onward to RPLND

[shabby]

Hey all,

Updating the journey and have a question or nine.

To recap, Stage 2A EC, Right I/O, 3xBEP completed mid-december. Markers normal since. post-chemo CT showed a node at 1.8cm. We gave it some time to see if it would fall below the 1cm threshold to avoid RPLND, but it did not. RPLND scheduled with Dr. Kaswick in Los Angeles (if anyone has experience with him personally, I'd love to hear). I know RPLND is a major surgery and becomes moreso after chemo, but when I asked about risks and everything he gave me standard RPLND checklist, so I followed up asking if there was anything specific to my case that he saw that would cause anything to be non-standard. What I didn't ask, however, was what made a case non-standard. From what I've read so far on the forum about people experience out of the ordinary results and complications, they were in a more advanced stage as me, had stuff going on in the lungs and/or neck, or had elevated markers, indicating active cancer. I have none of this. Is there anything else I should be aware of that would make this non-standard?

Another thing I noticed specifically about other stories was a mention of "slimy" innards for post-chemo RPLND patients. What does that mean? I feel fine. Everything is back to normal as far as I can tell. Just what did this do to my innards? haha.

Overall the consult went with a lot of "____ can be a problem but we have techniques to spare it" and most percentage questions were answered with "every case is different and statistics go out the window when I open you up."

There's the added mental block I have about the idea of being flayed open and having my guts put on my chest that convincing myself that any of that is normal or safe but I guess C-sections are similar and happen all the time, right?

Anyway, if anyone has had a similar pathology as me and can chime in with some experience and advice and hopefully some expected percentages of complications (grafts for the vena cava, kidney removal, retrograde ejaculation, etc), I'd really appreciate it.

​Thanks.

[eodtech2001]

I wont lie but RPLND blows, however if you go in with a positive attitude and a few little tips that make recovery smoother and faster you should be fine.
I would start by going on a low fat or even zero fat diet to help you afterwards.
The next biggest advice i can give is after the surgery get your butt up and move. The sooner you do that no matter how bad it hurts or you feel the faster you will recover.
Take a small throw pillow with you so that you can use it as a brace for your stomach.
I interviewed my doctor and askes him how many he has done etc....
I was completely okay with his answers and luckily i had mine done at a teaching hospital so i had an army of people taking care of me, RPLND is not a very common surgery so they sort of make a big deal when you do have it done.
Remember everyone is different but by in large you should do fine

[Davepet]

40 some-odd years ago I went through an absolutely horrible RPLND, My understanding is things are much improved now. I fared better than most TC patients back then, but my path report from the RPLND said nothing was found, so probably could have done without it. However, back then, surviving TC was uncommon. I may be the only 40+ year survivor on this forum. Bottom line is you get through it, it is not fun, to be sure. Other than choosing a good surgeon, there isn't much control you can exercise, just do what they tell you
& ask questions here.

Dave

[shabby]

So I had spent time reading up on what to do to prep myself for surgery, namely from a dietary standpoint and it turns out the surgeon says that it really doesn't matter as long as I don't eat or drink for like 12 hours before surgery. I asked about fats and everything and they all said it'll be fine. Granted, I'm still following the guidelines from Sloan regarding RPLND just to give myself the best chances of success.

Did some more digging and it turns out my surgeon did his surgical residency at Sloan, has been performing RPLND for about 30 years now and does about 12-15 of these a year. Bilateral post-chemo RPLND and I guess the word is with that, while they'll try, it's best to expect it to not be nerve sparing until I find out otherwise.

Monday can't come soon enough. Did my labs on Monday, AFP 2 HCG 0 (I was high HCG), so no movement there. Getting another CT on saturday just to have the most recent picture possible for the surgeon. Scheduled for 2 nights in the hospital. I'll have my laptop and a good book to pass the time. Hoping for cute nurses. I'll report back on the other side of anesthesia.

[shabby]

Just throwing it out there, but I'm taking chemo over rplnd 10/10 times. That was a brutal. Surgery went as well as it could, and I'm recovering as well as I could, but chemo was still so much smoother of a path. RPLND get's the nod for time, and that's it.

[shabby]

Labs are returned. The known teratoma mass and all other nodes were clean. Time to put this behind me.