anybody else have a lymphocele pop up in a critical area after RPLND surgery?

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  • S P
    Administrator
    • Feb 2011
    • 1650

    #16
    I had another renal scan yesterday, 3 weeks after the last one. Unfortunately the results were basically the same, if not slightly worse. Before flow was measured 70R/30L, but now the left was measured at 26%. I'll just call that the same, for my own sanity, and chalk it up to test to test variability. I was able to make it the full length of the test this time before my bladder exploded due to the lasix, whereas last time I couldn't quite make it and they had to extrapolate more. The good news is, still no sign of any obstruction, so the lymphocele is either gone or hasn't reformed in a critical area, so it looks like I'm out of the woods on that. Except that it looks like my left kidney may have sustained some pretty serious damage from this. It's not dead, there's still blood flowing to it, and it is working a little bit which is good, because otherwise I'd have to get another surgery to have it removed.

    I have my monthly follow-up visit with my DC area onco today where I'll be asking a lot of questions and getting my Cr numbers rechecked again. Will also be on the phone with Dr. Sheinfeld's office this week getting their read on it, or more accurately one of the nephrologists up there. The main question I have is the timeframe you'd expect to see improvement in - i.e. it'll be as good as it'll get xx months after clearing the blockage. It was probably stopped up for at least two months if not longer, and I'm now just one month out of the procedure that cleared out the blockage, so maybe it needs more time.

    My left kidney is still doing about 50% of what it should be doing though, so that's a whole lot better than 0 right?
    Young Adult Cancer Survivorship by Steve Pake
    April is Testicular Cancer Awareness Month!
    www.stevepake.com
    Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
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    • S P
      Administrator
      • Feb 2011
      • 1650

      #17
      Abdominal/pelvic CT scan tomorrow at 9am, w/o contrast to go easier on my kidneys. I still have to down nearly two bottles of this barium goop though by 7am. Just no injection. Yum.

      Ordered by Dr. Sheinfeld on behalf of Dr. Jaspreet Sandhu up at Sloan, who is their nephrologist. I sent all of my previous renal scan imaging up there last week which he reviewed. Was told by Jose, Dr. Sheinfeld's assistant, that Dr. Sandhu still thought my left kidney output was still being blocked or obstructed slightly, but not by enough to warrant a stent. Hence getting another CT scan done to try and see WTF might be going on, if anything. They're probably trying to rule out another lymphocele, or that the one they drained before hasn't reformed, which they wouldn't have been able to see on the renal scans.

      So I'll get that done tomorrow, get a hard copy of the scan, FedEx it up to Sloan on Monday, and should hear back from them later in the week. I also have my monthly chest x-ray and DC area onco visit next week where I'll get BUN/Creat checked again.
      Young Adult Cancer Survivorship by Steve Pake
      April is Testicular Cancer Awareness Month!
      www.stevepake.com
      Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
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      • julesTO
        Registered User
        • Jul 2010
        • 587

        #18
        Good luck SP,

        If there is still something going on, I hope it can be addressed in a noninvasive manner. Enough is enough already!
        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

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        • S P
          Administrator
          • Feb 2011
          • 1650

          #19
          Thanks Jules, yeah this is getting pretty tiring.
          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
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          ONTACT ME ANYTIME!

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          • Evtrai
            Registered User
            • Jan 2011
            • 195

            #20
            Hey SP, just wanted to wish you good luck and hope that this is solved once and for all.
            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

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            • hbr777
              Registered User
              • Oct 2010
              • 1397

              #21
              Steve, good luck and I hope this is the end of this for you. You've done your time.
              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

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              • S P
                Administrator
                • Feb 2011
                • 1650

                #22
                It's great that my wife is a doc and works right next door to a radiology office and knows the radiologists there. Instant gratification, so that I can start worrying sooner.

                I do still have a substantially sized lymphocele that does appear to be crimping the output of my L kidney. Maybe not as bad as before, but it's still there and has reformed. So looks like I'll need a stent after all. But wait, there's more. The radiologist also thought that my tied off spermatocord was enlarged, and thus suspicious for tumor? Great. But he only had the June post-chemo scan to compare with, and not the 4 month post-RPLND scan which is a whole lot more recent (2 months old vs nearly 6 months), but was done at Sloan. He thinks it's probably just fluid, but because the scan was done without contrast he couldn't tell.

                So now I get to sweat it out for the next week while I fax and mail a ton of stuff everywhere and then wait for answers. Will probably need to get a stent, so will need an appt with my local urologist. Will they want to drain the lymphocele again? And WTF is up with this "thing" near my spermatocord and what is it? Praying it's just something dumb and not the dreaded "r" word that nobody wants to hear.

                Ugh...
                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
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                ONTACT ME ANYTIME!

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                • julesTO
                  Registered User
                  • Jul 2010
                  • 587

                  #23
                  Good grief, AS IF you don't have a million better things to do than worry about this.

                  First of all, although I am in no way qualified to say this, I refuse to believe whatever the deal is with your spermatic cord is a tumour. I mean, given the details of your case (specifically, absolutely nothing found during open RPLND conducted by top surgeon in the world + normal markers), it just doesn't make sense. So yes, this is another annoying bump in the road, but it isn't THAT bump. It just can't be.

                  About the stent - can this be done laparoscopically? I sincerely hope so. Maybe you can find a urologist that specializes in this technique. I had laparoscopic surgery last year and couldn't believe how quickly I bounced back. I mean, no surgery is 'easy' exactly but I'd take the recovery from that over the alternative any day.

                  I'm really sorry the saga continues. And I'm REALLY glad you bought yourself that car.
                  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

                  Comment

                  • hbr777
                    Registered User
                    • Oct 2010
                    • 1397

                    #24
                    I agree with Jules. No way could it be a relapse - all of your nodes were negative, right? In a way, I HATE these scans. They show too much that is nothing. Then we have to freak out about it.

                    Will they have you wait it out, or will the rescan soon?
                    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

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                    • S P
                      Administrator
                      • Feb 2011
                      • 1650

                      #25
                      Thanks Jules and Heidi. I SINCERELY HOPE SO. I'm here at work with my office door shut. Not having a breakdown or anything, but definitely aggravated and just don't want to be bothered by anybody or anything right now. Just waiting to get a text from my wife that the official report is done so that I can swing by and pick it up and then FedEx it straight up to Sloan. The FedEx facility here is right next to my office.

                      The radiologist told my wife personally that he thinks it's probably just fluid and not a tumor or anything, but because the scan was done w/o contrast per Sheinfeld/Sandhu, the contrast stuff is really rough on your kidneys, he couldn't tell what it was and thus has to say what it "could be" if he doesn't know, regardless of how unlikely. He has no visibility on that. I think it's standard radiologist "CYA" verbiage. Anyhow, he doesn't have the October post RPLND scan to compare with, which he really needs. The RPLND is so invasive and messes everything up in that area so badly that even Sloan says all the previous scans are going to be useless and that you have to get a new baseline done. I'm guessing this "thing" also appeared on my October scan at Sloan and they saw it and know about it, but didn't mention it because it's nothing. I'm stupid and should have insisted on getting a hardcopy of the October Sloan scan along with the radiologist's report up there, because I knew something like this might come up. I'm going to have them send me a hardcopy so that the radiologist here can take a look at the October baseline as a comparison also. So I'll have answers on this from two different sets of eyes early next week hopefully.

                      The absolute most likely answer is that it's just another pocket of fluid or something dumb like that as a result of the RPLND. Yes, highly unlikely that it's a tumor or in anyway cancer related.

                      Originally posted by hbr777
                      In a way, I HATE these scans. They show too much that is nothing. Then we have to freak out about it.
                      Exactly. Praying that's the case.

                      Anyhow, made an appt with my local urologist here who did my I/O back in February. Besides a follow-up a few weeks after in March, I haven't seen him since. Soonest appt he had was Dec 20th. So if Sloan recommends a stent, he's the one that will do it (not going up to Sloan for that), and maybe I'll get it as a Christmas gift. LOL

                      Jules, my wife says they do stents like these outpatient, and shove it up through your urethra. Probably via CT guidance, but I'm not sure. So they don't even need to do it laproscopically or anything. More or less just like getting the I/O done, and possibly under only moderate sedation like a Mediport. Not sure. I'm so used to that sort of stuff by now (I/O, mediport in, mediport out, lympocele drained) that it doesn't even budge my anxiety meter anymore. It's kinda fun actually, getting to go get all hopped up on drugs and saying goofy things while being awake. Everything seems so funny!

                      I'm going to drain my worries away with a beer tonight, and then just wait to hear back that the most likely answer mentioned above is the correct one.
                      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
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                      • val
                        Registered User
                        • Feb 2010
                        • 625

                        #26
                        Hi Steve,

                        Sorry to hear you are going through this worry but as the girls say with your nodes clear etc that it should not be anything to do with "r". Hoping that your wife has report etc now and that you can get to the bottom of this asap.

                        Praying that all is well.
                        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

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                        • S P
                          Administrator
                          • Feb 2011
                          • 1650

                          #27
                          Thanks, Val.

                          Waiting for my wife to get home with the report and CD so that I can run them over to FedEx and first overnight it to Sheinfeld/Sandhu tomorrow. Want them to look at this Friday if possible and get back to me on this "thing", so that I can hopefully not worry about it over the weekend. And although he's not a TC expert, I do have my monthly visit with my DC area onco tomorrow that I'll be able to bounce this off of, so hopefully I'll get some reassurance from him as well. This uncertainty stinks.
                          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
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                          ONTACT ME ANYTIME!

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                          • julesTO
                            Registered User
                            • Jul 2010
                            • 587

                            #28
                            On a side note, have you guys heard of or used Dropbox? It's like a virtual hard drive. That's how we've been getting our scans to Shaun's surgeon in Hamilton. Rather than courier them, I just upload them to this site, invite the surgeon to view the files and he has access immediately:



                            It's hassle-free (once you get the hang of it) and literally free. Has taken one less "to do" off the old list.

                            Anyway, just wanted to share!
                            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

                            Comment

                            • hbr777
                              Registered User
                              • Oct 2010
                              • 1397

                              #29
                              Originally posted by S P View Post
                              The RPLND is so invasive and messes everything up in that area so badly that even Sloan says all the previous scans are going to be useless and that you have to get a new baseline done. I'm guessing this "thing" also appeared on my October scan at Sloan and they saw it and know about it, but didn't mention it because it's nothing.
                              I think you've hit the nail on the head.

                              This is deja vu. The same thing happened to my husband. We thought we were in the all clear and it turns out the previous scans (in his case of the lung) were useless because the lung had been deflated by the tumor and then reinflated so all of the @#$%^ nodules changed position in the lung, and could not be compared on the CT. Luis needed a new baseline - and that meant waiting another 3 months to see if anything had changed from THAT baseline.

                              It makes you want to scream.

                              My mantra: this disease has periods of calm and moments of sheer freaking out terror.

                              Your calm is coming back.
                              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

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                              • S P
                                Administrator
                                • Feb 2011
                                • 1650

                                #30
                                OK I feel a bit better now that I've read the actual radiology report.

                                Within the right spermatic cord, there is a localized mass or fluid collection which measured approximately 3.5 cm SI x 3.0 cm RL x 2.0 cm AP. This mass now appears larger when compared to the previous study demonstrating a density measurement of approximately 20 HU, thus suggesting a possible postoperative seroma or lymphocele.
                                Dude that's pretty friggin big. I went into the bathroom at work and felt around down there. It does feel very soft and fluid like there, and it's definitely a bit larger on the right side than the left. Spongey/balloon like feeling. I want to say it's always been like that, but can't be sure. So not too worried about a mass anymore, and the density measurement says probably fluid too. So the question is does the October study show this, is it a problem, and what to do about it if anything?

                                Phweew.

                                Monthly DC area onco visit is next week, not tomorrow, so I'll definitely have him take a look at this and get his take on it.

                                As for the original lymphocele... 5 cm SI x 3.3 cm RL x 2.5 cm AP sounds just as big as before, so it's definitely come back. Dr. S quoted me "4-5 cm". From what I've read, there's no real consensus on how to drain lymphoceles, and results can sorta be hit or miss on whether they come back or not.

                                Will see what Sloan wants to do. If they just want to do a stent and say the other stuff can be ignored, I'll probably get it done here in the DC area. If they want to do a stent *and* do more lympocele/seroma drainage, I supposed maybe I'll be heading up to Sloan again, depending on how they want to manage it.

                                So not too worried about the dreaded "r" word anymore, but man this lymphocele stuff sure is annoying.
                                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
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                                ONTACT ME ANYTIME!

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