RPLND - How bad is the Surgery/Recovery?

[Dave40306]

Hi all,

Damn, this is strange. I usually visit and join forums to discuss my hobbies and interests with others that have the same and now I'm on one to discuss my recent stroke of bad luck.

Diagnosed with TC on Monday, 4/6/06, and will have I/O early next week since I'm banking sperm before the surgery. My AFP level was 2500+ but HGC was normal. After all of my online research, it looks like I will get diagnosed with a non-seminoma after pathology report (Since I read that AFP levels can't be elevated with a seminoma). Went for the CT Scan and chest x-ray today and final consult with urologist tomorrow.

I'm really hoping for the best with all of this but I fear that I will need either the RPLND and/or chemo. Honestly, I don't know which I should be more afraid of.

For those of you that have had a RPLND, what was it like for you, where did you get it done and what was recovery like. I really don't like the idea of having a huge scar down my abdomen but I also would rather live.

How does the surgery compare to the short/long terms effects of Chemo?

Any info/advice regarding either treatments - good or bad - will be much appreciated.

Dave

[danebert]

I went through both so I can'offer my opinion. Chemo isn't all that bad. Its bark is far worse than its bite. If I had to compare it to something, its like the flu. You are tired all the time after each cycle, but you gradually get better. ( The only bad days are the two or three following each cycle) The nausea is controled quite well with a combo of Aloxi (sp.?)Zofran, and ativan. Its not fun but its not impossible. The RPLND was a cakewalk. I had a post chemo RPLND with Dr. Foster ( INdiana University) ans was out of the hospital in 3 days. There was no NG tube. THe worst part was the catheter. THe pain was really not that bad. In fact, some have said they had a harder time with the I/O which, in my opinion, was nothing. Just good drugs and a few days of R & R.





If your level is 2000 I/U you might need chemo. However, others with higher numbers have returned to normal after the I/O, although rare. The pathology will dictate how treatment will progress. If markers return to normal after surgery, you will be offered three choices, ( or two depending on where you are treated ) Surveillance, RPLND, or adjuvant chemotherapy. The last choice is controversial. If the markers remian elevated, you will proceed directly to BEp chemotherapy. If the markers return to normal, and there is a limited amount of lymph node involvment, you will be offered RPLND or chemo. ( Or both based on the pathology of RPLND ) THe last outcome could chemo followed by the RPLND, if they find TERATOMA in the pathology after I/O and there arew residual masses after chemo. After your I/O call INdiana University Cancer Center for a consult. THe will help direct further treatment and offer you invaluable advice. Good Luck and let us know what happens.

[jtyler]

I did both as well, and I would have to agree that chemo is not as bad as the concept of chemo. For me, luckily, the nausea was minimal, but I scaled back my diet a lot to pre-empt any possible stomach upsets. Besides that, the fatigue was the big thing -- I didn't do much or go many places while I was going through treatment, and actually found it good to relax and save some money, weird as that sounds.


As for the RPLND, in my opinion it depends where you're planning on having the procedure done. It is a big deal, surgery-wise, but again, once you get over the initial awkwardness of being a little bloated and not eating much in the way of exciting food for a while [at Sloan-Kettering, they put me on the 5g fat diet for 2-4 weeks post-op], it's not so bad. It definitely gets the job done as far as its thoroughness and effectiveness, but it isn't something you might want to do if it is not necessary.

[Scott]

I haven't been through chemotherapy, but you can read about my experience with L-RPLND in this thread.

(I see when I stopped posting in that thread I was still only back up to 140 pounds! I'm up to 155 now and need to start cycling more to drop back to my preferred weight of 150. )

[benp]

I did both too

Heya

I had the RPLND before the chemo on the grounds that if it finds very little in the lymph nodes (less than 3 involved, less than 1cm each, no spread outside the nodes) then that is considered an 86% chance of cure. This comes from a paper from MSKCC where my urologist trained.

So, i did the RPLND hoping that would be the case. As it turned out I had very little in the lymphs (1 only @ <1cm) but there were tiny deposits in the veins of the spermatic cord. This they felt meant time for chemo. You can look at this outcome 2 ways

1) it means I have doubled up treatment. I could probably have gone straight to chemo for the 95% cure
2) but by doing it the staging is precised. From this I mean the doctors know exactly what was there and now the chemo is mopping up microscopic deposits rather dealing with lumps of the stuff.

net result is i feel overtreated but at the same time i feel my chances of full recovery are about as good as you can get.

if you are looking at rplnd you should also make sure they do nerve sparing and also that you consider the issue of terratoma post chemo.

as far as recovery went, I was in hospital for a week following rplnd. i had a bloated tummy for a week and a half after that. It took 3 weeks to be abloe to stand up straight so i had a pretty sore back thru it all. now after a month its pretty much fine. i still need to assist myself a little in sitting up from laying down and I can't twist around fully. the scar is very obvious still but that I am told goes. all in all i found the first few days in hospital the worst but at least each day gets a bit better.

i've now done one round of chemo which i think i have been taking worse than most. i've thrown up 4 times this week and feel like throwing up most of the time. i've averaged a sandwich a day. persoanlly i find it a lot harder becuse everyday you get worse rather than better. it is a lot like the flu only your head is clearer because of the steroids which means you have a lot of time to sit and ponder how crap you feel. sorry to put in a bad word for chemo but I hate it.

anyway, best of luck hope all this helps

: b

[Dave40306]

Well, here I am, one day after the I/O recovering nicely (I think) from the surgery. Next appointment with the Urologist is next Wednesday and I get to start seeing the Oncologist soon too.

Thanks for all the replies so far. I'll try to post here with my progress from time to time.

Dave

[Jens]

Hi Dave.

I did 3xBEP and I'm pleased to be able to join the choir of guys saying that chemo wasen't that bad. It was much easier for me than I anticipated (I threw up once).
It has it's longterm costs though, I'm sure you know of some of them by now, but do ask if you want to know more. That's the downside. The upside is that its likely to cure you!
I haven't had RPLND so I won't utter myself on that subject, but when you get the pathology report, the percentage of embryonal carcinoma and presence of vacular invasion (or not) will have a huge impact on the feasibility of PRLND.

Best wishes
Jens

[utme93]

Had both - didn't care for either one

Neither was that bad either. My employer was incredible though the whole thing and that helped a lot(can't imaging what it would have been like if they had just said take time off without pay)....they didn't even let me use vacation time...just said take the time I need (of course that made me want to get back to work as soon as I could as I'm the type to reward loyalty).

RPLND - 5 days in hospital and wouldn't let me eat for 3-4 days... so I had a frienk sneak in some food....That was the most brutal part. It was only my second surgery - first being ochiectomy -( which was a breeze except for the fact they had to cut though som muscle tissue which caused serious problems when sneezing - yeeowch!). Waking up from the RPLND - I was in a lot of pain and absolutely nasious. I told them that and they upped the dose of pain killers and gave me an IV of gravol or whatever they use and I was fine. The catheter removel was rather uncomfortable burning sensation...but brief. Following the surgery it is uncomfortable to wear pants for several weeks....and the scar is always there (mine was done by a really good surgeon - so it is minimal).

Chemo - again depends on your work situation even more. A lot more time off...3XBEP I had takes nine weeks. The first week of every cycle you get EP every day and on Tuesday you get bleo. The following two weeks you just get bleo on Tuesday.

I took off every day that I had chemo and had tried to go to work on the other days (had hand cleaner that they have at the hospitals everywhere and told everyone at work that if they were sick to let me know (by email) and not to come by my office. I never got sick and I usually do get the flu every year.

Anyway - I never threw up during the entire chemo process (I drank a LOT in university so what most people called nausia - I called Saturday morning!) but felt increbibly tired when my blood counts were low. Hair all falls out ...but I'm not a vain person and have a rather brutal sense of humour so anyone who took a jab got it much worse than they gave. Still have problems with feeling in hands and feet (Both are slightly swollen at times) and I have joint pain which I have talked to the residents about and they say it is not a common side effect (gave me advil - apparently they didn't understand what I mean by PAIN!).

Anyway hang in there - the lasting effects of either are not bad...it just takes time...my biggest fear was money problems...and that turned out not to be a problem.

hope everything goes well for you

[TCat37]

Well, I had my RPLND done 8 days ago. I spent 5 days in the hospital after the surgery and was not allowed to eat anything for 4 days as your intestines go to sleep when they lift them out of your body. I was told if I ate to soon I would throw up and it would cause severe pain. Coughing and sneezing were a killer and I had fluid in my lungs from the surgery which I received breathing treatments for while in the hospital. It caused me to cough up the sputum that was in my lungs, not fun!

The pain was pretty bad. I have had about 4 surgeries prior to this one including a lumbar disc fusion. They put an epidural in which gave me local anesthetic and hydromorphone, better known as dilaudid. I was on the pain pump for 3 days and then they switched to morphine and then oral meds.

It is day 8 and I am still very nauseous. I have not eaten hardly anything since the operation and I feel just awful from the anesthesia. My smell and taste are completely out of whack and I get migraine headaches. I'm not sure what type of anesthesia they used but I never felt this bad after any of my other surgeries. The doctor told me it could take months for my taste and smell to return to normal. The pain has pretty much subsided but I still walk a little bent forward. When I return to get my staples removed in one week I will find out the result of the pathology report from the lymph nodes. I remember the doctor telling me he froze some of the lymph nodes and they looked pretty good so I am hoping that all is well. They said they found a couple of spots on my lungs from the CAT scan I had done during pre-op but they were to small to tell what they were. This also worries me a bit. The AFP tumor marker numbers were back to normal based on the pre-op blood work that was done.

I hope this will be it for the fight besides further monitoring. I will keep you posted.

[Kat]

Glad it's over!
Remember to use a little pillow to hold over your guts for coughing/sneezing/getting up/seatbelt in the car, it helps ease the pain a little bit.
It does suck, but the more you can walk around a bit at a time, the faster you'll feel better. Gets those bowels working, which will reduce your bloat and nausea, and let you start eating a bit more normally.
Keep up the good work!!!

[Itsadeepbluesea]

For me personally I found the RPLND to be much easier then the chemo. That being said I had an easy time with the RPLND (probably because I handle pain well) where as the chemo really kicked my but. The main thing I found with the RPLND is to not try to over do it to quick and listen to your body. But at the same time get up and walk. Walking is key to RPLND recovery and I was up the day after my surgery. The toughest part is not laughing, coughing or sneezing as those are quite painful. My wife made me laugh by accident one day and I had to make her leave the room cause I couldn't stop and it felt like someone was stabbing me in the stomach. All that being said I found it not to be terribly difficult, it is by no means a walk in the park but with the pain meds available for you it shouldn't be to bad.

[paul_kayl]

Hi everybody,

I was diagnosed with TC about 8 months ago. I had an orchiectomy, followed by 2 rounds of chemo, followed by an rplnd.

The orchiectomy was really not bad and the chemo was awful at times but all in all, not so bad. What made the rplnd so difficult for me is the scar (as vain as that may seem).

I only had the procedure done about a week ago and I'm very concerned with the way the incision is healing. My bellybutton seems raised and the surrounding area seems bloated. I keep thinking that mine won't heal properly, so I was hoping that someone could tell me if all of this is normal? Can I expect my bellybutton (which is now an outie) to recede and can I expect that the rest of the scar will heal properly? Right now, around my bellybutton, things seem mis-sewn. I'm just hoping that the process of healing and bloating (both temporary) are responsible for that.

As for pain, the pain of the rplnd was severe. I remember waking up in pain on a few occasions. What I've realized through all this is that the pain is never the worst part. As much as things can hurt, you'll always be able to look back on the experience of pain. Unfortunately, scarring keeps me looking down.

Thanks in advance to anyone who responds,

Paul

[Scott]

Paul, things should improve with time. There are a few photos at various points after surgery in this thread.

I'm wondering about your treatment history. You had adjuvant chemotherapy and then RPLND several months later? What was the reason for the RPLND now, and do you know yet what was found?

[David1969]

Paul

I have had 2 RPLND's the bloating etc is not uncommon in my expererience, it took nearly a month for my first one to settle down and for the bloating to go, the second one was a lot better.

Dave