RPLND Question

[NavyHoldi99]

Hey all...stumbled upon this forum yesterday while trying to research the RPLND procedure and thought I might have some luck answering a few questions.

I was diagnosed with Stage IIIB Non-Seminoma Germ Cell last July and went through 4 cycles of BEP which ended in Oct. I didn't have an orchiectomy because I had no tumor in either of my testicles. My blood work and CT scans have been normal since then until this past Tuesday. The cancer had spread to my lymph nodes and caused them to swell to roughly 4 cm but the chemo had shrunk most of them to a somewhat normal size. A few stayed slightly larger and we thought they were dying and didn't have any real concerns...provided they continued to shrink little by little over time.

My scan on Tueday showed that the same nodes had now grown slightly and my oncologist feels it is teratoma so we are gonna knock out the RPLND. I'm waiting on the blood work to see if my markers are still normal or not and I should have that Monday or Tuesday. From the reading I have done on RPLNDs...it seems that most of them occur pretty close to diagnosis or finishing chemo. Has anyone had the surgery months later (my surgery would put me at 8 months post chemo) and what was the verdict? I'm curious if there is a relationship between the time between chemo and surgery and whether the result is teratoma, necrosis, or more cancer.

Also...from my snooping around online...the surgery mostly refers to residual masses as the main cause for the operation. I know that is my case...but the fact that my nodes have grown slightly and not stayed the same makes me wonder if that is indicative of something more. Has anyone had the same gig...where they had the RPLND after their nodes have grown in size...not simply stayed the same?

I certainly appreciate any replies. I'm just trying to get a little peek at what is around the corner. I'm waiting on my consult with a urologist next week (just got the news from my oncologist on Thursday) and am ready to get the ball rolling...again.

Take care!

- Brett

[mstlyn]

Brett,

Welcome to the forum. I just want to say that you are in a great place for help with any questions you have about RPLND.

Hang on and you will be hearing from these guys very soon. They know a LOT, and they love to help.

Tammy

[NavyHoldi99]

Tammy/Robert...thanks for the replies!

I'm racking my brain trying to remember my tumor markers...it's been a long time since they were high. I do remember my bHCG was ~ 24,000 at it's peak...but the AFP and LDH are escaping my memory. As far as I know (or at least was told) I was strictly non-seminoma.

I'm not sure if this helps any...but things have been "normal" for 8 months and I didn't think I'd have to think about all this junk again. Oh well! I'l try to see if I have any of that info floating around the house anywhere.

[Savin16]

Hi there,
Welcome, but I'm sorry you have to be here. You will get some good advice here. I'm not too up on everything, proper guidelines and all, but I can tell you from my brothers experience. He had a R orch. in Oct. 05, then surveillance for 3 months, which he let go longer. may or june 06 started 4 rds. BEP, then scan after that showed enlarged nodes, so RPLND was recommended not til Dec. 29th? after christmas sometime. So a couple months, not as long as you. Most shrunk, one stayed the same, one grew slightly, after the RPLND, which 29 nodes were removed, 2 still had active cancer, so 2 more rds. of VIP chemo were recommended. The 2 were the the ones that grew and stayed the same. Now I'm not saying that this is your case, just my brothers, so good luck.

[NavyHoldi99]

Krista -

Thanks for the reply! Hopefully it's not the same for me but I'll keep you all posted. What stage was your brother? I pray everything is going well! And I assume his markers were elevated around his RPLND when the 2 nodes still had active cancer???

[Savin16]

Hi again, actually he didn't have elevated markers, they were always the same, so they didn't really use those in determining things. The Dr. initially said Stage II, not sure A, B. The VIP was too much for him, he did 1 round, never went back for the 2nd, or sadly to say, he has no intentions of ever going back for checkups, which is just plain stupid, I'm sure this is all HELL, but it's still curable. But he is most likely cured, so that's what we go on.

[NavyHoldi99]

Robert -

I wasn't even aware how they broke things down...that's good to know. I'll check that next week just so I know myself. I never had the surgery because I never had a tumor in my testicle. As strange as it is...my diagnosis came along because my lower back had been hurting for 3-4 weeks straight and I thought it might have been a kidney stone. My flight surgeon set me up with a kidney ct scan and they noticed the enlarged lymph nodes along my lower spine which was causing the back to hurt. Blood work and a biopsy later...they diagnosed TC. Interestingly enough...an ultrasound and manual inspection didn't find anything on the testicles.

I'm in the Navy so I'm being treated at Portsmouth Naval Hospital. My oncologist is awesome and the whole experience last year was great (given the circumstances, of course).

Krista, thanks again for the info. I'm surprised that his tumor markers were normal with two nodes that had cancer. I'm looking forward to getting my bloodwork back next week...

Thanks again guys...I certainly appreciate it!

[Scott]

Welcome, Brett.

I'm an unusual case, since I had RPLND two years after my orchiectomy, for one enlarged, slowly growing lymph node that we expected would be teratoma. It turned out to be seminoma, even though that wasn't in my original pathology. It's almost two years later already, and I'm doing great.

As you know, it will be important to get your tumor marker test results. How enlarged are those lymph nodes?

[NavyHoldi99]

Hey Scott...thanks for the info. I think the nodes in question are ~ 2.5-3 cm. And you have been on surveillance since with no chemo? And did you have the surgery as soon as you noticed the nodes growing?

[Scott]

That's right. We figured the odds of another recurrence were somewhere between 30% and 50%, and so far, all news has been good. My next checks are a month away.

[NavyHoldi99]

That's great news!

On a side note...I see your are riding the LIVESTRONG Philly. Are you gonna head to Austin in Oct for the Ride for the Roses? I'm planning on being there myself as I'm also a rider!

[Scott]

Excellent! Yes, I do plan to ride in Austin, too, although I have to finish earning my way there first. I've got a ways left to go in my fundraising. At least Fed and I can plan to meet you there.

[NavyHoldi99]

Rock on! Consider it a date, then!

[NavyHoldi99]

Are you talking about my original markers or the ones just drawn on Thursday? Either way...I'll post what my new markers are when I get them. I'll also ask what the breakdown was the first time.

I'm assuming that even though I didn't have a tumor removed...they would still have a breakdown from the biopsy on my lymph node that helped with the diagnosis. Any thoughts on that?

[NavyHoldi99]

Thanks for the info, Robert. I do know my markers were back to normal towards the end of my treatment up til March. I'm anxious to see what the current ones are and will let you all know what I find out.