RPLND Surgery - Recovery Tips

[TX Cale]

My son Cale will be having his open RPLND surgery on Aug 30th. We were at first set on doing it laparascopically but the surgical oncologist convinced us this wouldn't be the best option for Cale. He wants to be able to see and feel all the nodes around the one(s) in question. And seeing as he's barely 18 - we want the better odds of the nerve sparing procedure. The question I have for you on the forum is - what can we (his parents) do to make his recovery easier, quicker, better? I know he's supposed to "walk, walk, walk" but what else can you recommend in the way of food, showers, clothing.....

He's requested a full size bed (he's in a twin now) because he doesn't want to roll over and fall out - we'll get him one this week! But any other advice and words of wisdom would be appreciated. -- Thanks

[Kev332]

Welcome to the forums TX Cale.

It looks like you are already doing things to help out your son by coming to this website and doing research,,,,, I'm sure he will greatly appreciate that. I'm sure there will be many other memebers here who will give you some tips and suggestions but here are my 2 cents..

Its definitely an akward recovery for this surgery, given the placement of the incision.. I know for me, any sort of tight fitting pants were definitely out of the question. I remember I cut the waist of a pair of my boxer shorts so that they weren't tight around my body,,, and i wore mostly loose fitting sweat pants for a while. Yes, walking is really good for your body to get things moving again, so going for walks is a must. But he should also take it easy and REST.

He probably wont be able to lay flat on the bed while sleeping, so make sure he has plenty of pillows to stack up behind his head and back area.. (I couldn't sleep laying flat, or on my side for a while). I had one of those medical type pillows that sort of looks like a "wedge" that I used and came in very handy.

Hmm, lets see, what else,, oh, my bed at the time was sort of high off the ground so it was hard to get in and out, so i got a small step stool so that i could step on that and then get into bed.

They also say to stick to a low fat diet after surgery (and even prior to). I think there are other posts on this site refering to diet pre and post RPLND.

Just try to keep him comfortable (which might be tough in the beginning) and take it one day at a time. I'm sure he'll give you an idea of how much help he needs and when.

Take care and i hope everything goes well.

-Kevin

[Fish]

Hi:

I'm sorry to hear your son needs the RPLND. But at his age he should do quite well and recover quickly. I had mine when I was 26, and I did fine.

Some tips:
1. As you said, walk, walk, walk.
2. Walking will be easier if Cale uses the iv pain med dispenser at the rate the doctor selects. It doesn't pay to "tough it out"
better pain control=better mobility=faster recovery.
3. Do the breathing exercises as often as possible. It keeps your lungs clear, especially since the pain meds will decrease the rate and depth of respiration.
4. Cough - this will hurt a lot, but it's improtant to get rid of any mucus. Have him hold a pillow tightly to his abdomen - this helps brace the incision and decreases the pain.
5. If the doctor does not order stool softeners, request them after they start to hear bowel sounds. (it can take a day or two for the intestines to start to move again). Straining to defacate is painful and can tear the incision or cause hemmorhoids.
6. Eat small light lowfat meals for the first few weaks. Multiple small meals are better that one big meal.
7. Showering might have to wait a few days, especially if they have a drain in under the skin.
8. Be EXTREMELY careful not to lift anything over 5 lbs - for up to two months - but the doctor will give you a more accurate time frame. I was too active and developed multiple hernias along my incision. These eventually had to be repaired with an 6"x10" piece of gortex mesh - not fun at all.
9. Probably no driving for several weeks.

Most importantly don't let him rush the recovery, at his age he'll recover soon enough. This is major surgery. It can take up to 6 months to fully regain strength and endurance, and teenagers have been known to be impatient.

You will all be in my thought and prayers this week. Best wishes.

[Kev332]

something i forgot to ask in my first reply,,, have you asked your son's surgeon how many RPLND's he has done? As i'm sure you are aware, only an expert who has dont this surgery many times should be operating on your son. If the surgeon has only done a few, i'd look for a second opinion.

Also ask the surgeon how he will be closing the incision.. My surgeon used NO external stitches or staples and opted to use surgical "glue" on the surface of the skin which has left a very minimal scar which has healed very well. (there is a pretty long thread about scaring/stitches/staples on this site also).

Make sure your son has stuff to keep him busy while at the hosptial after the surgery, ie: ipod, a good book, crossword puzzles etc... I also had one of those sleeping mask type things you use to keep the light out of your eyes while sleeping,,, this helped out a lot given the fact that nurses will be coming in and out every few hours to check his vital signs etc... I also had ear plugs. I'm a light sleeper, so it was tough to get a good nights sleep in the hospital.

[UK Mart]

Hmm, lets see, what else,, oh, my bed at the time was sort of high off the ground so it was hard to get in and out, so i got a small step stool so that i could step on that and then get into bed.

Be careful what you use though... I was using an upturned plastic storage tub until one night, about 4 days after my I/O, I was stood on it preparing for the step off and, surprise, surprise, the ground disappeared from beneath me... i just went straight through it!

Not too much damage - bit of hurt pride(!) and sore ankles - luckily the plastic just shattered, no cuts - oh dear!!!

Hope all goes well for Cale

[willgetoverit]

Hi,
What were the reaons that your oncologist preferred an open RPLND over a laparoscopic one?

Same boat, need opinion.

[Scott]

Welcome, willgetoverit! What is your situation?

By the way, if you search on the term "L-RPLND," you'll find a few threads that discuss open vs. laparoscopic RPLND pretty thoroughly.

[TX Cale]

willgetoverit -

We consulted with a laparscopic surgeon first and with the open rplnd (oncology surgeon) second. Due to the exact location of the lymph node which was increasing in size - the laparscopis surgeon was not confident that he would be able to spare the nerves and would therefore cause Cale (who just turned 18) to have retrograde ejaculation (sterility). We therefore went with the open rplnd when the surgeon explained that his technique would allow him to see, and move things around and out of the way, in order to retrieve the lymph node in question and all the others and spare the nerves.

Cale had his open rplnd surgery two weeks ago and went great. He stayed in the hospital for 3 1/2 days and is now walking around, eating normally, and soon will be driving again. The doctor said that he has recovered very quickly, but then again this is the first time he's performed this surgery on one so young and skinny.

When we first discussed surgery, Cale was strictly for the laparscopic - and who wouldn't be, sounds great - less invasive, less scars, quicker recover. And we would have done it that way if the sterility factor hadn't been the big issue it was.

Of course whichever path you decide on, and it all depends on each individuals situation - do the sperm banking thing and good luck.

I'd be happy to answer any other questions you might have. And if you want to speak to Cale directly - just let me know.

-Cale's Mom

[Fish]

Glad to hear Cale is doing so well.

I have a friend who is a retired thoracic and vascular surgeon. He told me he would NEVER have anything done laproscopically. But then when he learned his techniques, there were no laproscopic procedures.

[willgetoverit]

Tx Cale,

Congrats! on your son's speedy recovery. Isnt it awesome that he will be behind the steering wheel soon?

So, as I understand, your doc didnt decide against the L-RPLND because he thought it probably wont work in Cale's specific case, right?

willgetoverit

[TX Cale]

willgetoverit

Dr believed he couldn't do the L-RPLND nerve sparingly in Cale's case.

[Davie]

TXCale,

Firstly congratulations on your sons sucessful RPLND and quick recovery. I've got mine next week and hope I can get out of hospital in 3.5 days too.

Out of interest how did they determine he was OK to go home after 3.5 days?Is it determined by removal of the staples and time taken to get his bowels working again?

Davie

[TX Cale]

Davie,
The surgeon used internal dissolving stitches and closed the outside with a super glue and therefore no staples or stitches to remove.

In order to get out of the hospital Cale had to be off the pump pain medication, able to eat and keep the food down, and have a bowel movement. In order to do the last two - he did lots of walking. If he was awake - we tried to get him up and walking the halls.

[JohnLinleePrath]

Young and skinny

Cale had his open rplnd surgery two weeks ago and went great. He stayed in the hospital for 3 1/2 days and is now walking around, eating normally, and soon will be driving again. The doctor said that he has recovered very quickly, but then again this is the first time he's performed this surgery on one so young and skinny.

My family and I are going to Indianapolis (from Austin, Texas) to meet a doctor who supposedly has mad skills at open rplnd surgery. The surgery is happening in four weeks but my family and I are trying to have them do it a little sooner. I just wanted to say your story is very encouraging and I hope my experience goes as well as Cale's because I am also very young (16 years old( birthday is four days after current date of surgery)) and skinny.

[Paul54]

My family and I are going to Indianapolis (from Austin, Texas) to meet a doctor who supposedly has mad skills at open rplnd surgery. The surgery is happening in four weeks but my family and I are trying to have them do it a little sooner. I just wanted to say your story is very encouraging and I hope my experience goes as well as Cale's because I am also very young (16 years old( birthday is four days after current date of surgery)) and skinny.

I can't begin to tell you how unfair this is, but you will get the best care possible. Many have been down the same route and ended up just fine. Before you know it, this will be a dim memory. You have so much good stuff ahead, don't let anything get in your way.