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Thread: And so it begins, RPLND on 22-June at MSK

  1. #1
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    And so it begins, RPLND on 22-June at MSK

    See my previous EPx4 chemo thread here. This is the next step for me.

    Dr. Sheinfeld will be operating. Supposedly I'm #2 on Wednesday, so it's gonna suck not being able to eat or drink anything for awhile on Wednesday morning, and being on a liquid diet the day before.

    So my question to those of you that have experience with the RPLND, what are the first 48 hours like post-surgery? What should I be expecting? Any tips on how to best get through the surgery? Not too nervous right now because I know I'll be in the best possible hands, but my poor wife is terrified. Hoping everything goes smoothly and that I bounce right back.

    Cliffnotes: Staged IIB with mostly embryonal carcinoma, with three enlarged nodes with the largest being about 2.3cm initially. Post EPx4 CT scan showed all of those had shrunk down to nothing, but a "fourth" one which might not have been one of the original three and not seen on initial scans was at 1.4cm. Based on all that, MSK thinks it's 80% likely necrotic (dead) tissue which hasn't dissipated yet for whatever reason, maybe 15% chance of it being teratoma, and 5% or less still active cancer. Doing the RPLND because I want the very best chance of putting this behind me for good. I've also been unemployed since Nov '10 and have a new job lined up that I'm ready to start at in July, so if I'm going to get surgery now is the very best time to do it anyways. Don't want to get a couple months into a new job and finding that this one LN is either not shrinking or actually starting to get bigger and that now I'd have to go on a medical leave after just starting a new job. That would stink. MSK also described the surveillance approach in this case to be "living on the edge" since you'd just be giving still active cancer that may or may not be chemo resistant time to spread, or teratoma time to morph into other highly malignant and chemo resistant cancer, despite the lesser chance of that being what it is vs dead tissue. Will probably have to delay my start date by a week or two to allow adequate time to recover from the RPLND, but I think it's worth it to just get it taken care of now. I don't want to have to worry about it (as much), and will have better peace of mind knowing that I've done all that I could now to take care of this once and for all. Being treated at MSK and having Dr. Sheinfeld doing the surgery has definitely made the decision easier.
    Last edited by S P; 06-19-11 at 01:32 PM.
    Steve - http://www.caringbridge.org/visit/stevep
    February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
    Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
    6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
    22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
    Dec 2012 - 1.5 YEARS ALL CLEAR!

  2. #2
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    Good luck with the next step to your cure, Steve.

    Not having had an RPLND myself, I can't offer any tips, but I wish you all the best.
    Nick

    Embryonal Carcinoma; Seminoma. Marker negative.
    August 2001: Right I/O .
    August - December 2001: Surveillance .
    December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
    December 2001 - March 2002: 3xBEP .
    Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.

    March 2012 - Ten years since finishing chemo.

    Survivorship Blog is here

  3. #3
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    I'd tell your family to expect up to 10hrs for the surgery, first. As for recovery, I was pretty out of it the first day but did manage to get up and walk a very short distance. The epidural made a world of difference for pain management without leaving me loopy. The worst parts initially were the nose tube (woke up from surgery gagging on it) and being in the ICU for a day. In the ICU they will bother you every hour, whether you want them to or not. You will feel the pain in your stomach, but with assistance will move around. Allow others to help and pulling my knees to my chest helped a lot in moving and getting out of bed.
    Left I/O 5/2004, noticed testicular pain and mass and elevated b-hcg
    L-template RPLND 9/2005 by Foster, due to routine C/T showing NSGCT mass, but no elevated markers
    2 Rounds of Adjuvant Carboplatin
    Elevated AFP (3100) 3/2011 with a pelvic mass
    Bilateral RPLND 5/2011 and single site mass (predominantly teratoma with some yolk sac) with AFP at 900 at discharge
    Now, chemo or surveil? BEP or VIP if I do

  4. #4
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    With the epidural, are you restricted in any way movement wise after the surgery? Is it painful to get the epidural in? Was already told I'd be in the ICU / PACU at MSK at least overnight following the surgery, so I know what to expect on that, and that I'll be pretty beat the day after not just from the surgery but from all of the people that'll be bothering me. I have minor bilateral inguinal hernias. Dr. S said he would 'think about' maybe repairing that too while I'm open, but I'm guessing he won't. If he does that'll certainly extend the OR time a bit.
    Steve - http://www.caringbridge.org/visit/stevep
    February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
    Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
    6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
    22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
    Dec 2012 - 1.5 YEARS ALL CLEAR!

  5. #5
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    Quote Originally Posted by S P View Post
    With the epidural, are you restricted in any way movement wise after the surgery? Is it painful to get the epidural in? Was already told I'd be in the ICU / PACU at MSK at least overnight following the surgery, so I know what to expect on that, and that I'll be pretty beat the day after not just from the surgery but from all of the people that'll be bothering me. I have minor bilateral inguinal hernias. Dr. S said he would 'think about' maybe repairing that too while I'm open, but I'm guessing he won't. If he does that'll certainly extend the OR time a bit.
    You feel nothing with epidural, you don't even feel it when it gets in, they just ask you to curl up, then I don't remember anything, doesn't feel anything when it gets removed either, they ask you to sit and lean forward, I expected some pain, but nada. Though I was told not to move apruptly, or shake your head around otherwise you get cefalea? not sure of the name in english but it's a constant headache.
    Jan 11/2011 - left orchiectomy
    Biopsy 100% Embryonal Carcinoma
    CT Shows spread to two lynph nodes largest 5.9cm
    Jan 19/2011 Tumoral Markers lowered to almost normal levels but still high
    Staring BEPx3 on FEB 21/2011
    CT scan 5.9cm mass > 1.9cm Markers Normal
    RPLND June 30/2011 Pathologhy reports: necrotic tissue

  6. #6
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    Hey Steve

    Like Nick I have no relevant experience but wanted to wish you luck and send more support from the UK!
    I followed your EPx4 thread and with your attitude, you'll have this behind you in no time.

    All the best

    Jon
    2 Sep 2010 - Diagnosed TC
    13 Sep 2010 - Right IO
    Pure Seminoma Stage 1 - Surveillance
    Oct 2010 -Biopsy on remaining testis shows no pre cancerous changes
    Dec 2010 - All Clear
    Mar 2011 - Relapse: Enlarged abdominal lymph nodes 8mm and
    15mm
    8 Apr 2011 - Single Dose Carboplatin
    12 May - 2 Jun 2011 - Radiotherapy 30 Gy
    9 Sep 2011 - All Clear
    11 Dec 2011 - All Clear

  7. #7
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    Hi,

    Just wanted to wish you the best of luck with surgery. With regard to op cant speak personally but my brother was in surgery for over the 10 hours, and was in ICU from Friday night until Monday evening. I know ICU sounds frightening but with the one to one nursing they ensure you are 100% comfortable. He had an epidural in too until the Monday when he left ICU and he said this was invaluable. He could not get out of bed for first two days but he sat up in the bed and on the side. Even that helped a little. He walked for first time on the Tuesday. The recommendation is to get up and going as soon as possible. His best friend became "a towel" which was rolled up into cylinder shape which he held to his tummy when getting out of bed etc. It supports the abdoman I think. Physio gave his that tip. On the day before surgery he was in the hospital and in Ireland they give you drink to help empty the bowels and then it was water and very little at that for the day.

    I know this is an apprehensive time for you and your family but you will get through this and this will be the final step of treatment. If your wife can try and keep herself occupied the day of the surgery. The time passes so slowly when you waiting for the surgery to be over. Does she have someone with her for the day to offer support. We confinced our Mam and Dad not to come to the hospital the day of the surgery until he was out. as he went to theatre at half six to get epidural etc and consultant rang at half six that evening to say surgery was over but he was still in theatre coming round.

    Best of luck and you will be posting here in no time telling us that surgery is over and you flying along .
    Val

    Brother (23 when diagnosed) : Dianosed 14/09/2009, testicle removed, Non sem diagnosed. Tumour markers 36000 before op and dropped to 17000 after operation.. Chemo started end of september 4 x BEP. Tumour markers normal at end of chemo. RPLND 26 Feb 2010 No cancer found.

    Latest Appointment May 2013- CT and markers normal

  8. #8
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    No personal experience with the surgery, but best wishes for truly getting this behind you!

  9. #9
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    Good Luck with the surgery! The worst part for my husband was the ng tube. His surgery was 10 hours but that was also because he had a tumor on his kidney as well. He said the surgery was a piece of cake compared to chemo. Good Luck we will be praying for you!

  10. #10
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    Good luck SP with the surgery! I don't have any answers to your questions because we haven't gotten that far yet but we will be right behind you I will be praying for you! Please let us know how it goes as soon as you feel up to it.

    BTW I looked at your beach pictures, they was GREAT!! You have 2 beautiful kids!

    Wishing you the best!

  11. #11
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    Best of luck from me too SP. We'll be looking forward to hearing that you've got through it and are making good progress. I do feel for your wife, I hope she has plenty of support and can keep herself busy whilst you're in theatre.
    Son (James, age 17):
    12/1/10 - TC confirmed
    HCG 80, AFP 156
    12/3/10 - Left I/O
    70% Mature teratoma, 30% EC/yolk sac. 41 x 37mm. Multiple foci of vascular invasion, negative spermatic cord margins.
    1/12/11 - HCG 7, AFP 4.6. Surveillance.
    2/7/11 - Tumour markers elevated - HCG 18, AFP 14.5
    2/15/11 - PET and CT scans show at least 4 lymph nodes affected (abdomen and base of neck).
    3xBEP completed April.
    Celebrated 18th birthday.
    6/30/11 - All Clear!

  12. #12
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    Ugh...

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    Somehow I was calm, but people around me is more nervous and flipping out more than I do, which makes me worry and get anxious, I just can't wait for all of us put this behind us and resume our lives. I wish everything goes smoothly for you.
    Jan 11/2011 - left orchiectomy
    Biopsy 100% Embryonal Carcinoma
    CT Shows spread to two lynph nodes largest 5.9cm
    Jan 19/2011 Tumoral Markers lowered to almost normal levels but still high
    Staring BEPx3 on FEB 21/2011
    CT scan 5.9cm mass > 1.9cm Markers Normal
    RPLND June 30/2011 Pathologhy reports: necrotic tissue

  13. #13
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    I can tell you some from having been with Vince when he had his. As stated about the NG tube....Vince wanted it out but they kept it in for the first 3 days as I recall, don't remember the why of it. The catheter I recall dangling between his legs as he walked. He wanted that out as well but they won't remove that until the epidural is removed. Since the epi is blocking the nerves for the abdomen I guess one can't tell when they gotta go P. As for the epidural itself I do know they wanted him to have it. I wasn't in the room when they put it in and Vince never really said anything about the experience. With the epi you aren't loopy as with the pain killers and can get up and start walking sooner. And that will be key to your recovery.....walk....walk....and walk some more. I don't know how many laps I did around the cancer ward with Vince but it was quite a few. I'd go get something to eat and come back up and he'd be walking again. "I want outta here as soon as possible Pops!" He was out after just 4 days. He had always had a very high tolerance to pain so that may have helped him. Walking will wake up your bowels and get them working again. It will be pretty much crushed ice for food until then.
    I hope it all goes smoothly for you and this will be the last of it.
    Best Wishes

    Terry

    15 Dec 08 Son Vincent diagnosed with TC
    20 Dec 08 RT I/O, 85% EC,15% Teratoma
    3XBEP Feb to April 09
    18 Aug 09 ct scan,massive tumor in lymph nodes
    23 Sept 09 RPLND, 80% Immature Teratoma, 20% Mature Teratoma
    21 Dec 09 scan shows neck, abdomen and groin node enlargements
    21 Dec 09 Amended path report, Metastatic Primitive Neuroectodermal Tumor as well as Metastatic Teratoma
    29 Dec 09 starts 6X VAC/IE
    7 March pet scan shows new disease, chemo stopped
    Hospice 5/11/10
    Passed away 5/15/10

  14. #14
    Quote Originally Posted by S P View Post
    Supposedly I'm #2 on Wednesday
    If this surgery can be as long as ten hours how are you the second surgery that day? Or is it second use of the OR? If Sheinfeld can do more than one RPLND per day he is even more of a beast than I already thought he was for concentrating through one of these marathon intensive surgeries. What is average length for the procedure. On a side note: do surgeons get water/snack/bathroom breaks?

    Steve, you certainly will be in my thoughts and prayers. As someone who will likely go under Sheinfeld's knife in the near future, I know you're in the best hands on the planet. I think I speak for many others who both have and have not posted on this website when I say that we are selfishly also really looking forward to your next post! You're the man. Based on the way you cranked through every day with such low hemoglobin levels I'm guessing you will be one of those guys that says chemo was the hard part.

  15. #15
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    [QUOTE=B P;150201]If this surgery can be as long as ten hours how are you the second surgery that day? Or is it second use of the OR? If Sheinfeld can do more than one RPLND per day he is even more of a beast than I already thought he was for concentrating through one of these marathon intensive surgeries. What is average length for the procedure. On a side note: do surgeons get water/snack/bathroom breaks?

    I wonder this too! My husbands was 10 hours and his surgeon did a surgery before my husbands. It was not an RPLND though something small. His surgeon was with me in the recovery room he told his chief resisdent they were going on rounds then coming back to check on my husband. He didnt look tired at all.

  16. #16
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    Quote Originally Posted by B P View Post
    If this surgery can be as long as ten hours how are you the second surgery that day? Or is it second use of the OR? If Sheinfeld can do more than one RPLND per day he is even more of a beast than I already thought he was for concentrating through one of these marathon intensive surgeries.
    Even though he's an expert in TC, he's still a urologist, and even at a center of expertise I'd think that the number of TC cases they'd be seeing would be low in absolute terms compared to other urological conditions. I'd think he'd be doing something quicker beforehand, maybe a prostate operation, etc.?

  17. #17
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    Thanks for the well-wishes and prayers! Sorry I haven't been keeping up. Been too busy playing with my kids and getting a bunch of stuff done before leaving tomorrow. Still gotta pack, again! Been a travel heavy few weeks. Up to MSK and back. Down to the beach and back. Now up to MSK again.

    Dr. Sheinfeld does 150-200 RPLNDs per year. He typically operates on Wednesdays and Fridays, so yeah that comes out to 1-2 per day he operates. The MSK pamphlet on the surgery says it'll take 3.5 to 5 hours, so yes very easy to squeeze two in per day going at that rate. A less experienced with this but still highly competent surgeon would probably go slower, so yeah I could see the total operating time get up into the 8+ hour range.
    Steve - http://www.caringbridge.org/visit/stevep
    February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
    Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
    6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
    22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
    Dec 2012 - 1.5 YEARS ALL CLEAR!

  18. #18
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    Quote Originally Posted by val View Post
    Hi,

    Just wanted to wish you the best of luck with surgery. With regard to op cant speak personally but my brother was in surgery for over the 10 hours, and was in ICU from Friday night until Monday evening. I know ICU sounds frightening but with the one to one nursing they ensure you are 100% comfortable. He had an epidural in too until the Monday when he left ICU and he said this was invaluable. He could not get out of bed for first two days but he sat up in the bed and on the side. Even that helped a little. He walked for first time on the Tuesday. The recommendation is to get up and going as soon as possible. His best friend became "a towel" which was rolled up into cylinder shape which he held to his tummy when getting out of bed etc. It supports the abdoman I think. Physio gave his that tip. On the day before surgery he was in the hospital and in Ireland they give you drink to help empty the bowels and then it was water and very little at that for the day.

    I know this is an apprehensive time for you and your family but you will get through this and this will be the final step of treatment. If your wife can try and keep herself occupied the day of the surgery. The time passes so slowly when you waiting for the surgery to be over. Does she have someone with her for the day to offer support. We confinced our Mam and Dad not to come to the hospital the day of the surgery until he was out. as he went to theatre at half six to get epidural etc and consultant rang at half six that evening to say surgery was over but he was still in theatre coming round.

    Best of luck and you will be posting here in no time telling us that surgery is over and you flying along .
    Thanks Val, I'll keep all of that in mind along with the towel trick.

    Because they moved my surgery up by two days, my wife actually won't be there with me for the surgery, which is probably a good thing. Too difficult to keep rearranging her schedule. Instead my dad will be up there with me sweating out the wait time during the surgery driving himself crazy instead. My wife will be working and busy taking care of the kids Wed/Thurs, and then coming up Thursday night when I'll hopefully already be up and around. Was told they'll definitely want me up and walking around the day after the surgery, so that'll be Thursday.
    Steve - http://www.caringbridge.org/visit/stevep
    February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
    Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
    6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
    22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
    Dec 2012 - 1.5 YEARS ALL CLEAR!

  19. #19
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    Quote Originally Posted by tjbrady View Post
    I can tell you some from having been with Vince when he had his. As stated about the NG tube....Vince wanted it out but they kept it in for the first 3 days as I recall, don't remember the why of it. The catheter I recall dangling between his legs as he walked. He wanted that out as well but they won't remove that until the epidural is removed. Since the epi is blocking the nerves for the abdomen I guess one can't tell when they gotta go P. As for the epidural itself I do know they wanted him to have it. I wasn't in the room when they put it in and Vince never really said anything about the experience. With the epi you aren't loopy as with the pain killers and can get up and start walking sooner. And that will be key to your recovery.....walk....walk....and walk some more. I don't know how many laps I did around the cancer ward with Vince but it was quite a few. I'd go get something to eat and come back up and he'd be walking again. "I want outta here as soon as possible Pops!" He was out after just 4 days. He had always had a very high tolerance to pain so that may have helped him. Walking will wake up your bowels and get them working again. It will be pretty much crushed ice for food until then.
    I hope it all goes smoothly for you and this will be the last of it.
    Best Wishes

    Terry
    Thanks Terry! Guess I'll be up walking around a lot too, because I most definitely WILL want out of there ASAP as well. Gonna miss my kids and family a ton. I've missed them sooooo much and now I'm gonna have to be away again.

    Have been told that I have a high tolerance for pain, or maybe I'm just used to it from the back troubles I've had along with some other stuff, so hopefully I won't have to hit the pain meds too hard. Should help me as far as getting up and being able to walk around more. Personally I'd rather "grit and bear" more pain, and get acclimated to it a bit, than go heavy on the pain meds. We'll see though...

  20. #20
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    Quote Originally Posted by T1130 View Post
    Good Luck with the surgery! The worst part for my husband was the ng tube. His surgery was 10 hours but that was also because he had a tumor on his kidney as well. He said the surgery was a piece of cake compared to chemo. Good Luck we will be praying for you!
    Thanks! And that's exactly what I'm hoping for right there. The chemo kicked my butt pretty bad with the severe anemia and needing to get three transfusions. The way I see it , at least now (knocking on wood ), is that any surgery where they can split you open and you can be up and walking around the next day with the pain hopefully under reasonable control can't be that bad. Living for six weeks where ordinary everyday physical tasks like getting to the bathroom or getting up a flight of stairs sends your heart racing and leave you out of breathe, that's hard!

    Really hoping that the powers that be think I've suffered enough and go a bit easier on me on this one.

    Quote Originally Posted by B P View Post
    On a side note: do surgeons get water/snack/bathroom breaks?
    No. Or at least I don't think so. The needed stamina is all part of surgical training during your fellowship. My wife has quite an embarrassing story on that note, as far as bathroom breaks, from her med school years.

    Quote Originally Posted by B P View Post
    Steve, you certainly will be in my thoughts and prayers. As someone who will likely go under Sheinfeld's knife in the near future, I know you're in the best hands on the planet. I think I speak for many others who both have and have not posted on this website when I say that we are selfishly also really looking forward to your next post! You're the man. Based on the way you cranked through every day with such low hemoglobin levels I'm guessing you will be one of those guys that says chemo was the hard part.
    Thanks a ton , but pray you won't have to go through with this. I will for you. There would have been nothing better than to get an all clear on that post-chemo CT scan which really truly makes this optional, but I missed out on that. Of course if you're being treated at MSK, they're going to recommend getting it done regardless even with all LN's shrunk to below 1cm. They don't mess around, but have very good stats that justify that.

    Quote Originally Posted by CW406 View Post
    Even though he's an expert in TC, he's still a urologist, and even at a center of expertise I'd think that the number of TC cases they'd be seeing would be low in absolute terms compared to other urological conditions. I'd think he'd be doing something quicker beforehand, maybe a prostate operation, etc.?
    Well there's 8000 cases of TC per year in the U.S. alone, if I recall. I forget the exact stats beyond that, but I think I heard that maybe one-third of all those cases would need to have an RPLND done or something? That's still about 2000 or so RPLNDs. Enough people like me are concerned enough about this surgery to be perfectly willing to travel 5 hours to get it done by a recognized expert. I'm not sure what other types of surgery he might do, but I could easily see the quoted 150-200 RPLND surgeries per year finding their way up to him.

  21. #21
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    SP,
    Had my RPLND at MSKCC with Dr. S in 2006.
    Mine was a long surgery, and he had to bisect my right kidney.
    Still, I managed to wake up WITHOUT the NG tube! That was a big relief.
    They are really top notch there, clean and caring nurses and lots of docs.
    Wishing all the best!
    Joe
    Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
    Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

    Please see a physician for medical advice!

    My 2013 LiveSTRONG Site
    The 2013 Already Balders

  22. #22
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    Quote Originally Posted by S P View Post
    Well there's 8000 cases of TC per year in the U.S. alone, if I recall. I forget the exact stats beyond that, but I think I heard that maybe one-third of all those cases would need to have an RPLND done or something? That's still about 2000 or so RPLNDs. Enough people like me are concerned enough about this surgery to be perfectly willing to travel 5 hours to get it done by a recognized expert. I'm not sure what other types of surgery he might do, but I could easily see the quoted 150-200 RPLND surgeries per year finding their way up to him.
    I started to do the back of the envelope calculation myself before that last post, actually, but figured I'd look like too much of a nerd . Even if he does that many, I'd think that he would only do one a day.

    Just think of it this way...he will be nice and warmed up by the time he starts with you. Best of luck!

  23. #23
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    My husband had the RPLND and a partial nephrectomy to remove a large kidney tumor on April 20. His surgery started at 7am, he was done about 12:30pm. Both went rather quickly. The nurse called me every hour or so to update me on the progress, which was the best thing ever. I'd ask if they do that at your hospital. I would not have managed the waiting so well if not for that.

    pre-op -1day, the "cleansing" solution sucked. He was in pain and tired of going to the bathroom...but tolerable. Not eating was hard. Got in for pre-OP at 6am, all prep went smoothly. I was with him until they wheeled him into the operating room and he was already falling asleep.

    immediate post-op was hard. He vomitted a bit, then they got that under control but he was in a ton of pain (and he's a tough guy, never takes pain meds). The first 12-24 hours or so were not that bad since he had significant pain meds. As those started to taper off though, it got harder. He also had a hard time moving around, though that was important for his recovery.

    Surgery was Wed. He could just barely tolerate liquids that were not clear by Sat. The resident wanted to discharge him Sat but we said no way - he still had his drainage tubes, couldn't walk, and couldn't eat. by Sunday though, he was a world of difference better. Could tolerate lighltly solid food (yoghurt, soups), and could walk a bit, so they discharged him. Ended up back at the doc on Monday because his drainage tube popped out, but by Tuesday, all was ok. He still took a good 4 weeks before he was feeling almost back to normal (tho even now, his incision hurts and he recently had an infection). It was about 6 days before he "felt human again." He did try walking the first days after surgery, but could barely manage.

    Good luck!

  24. #24
    Join Date
    May 2011
    Location
    Montreal
    Posts
    72
    Hey S P,

    Just wishing you good luck on the surgery and hope you have a good and fast recovery.
    Right I/O 4/6/11
    Stage II embryonal carcinoma
    Chemotherapy: 3xBEP
    1st Cycle - 5/9/11
    2nd Cycle delayed low Neutrophil
    2nd Cycle - 6/6/11
    3rd Cycle - delayed lung/breathing issues

  25. #25
    For those of you who had kidney work as part of the RPLND, did you know that was going to be part of the operation going into it or did they inform you of that after you woke up?

  26. #26
    Join Date
    Jul 2010
    Location
    Toronto, Canada
    Posts
    586
    Hi SP - Shaun and I wanted to wish you all the best with the surgery. Shaun has always said that he'd choose the RPLND over chemo any day. He was feeling pretty good (albeit still tender) about 1 week after the procedure. A few last minute tips from Shaun:

    - Get the epidural, it doesn't hurt going in or coming out. He literally didn't feel it and it allowed him to take less hard core pain meds, which allowed the bowels to wake up sooner.

    - Bring/get earplugs for the hospital - he found it tough to sleep otherwise with all the beeping, etc.

    - Bring some easy-to-slip-on and off slippers and start walking ASAP. He was walking at about 6pm the day of his surgery. I couldn't believe it but he was OK.

    - Val's towel suggestion is great. Shaun used an extra pillow from the hospital and held it to his stomach when he sneezed/laughed, etc.

    - Shaun ended up having chylous ascites so I have to mention, stick to a no/low fat diet for a few weeks after the surgery as a precaution. I believe MSK encourages this anyway, which is great because the ascites was the worst part of Shaun's entire experience!

    You've got a great attitude, you're in expert hands, and it will all be behind you before you know it.

    Thinking of you,

    J
    Husband Shaun diagnosed March 2010. AFP 4571, HCG 3340.
    6cm x 6cm x 8cm retroperitoneal mass + 1cm nodule in right lung.
    Stage IIIb, Intermediate Risk.
    Left I/O March 9/10: 75% EC, 20% Teratoma, 5% Yolk Sac + Seminoma.
    3xBEP + 1xEP March 15 - May 21/10: markers normal.
    Bilateral RPLND July 28/10: 9.5 x 7 x 4.5cm mass, teratoma only.
    Chylous Ascites Aug/Sep.
    November 2012 All Clear
    Continuously monitoring 0.9 x 1.7cm omental nodule (possible fat necrosis)

    www.teamshaun.wordpress.com

  27. #27
    Join Date
    Mar 2011
    Location
    San Antonio, TX
    Posts
    44
    Quote Originally Posted by B P View Post
    For those of you who had kidney work as part of the RPLND, did you know that was going to be part of the operation going into it or did they inform you of that after you woke up?
    My husband's kidney tumor was diagnosed by CT scan just after the I/O. So yes, he knew about the nephrectomy before the RPLND. The initial debate was over whether it had to be complete or if they could do a partial (initially all said complete, then one said partial). Didn't know until the actual surgery if it'd be partial or complete. Before the surgery, there was some debate about doing the RPLND because his tumor markers hadn't come down quite far enough one week before the surgery. But then they decided they'd likely proceed with the RPLND since they had to go in for the kidney anyway. As it happened his tumor markers came down to normal range the day before surgery.


    btw - the kidney tumor at the same time as TC is apparently pretty rare. They were all shocked and prompted them to consult everyone and do a lot of discussion, probably more than they would have otherwise.

  28. #28
    Join Date
    Feb 2011
    Location
    Rockville, MD
    Age
    35
    Posts
    1,202
    Thanks Joe, SpaceWife, and julesTO and Shaun! Appreciate all the tips. It's definitely putting my mind at ease. Wife is still flipped, but only because she knows too much being a physician. Hopefully she'll be able to keep herself busy enough tomorrow and I'll be done before she has time to think and wonder too much about it.

    All packed. Gonna get the kids up in about 15 minutes so that they can run over to the metro station with me to see me off with my wife, and then the bus up to NYC. Got my hibiclens soap packed, and the yummy magnesium citrate that I'll be enjoying later today. Tanking up with some juice now before setting off. Liquid only today.
    Steve - http://www.caringbridge.org/visit/stevep
    February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
    Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
    6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
    22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
    Dec 2012 - 1.5 YEARS ALL CLEAR!

  29. #29
    Join Date
    Feb 2011
    Location
    Rockville, MD
    Age
    35
    Posts
    1,202
    Quote Originally Posted by Already Bald View Post
    SP,
    Had my RPLND at MSKCC with Dr. S in 2006.
    Mine was a long surgery, and he had to bisect my right kidney.
    Still, I managed to wake up WITHOUT the NG tube! That was a big relief.
    They are really top notch there, clean and caring nurses and lots of docs.
    Wishing all the best!
    Joe
    Joe, do they do the epidural at MSK? They didn't mention anything about it when I was up there other than IV pain meds and a PCA so I'm a little confused. Seems like an epi is the way to go though based on all the feedback.

    BTW, my family still lives in and I grew up in the Downingtown area. Up north a tad in Glenmoore. We used to get up that way every few months, but not at all this year with all that's been going on.

    Glad everything worked out with your RPLND.
    Steve - http://www.caringbridge.org/visit/stevep
    February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
    Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
    6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
    22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
    Dec 2012 - 1.5 YEARS ALL CLEAR!

  30. #30
    Join Date
    Apr 2009
    Location
    Yankton, South Dakota Woo-Hoo...
    Age
    28
    Posts
    923
    Good luck with you RPLND tomorrow and I wish you a speedy recovery,We will be here when you wake up!!!

    Diagnosed 4/17/08
    Right orchiectomy 4/18/08
    Pure choriocarcinoma; HCG 715,000; lungs, lymphnodes, liver, and random other places
    4X VIP chemo at IU with Dr. Einhorn 4/25/08-7/4/08
    HCG down to 7.2 10/28/08
    HCG back up to 198 12/29/08
    1 X PVB 1/2/09-1/6/09
    2 X HDC w/ stem cell rescue 2/4/09-3/14/09
    Follow-up with Dr. Einhorn 4/22/09
    HCG 1.2
    3 rounds, 21 days, twice daily, VP-16 50mg 4/24/09-7/10/09

    http://www.caringbridge.org/visit/johncovell

  31. #31
    Join Date
    Nov 2006
    Location
    Downingtown, PA
    Age
    46
    Posts
    2,051
    Quote Originally Posted by S P View Post
    Joe, do they do the epidural at MSK? They didn't mention anything about it when I was up there other than IV pain meds and a PCA so I'm a little confused. Seems like an epi is the way to go though based on all the feedback.

    BTW, my family still lives in and I grew up in the Downingtown area. Up north a tad in Glenmoore. We used to get up that way every few months, but not at all this year with all that's been going on.

    Glad everything worked out with your RPLND.
    No, I never was offered, or received, an epidural at MSKCC. They had me on the pump, and switch me over to Vicodin on day 6, for the drive home. The pain was managed just fine- every day I got stronger. The nurses are very attentive. I didn't miss the epi.
    Use your inspired spirometer, and plan to walk laps around the 5th floor. You will want a robe and maybe a hat seeing as you are bald like me. Bring DVD's and a book for your Dad.

    Give yourself up to them, they will take care of you.
    All the best, and write when you can.
    Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
    Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

    Please see a physician for medical advice!

    My 2013 LiveSTRONG Site
    The 2013 Already Balders

  32. #32
    Join Date
    Feb 2011
    Location
    Rockville, MD
    Age
    35
    Posts
    1,202
    Thanks Joe! Yeah that's the plan. Whatever MSK does I'll be doing. Will just show up and they can take it all from there. I know they know what they're doing. Am on the bus up to NYC right now typing on my iPad, which yes has a bunch of movies on it . Looking forward to getting the show on the road.

    All the people on the bus eating snacks are killing me though. Liquids only today!
    Steve - http://www.caringbridge.org/visit/stevep
    February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
    Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
    6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
    22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
    Dec 2012 - 1.5 YEARS ALL CLEAR!

  33. #33
    Join Date
    Feb 2011
    Location
    Rockville, MD
    Age
    35
    Posts
    1,202
    Quote Originally Posted by TC Destroyer View Post
    Good luck with you RPLND tomorrow and I wish you a speedy recovery,We will be here when you wake up!!!
    Thanks!

  34. #34
    Join Date
    Feb 2011
    Location
    Georgia
    Posts
    269
    Good Luck SP!! You will be in our thoughts and prayers tomorrow!! Wishing you a speedy recovery!!

  35. #35
    Join Date
    Oct 2010
    Location
    Cary, NC
    Posts
    1,175
    Here's to a fast and full recovery so you can kick this @#$%^ to the curb once and for all!
    Heidi

    Husband - age 51
    10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; ß-HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
    11/1/10 4X BEP
    12/7/10 End Cycle 2 - ß-HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
    2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
    6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
    Surveillance since 6/11

  36. #36
    SP,

    I just had my open-RPLND performed on May 12th at Indiana University. For me, I think the procedure took around 3 hours, I was wheeled into my recovery room that same day. I must have been fortunate not to have to go to ICU. I shared a room with a guy who had the RPLND done the say day ,and we both seemed to progress about the same. I did had some sort of spinal tap for the pain, and it must have worked because I din't feel much pain after the surgery. I believe it was next day that they had me walk around at least three times a day and that wasn't too bad. When i was released on the 15th, I was prescribed Vicatin which I only needed for 3.5 days, after that I was fine.

    The staples were probably the most annoying part, they started to itch a few days before it was time to remove them (2 weeks).

    I'm not sure if any of this info will be helpful to you, but I wanted to reassure you that the procedure will go well.

  37. #37
    Join Date
    Dec 2006
    Location
    Gaithersburg, MD
    Age
    38
    Posts
    5,280
    Best of luck with the RPLND. You are in great hands at MSKCC, so no doubt you will do well.
    "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
    11.22.06 -Dx the day before Thanksgiving
    12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! Final follow-up: 07/2014.
    Please support my fundraising efforts for the 2013 Austin LIVESTRONG Half Marathon!


  38. #38
    Join Date
    Feb 2011
    Location
    Rockville, MD
    Age
    35
    Posts
    1,202
    Well I'm here at Hemlsley Medical Towers already, right across the street from MSKCC main campus. Was able to check in early thankfully. That's good, because it's time to down this nice bottle of magnesium citrate and then get comfy in the bathroom.

    Was soooo painful getting off the bus near Penn Station and then smelling all of the great food in the city through the open cab windows, knowing I can't eat any of it! lol Gonna stay on a strict no fat diet to hopefully avoid the ascites, but when I come back up for follow-up hopefully I'll be able to indulge myself a little bit.

  39. #39
    Join Date
    Feb 2010
    Location
    Ireland
    Posts
    604
    Hi SP,

    Best of luck with it all, will be thinking of you
    Val

    Brother (23 when diagnosed) : Dianosed 14/09/2009, testicle removed, Non sem diagnosed. Tumour markers 36000 before op and dropped to 17000 after operation.. Chemo started end of september 4 x BEP. Tumour markers normal at end of chemo. RPLND 26 Feb 2010 No cancer found.

    Latest Appointment May 2013- CT and markers normal

  40. #40
    Join Date
    Feb 2011
    Location
    Madison, WI
    Age
    36
    Posts
    83
    Here's to kicking this crap to the curb for good! Best to ya Steve!


    Steve
    Diagnosed 1/27/11 @ 3:30PM
    Pre-I/O Markers AFP 24, HCG 1.4
    Left I/O 1/31/11, 100% Classic Seminoma
    Staged @ 1B
    02/23/11 Put on surveillence, per Dr. Einhorn
    Current Markers AFP 21, HCG <.6
    2 lymph nodes 5.5 and 7.5 mm
    3/5/13 2 Years ALL CLEAR!!!

  41. #41
    Join Date
    Feb 2011
    Location
    Perth, W. Australia
    Posts
    365
    Best of luck SP!
    Son (James, age 17):
    12/1/10 - TC confirmed
    HCG 80, AFP 156
    12/3/10 - Left I/O
    70% Mature teratoma, 30% EC/yolk sac. 41 x 37mm. Multiple foci of vascular invasion, negative spermatic cord margins.
    1/12/11 - HCG 7, AFP 4.6. Surveillance.
    2/7/11 - Tumour markers elevated - HCG 18, AFP 14.5
    2/15/11 - PET and CT scans show at least 4 lymph nodes affected (abdomen and base of neck).
    3xBEP completed April.
    Celebrated 18th birthday.
    6/30/11 - All Clear!

  42. #42
    Join Date
    Feb 2011
    Location
    Rockville, MD
    Age
    35
    Posts
    1,202
    Thanks everybody! The fun begins at 1015am on Wednesday.
    Steve - http://www.caringbridge.org/visit/stevep
    February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
    Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
    6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
    22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
    Dec 2012 - 1.5 YEARS ALL CLEAR!

  43. #43
    Join Date
    Feb 2011
    Location
    Southern California
    Posts
    69
    Steve-

    I hope you are sleeping well tonight.
    My thoughts are prayers are with you.

    Chuck

  44. #44
    Join Date
    Apr 2011
    Location
    Oxford, MS
    Age
    35
    Posts
    1,137
    Best of luck tomorrow and with a speedy recovery!
    My husband's is exactly a week after your's, so we will be following your recovery in hopes that his will go as well (because I am that sure your's will go well!)

    BTW, I am with your wife on too much knowledge - I'd rather not know on all of this too. Downside of the field though.

    Sleep tight,
    Tracy
    Tracy
    Cancer pharmacologist, caregiver blog here

    Wife to Kel, dx 12/30/11 Stage IIIc (poor) embyronal, AFP 13700, 10x11 cm retroperitoneal mass, 1 cm^2 lung met
    Left I/O 12/31/10.
    4xBEP 1-4/11, AFP=22, 5*7 RP mass, tx failed
    1.5 x VeIP 5-6/11; tx failed, AFP/b-hCG rising
    Salvage RPLND @Indy 6/29/11, metastatic mixed germ cell tumor with yolk sac, seminoma and teratoma
    Remission! AFP steady since 9/2011; 1.5 years ALL CLEAR

  45. #45
    Join Date
    Mar 2011
    Location
    Sevenoaks, Kent
    Age
    35
    Posts
    361
    Hey Steve,

    Just want to wish you well with surgery today. Will be sending you positive vibes and looking forward to hearing from you soon
    Dave Hanson
    Found lump 18/02/2011
    Ultrasound confirmed mass 23/02/2011
    CT Abdomen, pelvis, chest (clear) 24/02/2011
    Left I/O 1/03/2011
    99% Seminoma <1% Unknown germ cell 10/03/2011
    Staging T1 - 1A 10/03/2011

    2 month - 27/04/2011 - All clear!
    5 month - 16/07/2011 - All clear!
    9 month - 22/12/2011 - All clear!
    14 month - 22/12/2011 - All clear!


    Yesterday was history, tommorrow a mystery, but today is a gift. That's why it's called the "present"

  46. #46
    Join Date
    Feb 2011
    Location
    Virginia
    Posts
    54
    Dear Steve,

    Wishing you best of luck with your surgery today!

    Mike
    2/15/11 Changes noted
    2/11 AFP=4.3, hCG=11
    3/11 left I/O, X-ray, CT Scan Clear
    3/11 Classic Seminoma, AFP=3.2, hCG<1
    4/11 Second path: Seminoma
    5/11 All clear (CT, X-ray, AFP=4.3, hCG<1)
    8/11 All clear (CT, X-ray, AFP=4.4, hCG<2)
    10/11 AFP=4.8, hCG<1
    12/12 All clear (CT, X-ray, AFP=6.1, hCG<1)
    3/12 AFP=3.2, hCG<1
    4/12 All clear (CT, X-ray, AFP=4.7, hCG=1)
    8/12 hCG<1, AFP=5.0
    10/12 All clear (MRI)
    4/13 hCG<1, AFP=3.6
    5/13 All clear (MRI)

  47. #47
    Join Date
    Mar 2010
    Location
    Northern California
    Posts
    1,403
    Good luck with your surgery, Steve.

    I won't disturb you with my RPLND experience 36 years ago, they've made big improvements since then, from what I've read in here. You'll be back on your feet soon & on to your new job & put this behind you.

    Life does return to normal after TC, never doubt that.

    Dave
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

  48. #48
    Join Date
    May 2011
    Location
    Dyer, Indiana, USA
    Age
    41
    Posts
    28
    Best of luck! Sending prayers and good wishes to you and your family.
    5/23/2011 : Nailed in the nuts with a baseball.
    5/23/2011 : ER ultrasound found suspicious lesions on non-injured testicle
    5/24/2011 : Urologist confirms
    6/2/2011 : second opinion at Univ of Chicago
    6/17/2011 : Left orchiectomy, also found a hernia
    6/23/2011 : IT WAS NOTHING! A POOL OF BLOOD THE DOC SAID!

  49. #49
    Join Date
    Feb 2011
    Location
    South Dakota
    Age
    47
    Posts
    540
    S.P. Sorry I'm a little slow! Wishing you the best with your surgery today and a speedy recovery!!
    Tina, wife to Gene
    Right I/O 2/21/11
    60% embryonal carcinoma- 40% seminoma with L/V invasion, Stage 1B, Cat Scan- clear
    HCG- 1.2, AFP-1.5, LDH-normal
    BEP X 2 started 3-7-11
    Bleo canceled for 2nd round, lung issues
    EP 3-28-11 X 5 days, finished chemo 4-1-11
    F/U cat scan 4/14/11 - Stable
    3rd round EP as precaution because Bleo was cancelled, start 4-25, finished chemo 4-29-11, pneumonia 5-6-11
    6-1-11, 8-3-11, 9-7-11, 10-19-11, 11-16-11, 12-18-11, 1-18-12, 5-8-12 Clear

  50. #50
    Join Date
    May 2011
    Location
    Italy
    Posts
    576
    Steve, no prayers since I'm atheist, but an enormous "good luck" to you my friend.
    - early Apr/11: something is "wrong" in my righty
    - 16/Apr/11: ultrasound find a mass in it
    - 27/Apr/11: right I/O
    - 29/Apr/11: stadiation CT scan shows "all clear"
    - May/11: pathology: 1 cm Seminoma (90% necrotic), no RT/LV invasion
    - Surveillance....
    - March/13: relapse - para aortic node 1.7 cm, waiting for treatment...

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