RPLND vs. surveillance

[zoltar]

so---

officially, stage 1 non-seminoma (embryonal carcinoma/yolk sac) (clear CATS and no lymphatic invasion) and i'm wondering about people's experiences with making the decision between watchful waiting and RPLND.

i'm basically at the point where i'm trying to make a decision. it would seem odds are against surveillance at this point as my urologist/oncologist said there's a >50% chance that it would reoccur. i'd love to hear people who took either route and their experience...esp. am curious about people who took the surveillance route.

so...any good resources (aside from here) about making this decision? did everyone get a second opinion? anyone treated at USC, Norris Comprehensive Cancer Center.

thanks.

[dadmo]

My choice would be surveillance. Using the odds that the doctors gave you you have a 50% chance of getting treated when you don't need to. Chemo can cause real problems, I would save it for when I'm sure it's needed. As you may know embryonal carcinoma can skip the lymph nodes so going an RPLND may not be a cure.

[Scott]

Did your doctors indicate what factors about your particular situation they used to estimate the likelihood of recurrence?

Be sure to read this TCRC page about considerations when deciding for or against surveillance and page TEST-6 of the NCCN guidelines.

[zoltar]

Did your doctors indicate what factors about your particular situation they used to estimate the likelihood of recurrence?

Be sure to read this TCRC page about considerations when deciding for or against surveillance and page TEST-6 of the NCCN guidelines.

well, she said that the fact i have embryonal carcinoma is the key factor. saying that...stage I non-seminoma has a 40% reoccurence rate and then further breaking it down into two groups. of the 40%...10% of people who have teratoma/little embroyonal & no lymphatic invasion (best candidates for observation) and those with mostly embroyonal will have a >50% chance of reoccurence even with no lymphatic invasion.

and where's the TEST-6?

[Bob cp]

The reason they are sending me to Indiana University Cancer Center is this very point. My oncologist says the same thing as yours about the 50/50 chance. The only difference with my embryonic carcinoma is that there is lymphatic invasion. Basically, I am going down there for a consult to dertermine RPLND, chemo, or surveillance. My latest scan was normal as well.

So, from what others have said, I would stick with USC Norris and follow their recommendations. My oncologist told me though that if I did not have lymphatic invasion, he would be more inclined to go with surveillance for now.


Bob

[Scott]

and where's the TEST-6?

Click the link to the NCCN guidelines. Once that document is open, click Continue twice, then the link for Nonseminoma Stage IA, IB, IS (TEST-6).

[zoltar]

doctors etc.

i'm with dr. eila skinner at norris (not donald) and she seems extremely competent and good. she recommends surgery but will go with whatever i think i want. yeah, the choice is tough but my biggest concern at this point is if i stayed with surveillance then i very likely could end up doing chemo and surgery and more chemo....right?

i mean the surgery feels like a good option but you're always left wondering about the numbers. i see a lot of people here who go for surgery which makes sense but not a lot of people who stuck through 2 years of surveillance. seems a bit of a psychological mind *uck. so...information is definitely interesting

[Scott]

...if i stayed with surveillance then i very likely could end up doing chemo and surgery and more chemo....right?

The likely results if you choose surveillance are either 1) you have no additional active treatment or 2) you have chemotherapy, either 3xBEP or 4xEP.

[Bob cp]

R,

I am seeing Dr W. He is in the same office with Dr E.

Bob


p.s. Does anyone know what T2 Compliant means in reference to patients?

[Scott]

Does anyone know what T2 Compliant means in reference to patients?

Two separate thoughts:

T2 means the "tumor limited to the testicle and epididymis with vascular/lymphatic invasion or tumor extending through the tunica albuginea with involvement of the tunica vaginalis."

Compliant means "will follow the surveillance protocol, follow directions, and never skip appointments."

[Marge Pugh]

Three highly qualified experts had three different opinions for us. Chris chose the RPLND only after we found a qualified expert in laproscopic/robotic surgery who has performed this procedure many times at the Cleveland Clinic. Chris's reasoning was pretty simple. He has accepted the fact that his disease may recur and he wants his answers now to move on without this hanging so closely over his head. Even though he still is at risk with 99% EC skipping nodes the doctors say the prevelance is low for this to happen or around 5-10% anyway. I think he would have surveilled if the lap was not available to him to avoid chemo until he knew for sure he would need it. Not easy decisions for anyone. You would think that losing a testicle would have been enough to have to go through for a young man.

[zoltar]

surgery

well...

it looks like i'm leaning toward surgery....RPLND. it seems surveillance seems agonizing. however, i'm hoping to do the procedure laproscopically but we'll see how much we can fight the insurance people on that one. hopefully it won't drag out too long.

in any case, thanks for all the posts and thoughts. appreciate the information.

ugh...want it to be over now.

[Scott]

If you're going with RPLND surgery, ideally it should be within six weeks after your orchiectomy, which only gives you a couple weeks to act. See this TCRC page, which says:

Patients with clinical stage I cancer who had their orchiectomy more than 6 weeks before the scheduled RPLND date should consider canceling the surgery. The RPLND is most beneficial if it is done soon after the orchiectomy. If you wait long enough before having an RPLND, you are essentially on surveillance and/or if they do find cancer during the surgery, it is less likely that they will have caught it before it spread outside of the surgical boundary. This is not a hard and fast rule, but unless there is a very good reason for delay, try to have the surgery done quickly.

[Marge Pugh]

Chris is home after only one night in the hospital following a 7 hour Lap RPLND. He is doing remarkedly well. Pain is minimal considering the work done. This surgery should be one the surgeon has performed many times. Very large vessels and other internal organs need to be manipulated by way of robotic type scopes so it should only be performed by an expert. Dr. Gill at Cleveland Clinic Urology could give you a name of someone qualified in urologic laproscopy in your area. It was the way to go for us. Best of luck to you.

[dadmo]

Congratulations. Who would ever dream that an L-RPLND would be treated almost like an outpatient event.