Different Professional Opinions on EC

[DC142]

Hey guys, i was recently diagnosed with TC, 90% Embryonal Carcinoma EC and 10% Seminoma. No Vas. Inv. and CT showed no swollen nodes. Stage 1A. So after the Orchiectomy Sept. 23rd , i saw my first oncologist on Oct 20th who said i was about 70-80% from Orchiectomy alone (my urologist.surgeon stated i was 60% cured). Anyway, my oncologist gave me the impression that he didn't Chemo as a preventive measure would be needed and thinks the Rplnd wouldn't be needed also. He suggested surveillance. He Did stated the recurrence is heightened due to the 90% EC, which i already knew, but still thinks i should just watch it. I left the office feeling pretty good about it.
On oct 21st, i saw my 2nd urologist.oncologist at Johns Hopkins in MD who advised me that i would be a great candidate for the L-Rplnd, since he believes it would benefit me more to do the less invasive surgery then the open Rplnd or surveillance. He also stated that at Johns Hopkins he does this surgery about twice a week with a high success rate. So that's a complete opposite opinion from my 1st Oncologist. I had made a final appointment at Sloan Kettering in NYC for the 30th since im gonna have to decide which steps to take by then anyway because if i dont im essentially doing surveillance.
Both Dr's steered away from Chemo when i brought it up, giving me the feeling that its not the way to go. Im open to every option but there are many pros/cons to each route and both Dr's were impressed with my knowledge on this subject and said everyone who goes through this should do some research.
Anyway, i have a few questions...What are the main differences between the L-Rplnd and the open Rplnd? I know the recovery time is quicker, but is it as effective? What are the downsides to the l-rplnd? if it is the way to go, why are many people still getting the open rplnd? Also why didnt any of my dr's recommend me to take adjuvent chemo? I have read many posts with strong men and women who have gone through this or close to the same diagnosis i have and have seen so many different routes. I would like to know what made everyone ultimately choose their route and why. Any Info would help greatly. Decision time is around the corner...
Thanks Guys (and Gals) I hope everyone is doing great!!!
Dan

[Margaret]

Hi Dan. First off, welcome and looks like you are getting lots of advice which is great. I am SO happy you are going to SK, I believe they have so much more experience than Hopkins. In fact, John Hopkins turned us down (as did Duke, Mayo and St. Louis) for our RPLND because they did not think their team was experienced enough to handle it. Granted, it was a complex RPLND, but it does go to show you that not all doctors are created equal. At SK they will NOT do a L-RPLND. They do not recommend it or perform it. We saw Dr. Sheinfeld and he told us the risks with the L-RPLND, I was surprised at how strongly they felt about it. Yes, the L-RPLND can in some cases shorten a hospital stay...and that is positive, but for us the down side was too great. Also, there are not many doctors with a ton of experience under their belts like you can find with the open RPLND. You will hear lots of different opinions here, which is good and in the end only you can decide what is best for you. I promise you will be well cared for at SK and they are some of the best in the world.

[Fed]

Hey Dan, and welcome. Let me welcome you and join Margaret in commending you for getting informed as best as possible with the pathways that you can follow. Being stage I-A, you could do very well with surveillance, knowing that if your markers go up or something shows up in a CT scan, you would get 3xBEP or 4xEP. To me, either adjuvant chemo or an RPLND (laparoscopic or open) would be overkill considering that you are showing no pathologic evidence of spread. Besides, embryonal carcinoma can sometimes spread hematogenously, in which case an RPLND would not be curative if there any micrometastases have already escaped.

Margaret is also right in noting that MSKCC will not do a laparoscopic RPLND. Joel Sheinfeld is arguably one of the best urologic surgeons in the world, but he is very set on his ways, and he always recommends an open RPLND. My best friend, who trained under Sheinfeld, notes that there are settings in which a laparoscopic RPLND is better (i.e. for staging purposes, but not for cases that are post-chemo) because of the decreased hospital time and lower morbidity.

Hopefully this helps somewhat. Take care, and keep firing questions as they come along.

Fed

[NYC Russ]

Dan,

Let me echo Margaret - more opinions is always a good thing. And I'll echo her a second time, as I went to MSK for my second opinion with Dr. Sheinfeld and everything she said about him is correct. On the other hand, Sheinfeld does seem to recommend surgery more often than other docs.

Interestingly, my actual surgeon (from Cornell, down the street from MSK), would also not do the L-RPLND, only an open. Given that I was out of the hospital in 5 days for my RPLND, I didn't think the 1-2 fewer days as a L-RPLND patient were much of a trade off given all the potential issues with the L-RPLND.

One issue is that most docs seem to NOT recommend the RPLND, at least therapeutically, for people with a high embryonal component to their tumor, as EC apparently tends to spread via the blood and not the lymphatic system (which means cutting out the lymph nodes won't stop it from spreading). It is still used diagnostically, which, if that's the goal, might be a better use for the L-RPLND than an open.

Either way, see what Sloan has to say and mull it over carefully.

Best wishes.

[dadmo]

Dan:
My vote would be for surveillance. It would seem that in your case the L-RPLND would be used for staging purposes and not as a route to a cure.

[DC142]

Thanks everyone for replying. What are the differences between the two (LRplnd and the open)? Does the laparscopic procedure hold the same side effects as the open? Is one better then the other?
I know that according to the NCCN guidelines that the two options for state 1a non seminoma are surveillance or rplnd. And i know that the cure rate after an orchiectomy is good and by having EC drops that cure rate down. I just cant seem to find any information on If one was to have the RPLND, which would be therapeutic rather then diagnostic and why hasnt any of my oncologists recommended Chemo? Is it because they are surgeons lol?

Dan

[MRMRSU]

Hi Dan: There's some interesting info in this link that my hubby and I referred to when we were in your position with decision making last year. It gives good info and a a quick comparison between open RPLND and L-RPLND (as if you didn't have enough reading to do, right?). I think it's natural for patients to want to purge the cancer out of them, and I know Andy in the initial weeks after his diagnosis thought he would want to go the chemo route...but of the three opinions we sought, the choices given were either surveillance or RPLND. All oncs we consulted with believed that the potential long-term side effects of chemo would heavily outweigh any benefits for his circumstance (Stage 1A). If the percentage of teratoma in his tumor was not so large, he could very well have opted for surveillance. That's how he arrived at his choice. Best to you...we know how gut-wrenching this is.

[AdrianB1971]

EC is very dangerous. RPLND is not an option. 2 cycles of BEP or EP as adjuvand. If not, you must be very careful with very very close surveillance program for many many years.

[dadmo]

Dan:
If your choice is to do the LRPLND I'm 100% with you. With no evidence of spread this is a very reasonable option for staging the disease. I can't see any reason you should subject yourself to a full open. The recovery time is much quicker and the chances for complications are smaller. Keep in mind that this will be for staginf purposes and if they find active disease they may revert to a full open which gives better access to the nodes.
I believe that in the future the LRPLND will become standard for prechemo patients.

[DC142]

Thanks Everyone for your responses! Im sure everyone feels how i am feeling right now. Confused! Of course i want to choose the best option for me, but im just stressing over a few things. If i choose surveillance, and it comes back in two years or three, do i want to be dealing with this at a different time in my life? I dont know where ill be or what ill be doing (family speaking). Then on the other hand, maybe it doesn't come back at all. If i get RPLND and all is negative, then i had the surgery for nothing and if i stuck out with the surveillance and it never came back then, ouch, i did it to myself, especially not knowing which side effects i would get from the rplnd. And chemo, which wasnt given to me as an option, i dont know why... do i want to subject myself to such hard chemicals when its uncertain if i have anything at all . because maybe its gone from the orchiectomy alone. My biggest problem is the what ifs... I want to take the right steps but not over do it, but while doing it correctly....
Dan

[Fed]

Dan,

Your feelings are understandable, and many of us can relate to this conundrum you are facing. I will tell you one thing though. If you do relapse, it would likely occur within the first two years after your I/O. The relapse window for non-seminoma is 2 years; the one for seminoma is 5 years (but your seminoma content was so low that I think EC is the dominant factor).

Chemo right now is out of the question. You have not displayed any evidence of spread (pathologic or radiographic), so right now, chemo would be overkill. Surgery is a possibility, but right now it would be mostly for staging purposes since, again, you have shown no evidence of metastasis.

No one ever knows where things will stand 2, 3, or 10 years from now. Cancer and all its consequences are always unexpected events. One thing that helped me cope in the midst of all the confusion about doing something (XRT in my case) or keeping a close eye on things (surveillance) was the realization that if for some reason I did relapse, I would deal with it when the time comes. I can't spend my life worrying about what's going to happen next, otherwise I wouldn't be able to function.

Think it over, talk it out loud, or holler if you need to. Just follow whatever you think is best for you. Hang strong, Bro.

Fed

[dadmo]

Dan:
Surveillance and LRPLND are both reasonable choices. Just remember that if you choose surveillance, and you have a recurrance, you still have all of the odds in your favor.
Anytime you want feel free to vent here. As Fed mentioned we understand.

[WilliamCT]

I opted for surveillance (stage I, 98% EC) had an early recurrence then chemo. I really have no regrets since the idea of a non-curative RPLND bothered me more than the prospect of chemo at that time. Best of luck arriving at a decision.

[DC142]

So many different problems and side effects on any route. Just gonna have to decide and stick to it.

[MRMRSU]

Wishing you the peace and clarity that comes after making a decision. Best of luck on what you decide. And remember Dan, whatever choice you make will be the RIGHT choice because it will be YOUR choice.

[Paul54]

Having time and choices are blessings, not curses. When it all starts to drive me crazy, I say a pray for all those who have no time and no choices.

[DC142]

You are both right. The choice will be the correct one because that is the route i chose. Thanks for the confidence booster, i def. need it at times.

[dadmo]

Dan:
Once you do choose don't look back. It should be pedal to the metal all the way to a cure.

[DC142]

I made a visit yesterday to MSKCC and spoke to Dr. Feldman (Oncologist) and Dr. Sheinfeld....just want to share my thoughts
Like i said, i met with Dr. Feldman and spoke to him for about 40mins regarding my specific condition. He advised me that because i have 90% Embryonal Carcinoma it puts me into a higher risk category because of how quickly it can spread. Also, in pathology reports, he said that just because there was no vascular invasion, doesn't mean that it wasn't invaded??? He said that he favored surveillance only slightly. He also said that if i elected for RPLND, and for example that a lymph node(s) was found to be infected, if it was small enough then Chemotherapy woulnt be needed and the RPLND would then become therapeutic and raise my curative rates from around 70% (from Orchiectomy alone) to in the low to mid 90's.
Anyway, Dr. Feldman then called Dr. Sheinfeld who happily fit me into his busy schedule. I proceeded downstairs where i eventually was seen. Dr. Sheinfeld reiterated what Dr. Feldman stated, but with a little extra charisma. He stated that he believes i would need the RPLND (coming from a surgeon, go figure). He said it would benefit me and if infection was found and was small, or nothing was found at all, my cure rate would remain in the 90%'s. He scheduled me for another CT SCan and bloodwork for Sat, Nov 1st in NYC and advised me to donate sperm. He also set up a second consultation on Nov 6th.
ALso, i asked him about the L-RPLND and he stated that not only is it not as effective and has not been studied for very long, but if they find infection during the procedure, the procedure would be aborted and Chemotherapy would be instilled. He said that it may be the route to go in the future, but as for now, its done for diagnostic purposes and with less room to maneuver, its tough to extract all of the infection if any;. So many different opinions...

[Scott]

...if they find infection during the procedure, the procedure would be aborted and Chemotherapy would be instilled.

Although that may sometimes be the case, it isn't universal. We completed my L-RPLND, and I went on surveillance afterward.

[DianeE]

Hi Dan,

You have a tough decision to make. Please make sure you weigh all your options and choose the one that is right for you.

There are some doctors who are very pro RPLND and will recommend it for just about every patient they see. Keep in mind that you could have an RPLND, have all clear nodes removed, and still relapse later on. It has happened to some of the members of this forum. As has been said, not only does EC travel quickly, it is known to pass the lymph nodes and go directly to the lungs. You will be on a tight surveillance schedule even if you have an RPLND.

I've heard that there is a 70% cure rate for those who have an RPLND, but one has to consider how many of them were cured before the RPLND.

Have you had a second opinion on the pathology? You don't have any teratoma in your pathology. If you did, I could understand the recommendation for an RPLND as teratoma doesn't respond to chemo. Without teratoma, and with a high EC percentage, I'm puzzled why an RPLND was even recommended when there is no evidence of spread.

Make the decision that is right for you. As I've said before, the only bad decision you can make is deciding to skip a follow up.

Diane

[TheTippingPoint]

Hi,

My partner Greg had an L-RPLND at Johns Hopkins (with Kavoussi, who I don't think is still practicing there) in 2005 w/ an embryonal component to his tumor.

We had 3.5 clear years, but he recurred this fall and is now going through 4XBEP. Embryonal is aggressive, and like others have said, an RPLND, lap or otherwise, doesn't always get it all.

Best of luck with your decision,
Mary

[Margaret]

I am so happy you met with Dr. Sheinfeld, I really think he is the greatest...I am not sure if he has ever said this to any of you but he told us in our case if we chose the L-RPLND that our chance for re-occurance would be higher. He said the chance of leaving something small behind was greater. I think that all the choices are difficult but I know you are getting some of the best advice in the world with the doctor's you are speaking with.

[DC142]

Dr. SheinFeld did mention about the L-RPLND, and said that a problem associated with it is missing small debris that could lead to recurrence. I was also told by other Dr's, including Dr. Gonzalgo (Johns Hopkins) who performs the L-RPLND that Sloan Kettering does not think and will not offer or consider getting the L-RPLND, but only the Open. I am extremely fortunate to have seen such great doctors at both facilities. Unfortunately i was hoping for these visits to make my decision easier but they havent. I will get in my moods where i am so for getting the RPLND and i also have them where i am still unsure of what to do. Possible side effects weigh heavily on my mind...

[DC142]

Hi Diane,
Thank You for the post. It seems that the Oncologists i see who are surgeons prefer doing the RPLND and the Oncologists who are not prefer to surveillance. I went to Dr.'s not knowing what to expect and have came out with many opinions. I saw the Dr's with my pathology reports in hand from Robert Wood Johnson where i had the orchiectomy (both Johns Hopkins and SLoan reviewed the slides and found pathology to be accurate 90%EC 10% Sem) and was advised from then on. I know that the dr's i have seen, both Gonzalgo and Sheinfeld are some of the best of what they do and both suggested either L or RPLND...knowing i had no vascular invasion, they still believed surgery would be most beneficial.

[NicksGirlfriend]

I only had about 15% EC in my original pathology with no VI and did relapse.

But I mean, I was the exception. Really; there is a 7 out of 10 chance that the I/O cured you alone. Why would you want to accept treatement, that there is a 70% chance you don't actually need?

And surveillence would be just as good of a choice. If you do relapse, a primary RPLND would essentially be just as effective.

I would go on surviellence; theres always too much uncertainty that you wont need the treatment.

-Nick

[DC142]

FYI... i chose Surveillance
Ill wait and see.

[Fed]

DC,

I'm glad you made a pick you are comfortable with. Don't look back, keep your head up, and don't miss any follow-ups. Best of luck,

Fed

[Scott]

FYI... i chose Surveillance

Sounds like a plan, Dan! Just stick to the schedule faithfully.

[smoothee]

Dan,

Glad to see you chose the path that best suits you.
All the best,

Damian

[jonwil]

Hi Dan

In the UK, names are different, but my understanding is that mine is EC as well. It was recommended that I do surveillance - chemo was an option but RPLND was not offered. Like you I was stage 1 but had high AFP markers which failed to drop at the normal rate. This didn't seem to be a cause of concern as far as my medical team, as the markers were dropping.

Now 5 months on, my AFP has started to rise, a month after finally reaching normal levels. So, as everyone has said, you need to keep to the rigid plan of CT scans, blood tests, X-Rays, etc. I'm now waiting for my next set of blood tests to see if the AFP is still rising. At the moment I have mixed feelings as to whether or not surveillance was the right option, but I guess that happens when things don't go as well as I'd hoped.

After the io, the thought of avoiding further treatment convinced me that surveillance was the way to go, and the odds of avoiding further treatment are in your favour. Needless to say, if it turns out that I don't need any further treatment then it was the right decision as the regular tests, etc don't bother me. If I need the extra treatment, it means its been delayed a few months.

All the best and keep thinking that the odds are in your favour of not having to have any further treatment.

Jon

[dns529]

I am just now reading your thread and felt like I was reading my own history. I was diagnosed on 8/25 had the IO on 8/27, CT on 8/29, then fled Hurricane Gustav. Got back and learned it was 90% EC with no LV invasion, CT clear, markers normal, Stage 1A.

I met with local people, flew to IU to meet with Einhorn, then met with more local people. And didn't get the same recommendation twice. I struggled with it mightly, consulted with Kavousi at Long Island Jewish and Feginshau at Wash U. about the LRPLND - Sheinfeld only does open and I didn't really consider that level of convalescence worth it.

Ultimately, it was Dr. Einhorn who swayed me to surveillance. When I asked him bluntly what he would do if it were him, He said surveillance. When I relayed all of the LRPLND advocacy that I had been given, he said it would still be his third choice.

According to Einhorn, Stage 1A EC has a 40% chance of recurrence. If you do the RPLND, then it only drops to 20% and you likely recur in the lungs.

So I figured I should just push all-in knowing that I have the best hand. If it comes back, I should catch it in the nodes and undergo 2 or 3 BEPs and be cured once and for all.

Had my first surveillance check a week ago - markers normal, CXR clear, CT Scan set for 12/1. So far so good, but a long road to go.