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**petep** · 03-12-07, 03:54 PM

Well, you are done with step 1...the surgery...

You will get lots of comments from knowledegeable people on this board...but the best advice you will get is consult with an expert. There are links off the main page....

TC-Cancer.com | Testicular Cancer Information & Support

https://www.tc-cancer.com

I do not have RPLND experience...but many do here...I believe the current stats on a nerve sparing rplnd under the hands of an experienced surgeon..like foster at IU and sheffield st sloan...are that it is rare to lose ejac. function....so it is not a "likely" situation....also many on the board, including scott one of the administrators, have experience with the laproscopic rplnd...so they can comment...

See how the CT scan shows up, but with embryonal and low markers like you have, you will probably be in not only the good risk category but the better end of that spectrum...

If you do show some lymph node activity it will be rplnd or chemo....and there are many good papers on this....but wait to see what you ct scan shows....

the best news is that this is a very treatable disease...I was told by einhorn that whether I chose rplnd or chemo, I would most probably (>95%) be fine and it'd be a blip in my life...don't worry too much yet about which option you would choose...just read the board, ask questions, hit the links to the experts....here are a few...

Page Not Found - NCI

http://www.cancer.gov/cancerinfo/pdq/treatment/testicular/healthprofessional/

The Testicular Cancer Resource Center's Expert Q & A Page

http://tcrc.acor.org/iu.html

http://www.moffitt.org/moffittapps/ccj/v6n6/article1.htm

You will be fine...but I know this is the scariest time...waiting to be staged...

pete

**Margaret** · 03-12-07, 03:58 PM

Hi Joe...I wish my husband was on-line and could write to you about your questions but I will do my best until others post.

I wanted to say that even if you end up getting the RPLND, it does not mean you will have retro-grade ejaculation. My husband had it done (bi-lateral and open RPLND) in December 06 and he is not having retro-grade. I am glad you are banking, just in case. I spoke to a woman last week and her husband had a full RPLND and they had 2 little girls naturally.

Also, your location is close to Sloan Kettering in New York and I feel having the best person do your surgery offers you the best sucess rate. Dr. Sheinfeld at SK did my husband's surgery and they were wonderful. Our Dr. has a lot of experience in saving the nerves so you have a better chance of not having the retro-grade issues...of course no doctor can promise you anything. There are only a few doctors in the country that do lots of these every year.

I wish you all the best and I hope this helps. I am sure you will get lots more great advice from some of the people here that know a lot more than me. If you want to speak with my husband, he is always willing to help...and so am I.

Good luck,

Margaret

**JoePSU** · 03-12-07, 04:05 PM

Originally posted by Margaret

Hi Joe...I wish my husband was on-line and could write to you about your questions but I will do my best until others post.

I wanted to say that even if you end up getting the RPLND, it does not mean you will have retro-grade ejaculation. My husband had it done (bi-lateral and open RPLND) in December 06 and he is not having retro-grade.

....

Good luck,

Margaret

Margaret,
My urologist said that any ejaculation at all will become inpossible after the RPLND, due to the presence of related nerves...

**Already Bald** · 03-12-07, 04:14 PM

Joe,
Your urologist is mis-informed.
However, you will be fine. I just sent you a PM.
Hang tough.

**Margaret** · 03-12-07, 04:22 PM

Originally posted by JoePSU

Margaret,
My urologist said that any ejaculation at all will become inpossible after the RPLND, due to the presence of related nerves...

Hi again Joe,

They told my husband that same thing because his tumors were so large (some being 10 cm in size and around his Kidneys) that he would also have retro-grade. He had 4 rounds of BEP chemo and things got 'really sticky' (what ever that means) and his nerves were a tangled mess. But Dr. Sheinfeld at SK said that he would try even though the odds were really stacked against us. He told us that doctors don't know every thing and I am so glad they were wrong. Having a doctor with lots of experience with nerve sparing helps too. Which is why I suggested you give Dr. Sheinfeld a call. Of course, I am just speaking from one case, which is my husband and I am unsure what the odds are for different people. But what I have learned from going through this is you never know, and always keep hope alive.

I am hoping for you and sending my prayers that you have a fast recovery!

Margaret

**Fed** · 03-12-07, 04:38 PM

Hey Joe,
Good to hear that you got the path report back. Plenty of people around here have had experience with EC, so I'm sure you'll be able to find guidance. You should take this time to learn as much as possible about your options so you can make an informed decision when the time comes.
Great idea to bank sperm, as well. I'm surprised your doc said to wait 10-12 days, though. Usually you need to wait between 2-4 days after your last ejaculate to maximize yield, so that long of a wait seems odd.
As far as the RPLND is concerned, if you indeed need to have it, definitely go have it done with an expert. Sheinfeld at Sloan does plenty of these a year, and he's one of the top guys on this (I have a friend that trained under his mentorship, and he noted that Sheinfeld is always on top of his game). While you shouldn't rush into any sort of treatment without knowing your options, you should be diligent about it. With the low markers you have, it sounds like you are well on your way to making a full recovery. Hopefully the CT scan will come out clean, as well.
Hope your recover is going smoothly,

**JoePSU** · 03-12-07, 04:42 PM

Originally posted by Fed

Hey Joe,
Good to hear that you got the path report back. Plenty of people around here have had experience with EC, so I'm sure you'll be able to find guidance. You should take this time to learn as much as possible about your options so you can make an informed decision when the time comes.
Great idea to bank sperm, as well. I'm surprised your doc said to wait 10-12 days, though. Usually you need to wait between 2-4 days after your last ejaculate to maximize yield, so that long of a wait seems odd.
As far as the RPLND is concerned, if you indeed need to have it, definitely go have it done with an expert. Sheinfeld at Sloan does plenty of these a year, and he's one of the top guys on this (I have a friend that trained under his mentorship, noting that he is, indeed, on top of his game). While you shouldn't rush into any sort of treatment without knowing your options, you should be diligent about it. With the low markers you have, it sounds like you are well on your way to making a full recovery. Hopefully the CT scan will come out clean, as well.
Hope your recover is going smoothly,

Banking begins tomorrow, every other day, for 10-12 days... Not a 10-12 day wait.

Truthfully I'm really surprised there isn't that many RPLND experts in Philly, which has a huge teach hospital network, between Penn, Jeff, Temple, and Hanneman.

What is the availability of the Sheinfeld guy? Is it just as simple as just calling and asking for an appointment? What about Vaughn?

**Margaret** · 03-12-07, 04:56 PM

Originally posted by JoePSU

Banking begins tomorrow, every other day, for 10-12 days... Not a 10-12 day wait.

Truthfully I'm really surprised there isn't that many RPLND experts in Philly, which has a huge teach hospital network, between Penn, Jeff, Temple, and Hanneman.

What is the availability of the Sheinfeld guy? Is it just as simple as just calling and asking for an appointment? What about Vaughn?

I can get you all of his numbers and his nurse will likely call you back right away. They are a great team.

We were a bit like you...being that we live right next door to Duke medical center and John Hopkins is only a few hours away...we were surprised that the best care needed to be at a hospital that really focused on cancer with doctors that have lots of experience with TC. made all the difference in the world in regards to how my husband faired.

Sloan Kettering: Main Number: 212-639-2000
Dr. Joel Sheinfeld: 646-422-4311

Margaret

**Fed** · 03-12-07, 05:58 PM

Originally posted by JoePSU

Banking begins tomorrow, every other day, for 10-12 days... Not a 10-12 day wait.

My bad. Got too much in my head right now.

Originally posted by JoePSU

What is the availability of the Sheinfeld guy? Is it just as simple as just calling and asking for an appointment? What about Vaughn?

Shouldn't be too difficult to get a hold of him. My buddy presented my case to Sheinfeld for a second opinion, and when I was having the transfer of materials done (slides, radiology, bloodwork labs) the staff was extremely helpful, attentive, and took care of everything very promptly.

**dadmo** · 03-12-07, 06:51 PM

Joe:
It sounds like it's time to get an expert involved. Give Sloan a call and get in touch with either Motzer, Bosl (both oncologists) or Sheinfeld. The first time I called Motzer it was about 6:30 in the morning and he answered the phone. I simply used the number listed on the web page.

**JoePSU** · 03-12-07, 06:57 PM

Originally posted by dadmo

Joe:
It sounds like it's time to get an expert involved. Give Sloan a call and get in touch with either Motzer, Bosl (both oncologists) or Sheinfeld. The first time I called Motzer it was about 6:30 in the morning and he answered the phone. I simply used the number listed on the web page.

My sister is a surgeon at a local hospital, and she is checking with some of her colleagues for recommendations. Apparently the surgeon at Jeff my urologist recommended trained under Sheinfeld, and has a very good rep. Of course, I am interested in making sure that he has significant experience with the RPLND, but I am interested to see what kind of recommendations come from my sis and her colleagues...

**Scott** · 03-12-07, 07:03 PM

Do you have updated tumor markers yet? You need to be sure markers return to normal; if they don't, chemotherapy will be required. While retrograde ejaculation is always a risk, it's a very low risk with an experienced surgeon performing a nerve-sparing RPLND. It's also important to know that embryonal carcinoma can spread through the blood, skipping over the retroperitoneal lymph nodes and heading to the lungs, so RPLND may not prevent the need for chemotherapy.

Your oncologist should discuss surveillance as a treatment option with you, too.

**JoePSU** · 03-12-07, 07:09 PM

Originally posted by Scott

Do you have updated tumor markers yet? You need to be sure markers return to normal; if they don't, chemotherapy will be required. While retrograde ejaculation is always a risk, it's a very low risk with an experienced surgeon performing a nerve-sparing RPLND. It's also important to know that embryonal carcinoma can spread through the blood, skipping over the retroperitoneal lymph nodes and heading to the lungs, so RPLND may not prevent the need for chemotherapy.

Your oncologist should discuss surveillance as a treatment option with you, too.

My urologist wanted to wait about 7-10 days after last week's orchiectomy before checking my markers again, to give the half life cycles some time after removal of the tumor. Then he wants me to see the onocologist a few days later. CT scan is scheduled tomorrow, I figure I'll schedule the bloodwork Wednesday, and make the oncology appointment Fri or monday. (preferrably friday!)

**DianeE** · 03-12-07, 09:44 PM

Hey Joe,

You have an expert TC surgeon and oncologist in your own back yard. Dr. Bruce Malkowicz (Hospital of Univ. of Pennsylvania) has done nerve sparing
RPLND for a few members of this "club" including my son. He is associated
with Dr. David Vaughn, who is on the TCRC Expert List. Please PM me or
email me at [email protected] if you have any questions.

Diane

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