Michigan- L-RPLND

[campjo04]

Marge:
the only concern now is not doing more then required.

Exactly what I was thinking!!

[dadmo]

Marge:
You are so right. If there is any comfort to be found it's in the fact that this road is very well traveled by survivors. campjo04, I wish you had an easy answer. All I can recommend is to seek out doctors who are familure with tc. The big thing to remember is that you happen to be is a situation where a cure seems very likely the only concern now is not doing more then required.

[Marge Pugh]

This does have a deja vu thread feel to it. My son Chris and I are going to Cleveland Clinic to discuss rationale for L-RPLND on 3/20/07. Our path report revealed NO VASCULAR OR LYMPHATIC INVASION. Clear surgical margins, clear CT, markers back to normal. All looks good, right? Except he is 99% EC and has a 30-40% chance that he has mets. He wants the lymph nodes out period. IF they show cancer then he accepts chemo. If not, what a relief and surveillance just got a whole lot easier. My son is 24, I think at this age its very important to ease mental anguish as there are so many other things that need to be on his mind, ie... work, school, girlfriend, living independantly. I think there is not enough evidence to rule out the lap procedure completely and if Chris can be one more success story to support the lap then so be it. The open procedure will still be an immediate option if the lap fails for some reason. Then of course there is the chemo. If only this damn disease was cured completely by the orchidectomy. It seems like that would be enough to have to endure. I embrace all you sons and parents. This road is long but at least its well traveled by survivors.

[campjo04]

Thanks for input/advice. Yesterday's AFP was within "normal range"; so the only information that I have to base a RPLND decision is the pathology:

5% Seminoma
50% Embryonal Carcinoma
10% Yolk Sac/endodermal sinus tumor
10% Choriocarcinoma
5% Teratoma


One thing that I hope that others will take from my experience is the 2nd referral, especially when it came to having the pathologists review the slides of specimen. I did have to go to original laboratory where surg was performed and request slides be sent to U of M.

[dadmo]

campjo04:
Your markers are comming down nicely and you have no sign of spread. Has the doctor talked to you aboput surveillance? The problem with ec is that once it gets into the blood it can skip the nodes and go directly to the lungs so removing the nodes may not be a cure and in your case they aren't even swollen. Others will jump in I'm sure but my choice might be to wait and if something happens you have chemo and or an RPLND as a safety net.

[Margaret]

R-

Excellent point!

M-

[Margaret]

http://www.webtie.org/sots/Meetings/Genitourinary/SUO_12_5_6_2003/transcripts/29/transcript.htm

Here is an interesting conversation had between Sheinfeld and Kavoussi. Now I have met Sheinfeld and I have spoken to Kavoussi over the phone many times. Both are wonderful and I trust them to be some of the best in the field of TC and RPLND. Sheinfeld does not feel the L-RPLND is effective because of complications and also a lower cure rate. On the flip side, Kavoussi feels that in some cases a L-RPLND is the way to go.

On a personal note, Kavoussi looked at my husband's scans and told us Not to get L-RPLND. That he was not a good candidate for it and the chances of having to open him up anyway were high. For anyone considering either option, I would pick up the phone and talk to these guys. They took my calls and I was impressed with both of them.

The web-site that is here with the forum, does not support L-RPLND, saying "Recent developments in the field include the laparoscopic RPLND. This is an infrequently available, very new, very difficult, time consuming operation. It does substantially reduce morbidity and recovery time. However, we do not recommend it because we do not feel that it is a curative operation. In other words, since it won't cure you, it will not eliminate the need for chemotherapy. If it doesn't do this, then why bother doing it at all? See the articles listed below for more information on this topic. " Web site is : http://www.tc-cancer.com/rplnd.html

But I think everyone should consider what ever they feel is best for them. In the end, a cure is all that matters!!!

Hope this is helpful.

Margaret

[boyce]

Stats on L-RPLND

Scott,

I cannot cite a written source for the LRPLND stats as they came verbally from Dr. Sheinfeld while I was in the decision making process.

[campjo04]

campjo04:
Can you tell us anymore about your case. What were your markers? Are your nodes enlarged? Any lung spots? With 50% ec going directly to an RPLND might not be a cure.

Thanks for response.


hcg 1854 pre Radical inguinal orchiectomy
hcg < 5 post two weeks

afp 1500 pre Radical inguinal orchiectomy
afp 19 after 5 weeks ( and dropping)

chest x-ray clear.
head, chest clear on ct.
"no abnormally large retroperitoneal lymph nodes are seen" noted on reading.

orig pathology report stated:
"Non-seminomatous germ cell tumor with predominately choriocarcinoma with a rare foci syncytial trophoblasts-like cells identified."

Two weeks later and ADDENDUM REPORT:
"Predominantly choriocarcinoma features and intermingledembryonal carcinoma elements with focal hemorrhage and necrosis. Small focus of classical seminoma is also identified. No yolk sac tumor elements identified."


Sent slides to University of Michigan pathologists and their readings:
5% Seminoma
50% Embryonal Carcinoma
10% Yolk Sac/endodermal sinus tumor
10% Choriocarcinoma
5% Teratoma

It disturbs me the differences of results. Local Oncologists recommends RPLND if Embryonal > 25%. Appt with him next week. (appt with U of M also next week) AFP should be close to zero by then.

I think U of M may recommend observation.


thanks.

[Scott]

Much higher (6 times) mortality rate with Lap.
More loss of kidneys with Lap
In about 30% of Lap surgeries, they have to open up and do a full RPLND.

Though I agree that L-RPLND remains controversial, I question these claims, which don't mesh with the information I've read. Can you point to published studies that support these statistics? (I'm having déjà vu from this thread. )

[boyce]

I recommend open RPLND

Had my RPLND in November 2006. I researched the LRPLND really deeply. Here's what I found:

Much higher (6 times) mortality rate with Lap.
More loss of kidneys with Lap

Recovery times are not a lot shorter, but the surgery is less invasive. (My scar starts just below my sternum and runs well below the beltine but around the always adorable belly button)

Even the MOST experienced L-RPLND surgeons do just a few per year. I could not find one that did more than 6-8 per year.

I live in North Carolina and flew to SLoan-Kettering in New Yourk for my RPLND with Dr. Sheinfeld. He does over 200 of these (nerve sparing) per year.

Before you book the Lap., please look for every bit of info thatyou can find. In about 30% of Lap surgeries, they have to open up and do a full RPLND.

I am available to share more of my exp with you.

[mstlyn]

I can't offer anything about RPLND vs L-RPLND. I am not sure if my son will have to undergo RPLND or not, but I am glad to finally see some Doctors names in Michigan.

I have yet to hear about any that have a lot of experience with RPLND, but I would like names and numbers of surgeries attached to the names if possible. A solid plan incase needed, would make me feel more grounded.

I wish you the best in your decision between L-RPLND and RPLND. Everyone says traditional RPLND is the way to go.

The surgery is quite invasive, so first thing should be to have a doctor with a lot of experience.

U of M is the place that a lot of people here are sent to for cancer treatment. My son-in-laws sister was born with neuroblastoma, and was treated there. She is in her 20s now and still see's the same doctors there for her yearly checkups.

My grandmother was treated there years ago. (she is no longer with us)

U of M has a very good reputation, but when it comes to testicular cancer and the things I have learned about it, names and number of surgeries and outcomes are important.

[curt]

Full RPLND thoughts

I looked into L RPLND prior to making the decision to undergo a full RPLND as well. Of all the research I did and discussing it with numerous docs I came to the conclusion that I wanted to make maximize the chance of getting the C out of my system. The RPLND is still the standard of care and the results are pretty convincing. Fortunately, in my case, they took out 28 lymph nodes and none were cancerous. No doubt about it - the surgery isn't fun but I had the procedure on Tuesday, 13 Feb and was home Friday night. Within ten days I was walking a couple miles on the treadmill daily. The piece of mind the RPLND has given me was well worth the short-term pain.

I have a nice scar but that doesn't bother me a bit. Hopefully people will ask me what happenned and I can share the story and help someone else out. After less than 3 weeks after surgery I'll actually be kinda surprised if I'll even notice the scar in a year or two - it's amazing how the body heals.

[BouncingChris]

I met with a Dr. Smith, an Oncologist at the University of Michigan medical center. He mentioned a surgeon named Dr. Wolf, also at UofM, and stated that he does quite a few L-RPLND's every year. Just another option for you to look into.

[Enelach]

Dadmo...I would say my son did "ok" with the chemo. He had one bad experience when he got his first bleo shot. High fever, lethargy, and all over feeling bad. Other than that, tho, he did quite good. He has considerable heart burn, but I don't know if that's from the chemo or the surgery. After dealing with TC with both son and husband since Sept, I feel bad I don't know more about the make-up of their tumors etc. Everyone here is so smart on knowing all that. My husband had 4EP for his chemo and he's doing well now. We went for his second monthly check up yesterday and everything is looking good. He had a PET in Jan and the lymph node the dr was checking hasn't changed and didn't indicate active cancer. Needless to say, we breathed a sigh of relief on that news. Hate the thoughts of these monthly appts as it's very stressful just waiting to hear the verdict!