Post RPLND Questions

[Mickey]

Hello All,

I have been reading this forum every since I was diagnosed with left testicular cancer. I had my left one removed in Aug 2011 and put on a close watch and now May 8th 2012 I had to have a L-RPLND.

After a week in hospital I am home now and I have noticed a lot of fluid build up in my scrotum. The doctor says this is normal but its starting to worry me. Has anyone else had this? How long does it last?

I also have major backpain but I am guessing this is normal to?


Thanks

[Scott]

I experienced the scrotal swelling, as well, but fortunately it didn't last long -- worst for a couple days if I remember correctly, and then it improved pretty quickly. The lymphatic system gets temporarily very confused after this surgery.

The back pain may take a bit longer, so take it easy.

[hismom]

My son had open RPLND and left Sloan-Kettering with his scrotum swelled to the size of a grapefruit. Its an unfortunate side effect, but not dangerous. It took a couple of months for his to get back to normal. That was November 2009 and he is doing great now - no more issues.

[Mickey]

Couple months omg.... Does it go down over time? Is there anything I can do to make it go down quicker? I noticed my legs have started to go back to normal size.

Thanks

[zbot]

oh yeah. I had to duck waddle for two weeks to keep from chaffing i was so swollen. it's a really weird side effect. It went down after a few weeks don't worry about it

[zak0691]

I had an RPLND last year but no scrotal swelling. Until reading this thread I did not know it was a common side effect.

But I DID have major back pain as well! For me it was much worse than the pain of the actual incision. I'm used to popping my own back regularly and of course couldn't after the surgery and to make matters worse the hospital bed I was in for a week was very uncomfortable. It probably took a least a week or two after returning home that it finally started to get better but I sure was miserable from it for a while.

[Mickey]

Ya the back pain is worse then the surgery for sure!

Starting to feel a bit better today but still find myself with water build up in the back of my thorat every time I eat.. Anyone else had this? If so what helped? If anything.....

Thanks guys sorry for all the questions it's just a real hard time for me.

[Mickey]

So the past few days I have been walking more and more. Is it normal for my belly to get so hard?

[PatricksMom]

This is my first time in one of these forums, so please bear with me if I mess up!
Mickey, my son Patrick had his RPLND on May 8th as well. Where did you have yours? We were at IU under the care of Drs Foster and Beck. They were awesome! Unfortunately, they had to take his L kidney as well. The pathology showed necrosis and teratoma, so now we are going to consult with a Thoracic surgeon, Dr Kesler, and Dr Einhorn regarding multiple nodules in his lungs, as well as follow up with Dr Foster on June 13th. Patrick has low back pain as well; not sure why, but the thing that concerns me most is his weight loss. Right before his surgery he was at 135#, now 4 wks later he is at 117#. energy level is low, and appetite is low, although it seems to be getting better. Has anyone else had this experience? Is it normal to experience this much weight loss post-op? I'm a little worried, but hoping to get some answers next week.

[zbot]

it's natural. He just had massive abdominal surgery, and i'm assuming they didn't let him eat full solids for at least 5 days, and his appetite isn't probably what it used to be. He also has lost some muscle from lying around all the time. I lost about ten pounds post RPLND and got it right back once I started eating and working out again, he'll be fine. I'll be at IU for a june 11th appointment with einhorn, hope yours and mine go very well

[Mickey]

Hello PatricksMom,

I am in Canada and had my op done in Toronto at TGH. I am about 4 weeks post op now and I still have back pains. Its getting better the more I walk the less pain I have the next day. I find laying around to long makes my back hurt even more. My appetite is weak (before surgery I would eat non stop) but i am sure it will improve over time. My energy level was very low but has improved over the past few days. I returned to work (light duties) and I honestly think that is what has improved my overall energy level.

Just try to support your son and I am sure his energy level and appetite will return! I also lost weight and am still down about 20 lbs after my surgery and that was the hardest part since everyone notices that right away. Be strong!

[Sparty]

As I prepare for my RPLND I'm curious what causes the pack pain? Thanks.

[Mickey]

Not sure I am going to ask my Doctor when I seem him next week but I think it is the lack of movement the muscles get weak. After all for the first week you are not moving to well. I am sure the removal of those nodes causes pain too as it has to be attached to something back there.. I will get an update from my doctor next friday but I guess you will be done with your RPLND.
Where are you having it done at?

[Sparty]

Indiana

You were hospitalized for 5 days - is that what the Dr. told you? I was told three days in hospital. Sounds like you're doing better so that's good.

[Mickey]

I was in for 7 days. Thr rplnd went well but had internal bleeding so was re-opened and patched up. Because of that I had to stay a bit longer oh well..

[PatricksMom]

Thanks, all of you for the reassurance about the post op weight loss! Sometimes I worry(privately) too much about the worst case scenario, but I know I need to be strong for Patrick. Thanks, Mickey, for the encouragement! And Sparty, you are in good hands at IU, so I'm sure it will go well for you. Patrick was told 3-5 days, and he stayed 4 days. He would've gone home in 3, but he had a fever that morning so they decided to keep him, which was fine, because then we got the pathology results back before we went home. And zbot, looks like we'll just miss eachother at Dr Einhorn's office, but I too am hoping for good news for you and Patrick!

[JoeysMom]

My son Joey had his RPLND on April 27th. He had 37 lymphnodes removed, one was necrotic, 5 were teratomas. His back hurt terribly also, but that subsided after 2 weeks. He started to feel better on his 3rd week after surgery, he was getting discouraged but then turned the corner over night. He lost 35 pounds since the surgery but is now feeling fantastic! He actually walked a 3 mile walk for brain tumor research on Saturday, the day after he had his port removed! His first set of tumor markers wer negative and he has his first post RPLND CT scan scheduled for July 19th. Joey looks like a million bucks these days, very healthy, his hair is coming back in and his beard is back in full force. Hang in there you guys, I can testify that it gets better, in a matter of weeks you will be feeling great.

[Yoda]

Hello everyone,
First post, but I have been reading a lot of the great info on this site for a few weeks now.
Had my right testicle removed 10/21/11. Had my RPLND on 6/7/12. Just arrived home yesterday. Dealing with the lower back pain, bloating and a very swollen right foot currently. Still trying to get a handle on what I need to do to deal with each of these. Walking, sitting, reclining, feet up, feet down. Seems like certain things help some problems while making other things worse. Hoping everything slowly improves over the next few days. Getting staples out next week and will hopefully have the pathology report back at that time as well.

Thanks for all the info and support you guys provide.

[DBR82]

Sorry about the swelling of the foot. Hope that heals soon. Because, in my case, I found that walking around the neighborhood helped just as much, if not more, than any pain med or position on the couch could help.

[evstar18]

Hey Mickey,
Did Dr. J. Do your rplnd? the reason I ask is because he might be doing a pc- rplnd on me depending on a few things and I was wondering if you were impressed? I have loads of faith in him tho. Im from Toronto as well

[BigBoss32]

Had my RPLND done June 1. I would say for me the worst has been the restlessness at night. It seems I can only stay in one spot for a couple hrs before I get sore. So I rotate from bed to two different couches during night. The other issue is stomach distension. Called the docs and they said it is normal and all part of the process. Wierd thing is my weight is up since right before surgery. Anybody have that issue?