RPLND Hospital advice

[Ryan Bi]

Hi to all.

My son finished his chemo BEPX3 on 7th January 2019. Today he had CT scans in Mayo Rochester, his urologist said , there is one abdomen node enlarged from 0.7cm to 1.1cm with tumor markers normal, my son needs RPLND.

This is not surprising since I saw so many folks here took the same way, but now the problem is which hospital we should choose? Mayo or IU? Anyone knows Dr.Thompson( Huston Thompson)? My son is in the first semester of master , he has a job in the university, anyone could share information:how long can he back to study and work? Most time he just needs sitting .

Many thanks in advance!

Amy, Ryan’s mum

[S P]

You're closest to IU and, that's where I'd recommend going. I'm not sure they'd insist on an RPLND with a 1.1cm node. It may have been 1.1 to begin with and just misread. Imaging can vary from study to study. They might want to repeat the CT scan in 3 months, but a lot will depend on the specifics of the case.

[surfhb]

This was almost identical to what I just. Slight enlargement to 1.1cm and lit up on the PET/CT. My tumor markers are normal also. I had my surgery on Monday of last week. I’m 9 days out. Each day I get better and better. He will be fine. I plan on returning to work on Tuesday of next week which is 14 days exactly from the day they did the surgery. Find a doctor who is experienced in hopes of the least amount of complications.

[Ryan Bi]

Thank you S P for your advice.

Today we got Indiana’s reply, Dr.Cary will review my son’s film, then determine whether he needs RPLND. I feel uncomfortable now, if Indiana decides no RPLND, i will more worry about later recurrence with tumor markers elevating.

Anyone knows how high the possibilities?


Thank you for your advice!

BRs
Amy

[biwi]

Honestly, the Mayo Clinic in Rochester is a pretty well regarded institution locally (I am in the twin cities, MN). I wouldn't have a problem having a non-recurrence RPLND there given your circumstances. I went straight to IU because of my specific circumstances.

What was your sons original pathology?

edit: I found it in your old posts, primarily EC.

Personally, I would probably rescan in a month or so, given markers are in normal ranges. 1.1cm is only slightly enlarged, and isn't necessarily cancer. But if it does continue to grow, it is likely teratoma, and an RPLND is definitely the solution.

[S P]

Dr Cary is a great guy - met him personally at my Summit.

Ultimately the choice is up to you. You can do one electively if you want to, but if IU says you can continue to monitor they're not going to steer you wrong. There's definitely a peace of mind factor that can come into play when deciding to do an RPLND in one of these grey areas. My own RPLND was "elective". I had a residual 1.4cm mass that in all likelihood was just dead tissue from mostly EC. I went to Sloan who is much more aggressive about recommending the RPLND. IU is more conservative and likely would have said I could continue to monitor. Either way, I didn't want there to be any doubt and just had it done. The worries about something being left behind would have eaten away at me. They just found dead tissue when they did mine, but there's such a thing as pathological sampling error. Just because all findings were benign doesn't mean there was nothing.

So it all depends on your comfort level. Some are keen to go for the surgery, others are keen to avoid and do surveillance if at all possible. You're the patient, you're the boss.

[surfhb]

I believe the course of action here is a PET/CT scan looking for enlarged nodes that also light up the scan with FDG uptake. Did you get a PET/CT? If so, did the node in question “light up?”

Most likely if you go the suvailllance route they will schedule a PET/CT at a later time. Possibly 4-6 weeks. I was on the fence about this also so I scheduled the RPLND for after I knew the results of the PET/CT would come in. If the scan said cancer I had my appointment ready to go. If I was clear the I planned on canceling the surgery. You are in great hands at any of these hosiptals. Listen to them. SP is right. They won’t steer you wrong.

[S P]

PET scans should never be used for non-seminoma.

It's ONLY ever used for the post-chemotherapy management of bulky pure seminoma masses.

Otherwise, PET scans are too unreliable and have too high of a false positive rate in TC cases, and just CT scans should be used, which are cheaper and a whole let less radiation exposure also.

[Ryan Bi]

Hi , good morning!

Thank you all very much for your advices! I really appreciate! Now I learned a lot from all above replies, I feel much comfortable now. So far I don’t know which way we must to go, but I am very happy to hear different opinions, those make me think more widely.

So far Mayo planned RPLND on 6th March, and Indiana has instructed us how to shorted the procedure. Dr. Cary is a fast response person, he said he will touch a base plan once he got CT film. Everything went well so far, I will update you all with next steps.

Thank you guys again, maybe you don’t know how great the helps are, really valuable!!

Have a nice weekend!

Best Regards

Amy, Ryan’s mum

[wielandk]

Hi Amy-
If Dr. Cary agrees, I would urge you to go to IU. My 22 yo son lives in MSP and following Dr. Einhorn's protocol through UMN/Fairview system. While I'm sure Rochester could do the job, you want to go to the place where they do RPLND all day every day which is IU. Dr. Cary is the most skilled and experienced surgeon and you won't have to wonder about how well the surgeon will do with this procedure. I would do anything to get my kid to him if I could, and I did, including battling my insurance company to make it happen. Best to you and your son!

Kat, Mom of Jacks

June 2018 - I/O right testicle, Pre-surgery HCG = 257, AFP = 15
June 2018 - Path = 95% EC, 5% Tert & FYS, Stage III-A, lungs, abdomen and questionable liver involvement
Aug 2018 - Completed BEP x 3, Post-chemo HCG = 8, AFP = < 1.5
Sept 2018 - RPLND @ IU

[surfhb]

PET scans should never be used for non-seminoma.

It's ONLY ever used for the post-chemotherapy management of bulky pure seminoma masses.

Otherwise, PET scans are too unreliable and have too high of a false positive rate in TC cases, and just CT scans should be used, which are cheaper and a whole let less radiation exposure also.

Protocol for UCLA is pet/ct scan SP. maybe just a different opinion of care management. Just had mine done a few weeks back which was the reason for RPLND and the areas that light up did come back positive for 100% EC. In my case the PET/CT nailed it right on and they hope I will avoid chemo this way. This process was also sent over to IU in which Dr. Einhorn agreeded 100%.

Maybe this was the case a few years back but in both my cases of Nonsemomina 2013 and 2019 a PET/CT was used multiple times.

[S P]

PET is non-standard care and not clinically indicated for any non-seminoma TC patients. It may have been accurate in your case, but they have a very high false positive rate which can lead to unnecessary intervention and treatment for others. Have seen it happen. Somebody on another support group needlessly went through EPx4 chemotherapy due to a false positive PET used at workup for what was really a Stage I non-seminoma, and Dr E was involved on that case also and said they were grossly over-treated. This is why it's explicitly not recommended for non-seminoma patients in the NCCN guidelines. They're just not reliable enough for management of NSGCT.

[surfhb]

Gotcha. Good info to know. My regular scans were all CT and I know that the PET/CT involves the CT portion so I guess maybe they were just seeing other information with it. Not sure. In my case the RPLND was the way to go. Crossing my fingers for cancer free.

[biwi]

How did the RPLND go? Where did you end up staying in Indianapolis? Any pathology results? Wondering how you folks are doing!

[Ryan Bi]

Hi biwi, thank you very much for your asking.

Right now we are staying in candlewood suites. We are five days after RPLND, Dr.Cary said he the surgery went very well, he could spared left and right both nerves. Currently we don’t have pathology report, we will visit Dr. Cary in Friday.

The pain is bad but ok, but my son now is suffering abdomen distention, we don’t know what is the reason, we have to discuss it in Friday.

The hotel is very near to IU, but they said they don’t have rooms for precarenet people, anyway we booked it from their website, but 30 dollars more every day....

I am happy with the Dr. Cary, he is a very professional urologist, after his surgery 18hours, my son already walked in the room and passed wind , even bowl moved in 24 hours. Amazing.

I will update once I got pathology report!

Thanks again!

Amy, Ran’s Mom