RPLND Endoscopic surgeon needed

[Marge Pugh]

My son, Chris, is deciding to go this route after careful consideration of all three options. He says he cannot mentally tolerate the surveillance alone and the risks of chemo look dreadful. Three doctors cannot agree on any one treatment and have gone over everything with him. If we can get a surgeon that does the RPLND laproscopically and with nerve sparing technique then Chris wants to go that route. He knows chemo will be needed if anything is found. He also is willing do the follow up as necessary post op. Does anyone have someone to recommend in the NW Ohio area??

[boyce]

Laproscopic RPLND

There are really only 3 names that I could find when I researched it.

Dr. Kavoissi is in New Jersey and is teh recognized best. he has 2 that studied under him

1 is at Johns Hopkins and I forget his name - May be Dr. Su
The other is in St Louis and his name is Dr. Bhayani

Please know that this is a very rare procedure to do laproscopically. For me (Post chemo) I went to Sloan Kettering and had Dr. Sheinfeld do a traditional RPLND. Healing times are comparable, many fewer complications from surgery with traditional surgery as well.

Please have him think very hard and call these Drs. Bhayani was VERY helpful in particular.

[tccancercop]

In Cincinnatti are you talking about Randy Broan?

[tccancercop]

Dr. Randy Broan is a grrrrreat guy! He is the one that treated me for my stem cell transplant. I liked him even more when he walked in the room post transplants and said, "Well, you're in remission!"

[Russell's Mom]

pushed the limits

Hi Marge,
I pushed the limits a couple of times and contacted the University of Indiana for advice. They have a very helpful nursing staff. It felt like they were there for helping people (everywhere) rather than just the boudaries of their building. My thought here is that they may be able to guide you toward expertice as you explain your situation.
Russell is doing well after his RPLND. He ran into unexpected blood loss, which has been a bit of a set back, but his cheeks are starting to look pink again. Of course the post-op was no fun, but the PCA pumps are really great. Most of all, knowing the pathology report has allowed us to find footing for the next steps. Maybe it is the nurse in me, but I like to have my arms around understanding what it is that is in front of me! Take care, Russell's mom, Sharon

[Marge Pugh]

Thank you for all the resources. I have all the names and numbers now and will be contacting them tomorrow. Our oncologist is against the surgery. He feels since Chris has no marker elevation that he should opt for 2 rounds of BEP and surveillance. The urologic oncologist at U of M felt surveillance should be option number one. Chris would like the surgery to have the same feeling as Russell's mom. We are still looking for the right road here. Indiana just gave me Dr. Foster and he is not doing the laproscopic procedure I am told. I am leaning toward John Hopkins in Baltimore or Kettering in New York if we can't find someone closer to Toledo. Maybe Cinncinatti, I will check that one out. If all else fails we may just go the chemo route. What can you tell me of the stem cell procedure??

[Scott]

He feels since Chris has no marker elevation that he should opt for 2 rounds of BEP and surveillance. The urologic oncologist at U of M felt surveillance should be option number one.

Surveillance really is a good choice. Chemotherapy is there as a safety net, when you know it's really needed.

[petep]

Hi marge,

I wanted to weigh in...I know I've written before but this is important to you...I was in almost an indentical situation...95% embryonal/5% seminoma, no markers, no invasion, clear scans...

I flew to indy to see einhorn and essentially had the same 3 options...he said any option is fine, and in the end, I would most likely (95+%) be fine....

at one point I asked einhorn what he would do AND why...he said he would choose surveillance....why? he said he knew he could take the uncertainty each month of the 20-30% chance of recurrence, chemo although effective does have side effects and no point getting 2 rounds if you could avoid it 8/10 times, and rplnd can be done, but the recurrence with embryonal runs close to the recurrence with surveillance, given my staging level (I)...again, he said surgery has risks and why have it if you do not need it 8/10 times.

They really seemed to position my options as more surveillance or two preventative rounds....he did say they could do an rplnd, but the data over the last 5-7 years suggests for embryonal stage I...it seemed they often did the surgery for nothing, and that has its risks...or a recurrence occurred at the same rate of surveillance.

Most important to me, I asked if I wait, and have a recurrence, do I dimish my cure rate going to 3 rounds versus 2 rounds...and he said no. He also said they have not seen more adverse side effects with 3 versus 2 rounds...my 3rd round was actually easier for me. That sealed it for me...surveillance.

Further, he said that he knows if he had to have 3 rounds, versus 2, the extra time off would not be a detriment financially or work wise, for him...he said for the person that could not stand surveillance, or the extra time off if a recurrence, he would point them in the direction of two rounds.

Think this way, if your son has an rplnd, he will still be going for monthly checkups during the first year, and continue checkups at longer intervals in future years....each comes with a bit of apprehension...no getting around it....so do not think that the rplnd will get rid of the apprehension.

I spent time reading your post a few times, and my sense is you are opting for rplnd because it seems less invasive, quick, and will get rid of apprehension in the future....I've read so many posts here, and speaking from experience, the apprehension does not just go away....after the rplnd or two rounds of chemo, you will be told...."now you are on surveillance"....and you will be thinking, that's what I was trying to avoid....you are hoping to hear, "now you are cured, you are completely done, go home and don't come back"...but that will not happen. As soon as the realization that hoping this would all just go away was not realistic, it all became very easy for me....comforting almost.

Cancer is a part of who is is now, like the rest of us...and you do learn to cope and get through it....as one oncologist said to me, it's not good you got cancer, but you got the jackpot of cancers, given the standard protocols and cure rates for a stage I patient. So the most important thing to know, is the odds are so, so, so in your favor no matter what you do....

but there will be no simple path regarding eliminating the apprehension...his best case is surveillance, with apprehension each month...., next is rplnd or 2 rounds, with apprehension each month, or last a recurrence during surveillance, 3 rounds...and follow up with apprehension.

It is strange, I do not have apprehension now, after 3 rounds....but deep down, I know the probability of recurrence for me almost one year out is so, so slim....but I also know if I have a recurrence now, it's more serious than the initial recurrence....point is, the apprehension does not disappear. One could say it is almost worse, because you've been thru it, and the thought of doing it again with a lower probablity of cure is worse.

I hope some of this makes sense. I really want to reinforce that whatever he chooses, he will be fine...at this point there really is no bad decision, cure rate wise....what got me through this was thinking thank god it is not my wife or either child....so I know that this must be difficult for you because it is your child.

best wishes - and any decision he makes will be right, because he is dealing with it.

pete

[dadmo]

Pete:
Great post.

[Marge Pugh]

Wow, thanks Pete for your informing post. The experience you and others here are dealing with are important to me. Ultimately, Chris is going to make his own decision. He is reading this board and will see these posts. We are in the Toledo area. I made an appointment with Dr. Gill from the Cleveland Clinic as he is expert in laproscopic RPLND. We go on March 20. In the mean time we will see the oncologist who wants to do 2xBEP and probably have another set of markers drawn as the first week of March will have been one month since all this started...hard to believe! So like I said, Chris is the decision maker here. I am making sure he has all the info to make an informed one. Thank you all for your input and support.

[italian_tc]

Hi Marge, I'm new like you in this disease....
I was diagnosed in the beginning of the year and I'm in the same "hell" of decision...embryonal with vascular invasion, non evidence of disease...
I agree with PeteP at all...but...if there is a small chanche to avoid chemio I want try...
sorry but it's difficoult in english...

I see this pro for rplnd:
- less long term risk (in 5 year with sourveillance you do 12 ct scan...with chemio you can't predict risk)
- if the surgery team is good (and you too...)in a month you will be ok, if you will need chemio, this is a longer way...
- mortality for rplnd is close to 0 in the world (I think at indiana is 0)
- pre chemio rplnd is easier than post chemio rplnd
- pre chemio is safer for ejaculation more than post
- for late relapse...it's only 2% but happen more in the lynph (70% lynph 30% other)...if you don't have a lynph you don't have a late relapse...(less probability to have...) if this will happen could be hard to cure...
- risk for chemio are not predictable
(my doctor say me: if you do chemio here with me or in other place all over the word the risks are the same, for the surgery is different)
- seems that chemio can increase other disease
- if they find something in your lynph you will need less chemio than waiting when you can see it with ct scan or marker

otherwise...I'm very scared from rplnd...and probably I don't need it...
...and the cure rate is the same...

the best way of thinking from a surgeon:
"the point is no the cure rate, the point is the quality of life for the future, I can virtually grant it with well done rplnd. I can't be shure with sourveillance and chemio if needed..."

sorry again for my english,
I hope this post can help
good luck
davide

[italian_tc]

I read again your post...
"He knows chemo will be needed if anything is found. "
I think this is not true! rplnd is curative in a lot of cases...
if they find microscopic cancer you are cured by rplnd and you don't need chemo at all!
You will need chemo after rplnd if big lynph or too much positive lynph are find (2bep as adjuvant) or because of recurrence in other sites (3bep as terapy)

bye
davide

[italian_tc]

sorry for the intrusion...I've booked my rplnd a week ago...if pet and tc will be ok I will have rplnd at the end of march....
they suggest me to wait 3 months because of high risk...they try to avoid useless surgery...
bye...

[Marge Pugh]

All are good arguments pro and con RPLND and everything needs to be considered. I wish you the best of luck, David. I will be watching for your posts to see how you are doing. Chris goes to the oncologist tomorrow for check up. I know the doc will not be happy about Chris's decision for the RPLND but, oh well, its up to Chris. I feel good about this laproscopic procedure. Dr. Gill does plenty of these minimally invasive surgeries for all types of pelvic cancers requiring RPLND. We will see him on March 20th and I will give an update then. Thanks, R for your input, too.