Announcement

Announcement Module
Collapse
No announcement yet.

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

Page Title Module
Move Remove Collapse
X
Conversation Detail Module
Collapse
  • Filter
  • Time
  • Show
Clear All
new posts

  • 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, 03:32 PM.
    Young Adult Cancer Survivorship by Steve Pake
    April is Testicular Cancer Awareness Month!
    www.stevepake.com
    Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
    My Survivorship Thread | All of my Blogs
    C
    ONTACT ME ANYTIME!

  • #2
    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

    Comment


    • #3
      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

      Comment


      • #4
        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.
        Young Adult Cancer Survivorship by Steve Pake
        April is Testicular Cancer Awareness Month!
        www.stevepake.com
        Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
        My Survivorship Thread | All of my Blogs
        C
        ONTACT ME ANYTIME!

        Comment


        • #5
          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

          Comment


          • #6
            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
            14 June CT and CXR - All Clear

            Comment


            • #7
              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 November 2013- CT and markers normal http://www.tc-cancer.com/forum/core/...es/biggrin.pnghttp://www.tc-cancer.com/forum/core/...es/biggrin.pnghttp://www.tc-cancer.com/forum/core/...es/biggrin.png

              Comment


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

                Comment


                • #9
                  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!

                  Comment


                  • #10
                    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!

                    Comment


                    • #11
                      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!

                      Comment


                      • #12
                        Ugh...

                        Click image for larger version

Name:	278b3506228cd904c65aa1932b861051.jpg
Views:	1
Size:	39.6 KB
ID:	1240

                        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

                        Comment


                        • #13
                          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
                          sigpic
                          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

                          Comment


                          • #14
                            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.

                            Comment


                            • #15
                              [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.

                              Comment

                              Working...
                              X