions and give you some simple things you can do to reduce the swelling and ideally prevent it from getting any worse. Please let me know if you want more information.

[Lombardi24 in reply to MrsEricE]

Thx for the reply, MrsEricE. It isn't extensive and the swelling has gone down some. Doc gave me methylprednisolone...4 day course. Am also wearing tight briefs. Any help would be appreciated. Thank you.

[MrsEricE]

I have a handout I can send you. Please write me at [e-mail] and I will send it to you.

[Lombardi24 in reply to MrsEricE]

Ok

[Lombardi24 in reply to MrsEricE]

Thank you