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Is RPLDN always the right decision in Stage 1 patients?

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  • Is RPLDN always the right decision in Stage 1 patients?

    Hello all. This is a great forum and it has been such a huge help reading all of your stories. This is all scary and new to me, but reading other's experiences has definitely calmed me down a bit.

    Last Monday my right testicle began hurting and by Tuesday afternoon I was in the ER. It was there that they did the ultrasound to uncover my tumor. Of course from there the path led directly to removal. I was very lucky because from pain to I/C was only a day and a half. I went for my CT scan only 2 days after the surgery. Understandably I was trying to compress the timeline because I didn't know how long I had been carrying this disease.

    The pathology of the tumor turned out to be a little odd (according to my oncologist and urologist). It was 90% teratoma, and 10% seminoma. There was no vasular/lymph invasion. My tumor markers came back normal. My CT scan is clean. It appears I caught it very early. They place me in stage 1, with zeros across the board.

    This all sounds wonderful and I certainly feel blessed. But my oncologist is now laying a choice in front of me that is basically between observation and RPLND. I definitely do not want to have this recur, but the surgery scares me to death. And with my personal case, it appears that my chance of recurrence is pretty low. So now I must weigh the possibility for recurrence against the surgery and potential side effects from that.

    I am really confused because I feel like my decision making is being driven by my fear of surgery and maybe not the thing that may give me the very best chance to erradicate this thing. I am pretty sure RPLND is the "gold standard" choice here, but what if we are talking about only an 8% chance for recurrence in my specific case?

    I welcome all of your thoughts. And pleased to meet you.

    -Eric

    07/07/2010 - Tumor in testicle detected via ultrasound
    07/08/2010 - Right I/O
    07/09/2010 - Diagnosed Stage 1 (80% teratoma, 20% seminoma)
    07/2010 - CT - All clear
    11/2010 - CT - All clear
    02/2011 - CT - All clear

  • #2
    Eric, Welcome to the forum!

    As I am sure you have already been told or read your self, with your early stage there is a very high probability that you are already all clear. I always try to urge the "if it isn't broke, don't fix it" rule. With no sign of invasion I would opt for very strict surviellance. Make sure you do your research and inform yourself by searching this forum. This topic comes up alot and there is no 'gold standard.' both are good in your situation.

    If you do go Surgery, make sure you know how many of these your doc has done recently. Nerve sparring is the method of choice to help decrease the chance of retrograde. again do your research, know what you are about to do and attack it head on.

    Keep laughing, find the funny.

    John
    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

    Comment


    • #3
      While I don't know what the odds of a relapse are specifically in your case, I understand why an RPLND is, for lack of a better term, still on the table. Teratoma can only be treated surgically, and an RPLND would have the dual purpose of a) giving you a definitive stage and b) curing you if you were to have any nodal metastases present.

      That said, the fact that you are stage I-A means that the odds are really good that you have been cured by the I/O alone. Your surveillance will, however, require frequent CT scans particularly because you have not shown elevated tumor markers. Just make sure that if you do elect the surveillance route, you stick to all of your follow-ups (and if you decide to go the RPLND route, ensure that you have an experienced surgeon perform the operation).
      "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! I consider myself cured.

      Comment


      • #4
        Eric,
        Welcome to the forum, you've found the best place for information.

        I would strongly consider surveillance. I had 100% teratoma and was given the same 2 choices as you. I finally decided on surveillance since there was no evidence it had spread. It's not an easy choice but I had a hard time with the idea of major surgery when there was no evidence it had spread. That being said it is tough mental game and you have to stay on top of the surveillance schedule and keep all documents.

        The one good thing about teratoma is that it tends to grow really slow and usually doesn't spread on its own. Do you know if the teratoma was mature or immature? Immature tends to grow and spread more that mature teratoma.

        Either choice will be a good option, but if you go with the RPLND make sure you go with an experienced surgeon. It comes down to which one give you the best piece of mind, but as Fed stated the odds are in your favor of already being cured.

        Scott
        Pure mature Teratoma
        Stage 1
        Surveillance
        5/12/09-Diagnosed with TC
        5/14/09 Left I/O
        5/20/09 All Clear
        8/27/09 All Clear
        11/19/2009 All Clear
        2/25/2010 All Clear
        5/6/2010 All Clear- 1 year milestone
        9/16/2010 All Clear
        1/20/2011 All Clear
        5/26/2011 All Clear- 2 year milestone
        12/8/2011 All Clear-2.5 years
        6/21/2012 All Clear-3 years.

        Comment


        • #5
          Wow, thanks for the info guys. Every time I read something on these forums I feel a little better and a little more knowledgable.

          Scott - I don't know if it was immature or mature but I will find out. It probably says on my pathology and maybe I just glossed over that part.

          Honestly, as you can probably tell, I am a big surgery chicken (as I imagine most people are) and so I lean towards surveillance. But I am also the type of person who doesn't like the anxiety hanging over me. Let me as this - if it does recur and I've been following the strict rules of surveillance, do I still have just as high a survival chance as if I did the dissection now?

          07/07/2010 - Tumor in testicle detected via ultrasound
          07/08/2010 - Right I/O
          07/09/2010 - Diagnosed Stage 1 (80% teratoma, 20% seminoma)
          07/2010 - CT - All clear
          11/2010 - CT - All clear
          02/2011 - CT - All clear

          Comment


          • #6
            Eric,
            I don't think mature vs immature would be a major factor in the decision. Others whom are more knowledgeable than I am can correct me if I'm wrong,but the cure rate is pretty much the same.
            The surveillance protocol is setup so as to catch any relapse early. With every case being a little difference my Dr and I decided that if a relapse did occur then I would have to have the RPLND at that time but with 100% teratoma felt that the relapse rate was lower than normal.

            The first few weeks were the roughest for me, mainly the mental frustration as to accepting what I had and everything is thrown at you so fast you don't know if your coming or going for a little while. At the 6 months mark on surveillance I started settling down a lot and not worrying about it quite so much.

            Still get a little stressed when I go for the ct scans and blood work but It's just part of life now I guess.
            Scott
            Pure mature Teratoma
            Stage 1
            Surveillance
            5/12/09-Diagnosed with TC
            5/14/09 Left I/O
            5/20/09 All Clear
            8/27/09 All Clear
            11/19/2009 All Clear
            2/25/2010 All Clear
            5/6/2010 All Clear- 1 year milestone
            9/16/2010 All Clear
            1/20/2011 All Clear
            5/26/2011 All Clear- 2 year milestone
            12/8/2011 All Clear-2.5 years
            6/21/2012 All Clear-3 years.

            Comment


            • #7
              From what I know about teratoma is that it is a slow growing cancer. Since it didn't break the two walls around the testie, it is more than likely confined there. If it was another type of germ cell, Choriocarcinoma, Yolk sac or even Embryonal then I'd think considering the RPLND, as I just recently did.

              The thing is, if it has spread it will eventually show and like Fed said, the only way to remove it is surgical.

              In the end, we all can give you advice from our experiences but we all made choices that followed our heart. So, you should do what you think is best.

              My vote: surveillance.
              5/4/2010 - Diagnosed with TC
              5/20/2010 - Right I/O - 1.8cm - no LVI - 70% Seminoma - 30% EC - Less than 1% Teratoma - Stage 1A
              6/7/2010 - RPLND Scheduled. Oncologist requested for second opinion.
              6/15/2010 - Oncologist seen and Chemo not an option for stage 1A.
              7/6/2010 - Right sided template RPLND - Surgeon Dr. Stephenson(Huntsman Cancer Center)
              7/12/2010 - Pathology clean on surveillance.
              11/11/2010 - Clean

              Comment


              • #8
                Hi Eric,

                Since you don't have any vascular/lymphatic invasion I would *personally* probably go the surveillance route. My pathology though was different to yours (2.2cm seminoma and a 3mm differentiated teratoma, vascular invasion).

                It was explained to me the teratoma component can be tricky because radiation or chemo doesn't work on it. It needs to be surgically removed. Yours also does not produce markers (mine produced hCG for some reason, unless I read the report wrong so if you do go surveillance you will probably first see it on the CT (some of the veterans feel free to correct me). RPLND would discover if there is anything that is too small to currently detect. If I recall correctly, teratoma is also very slow growing.

                As I say though I am new to the subject, I think most of it comes down to your gut feeling and what makes you feel less stressed. I also have repeated a lot of what the veterans have told me with my situation and probably parroted on in this one too.
                Initial diagnoses: Elevated hCG, Left I/O 17-June-2010. Prosthetic implant.
                Pathology: Stage 1b, Seminoma/Teratoma
                Treatment: Surveillance. hCG normalised 07/10
                Relapse: Elevated hCG. 3xBEP finished 24/01/2011

                Comment


                • #9
                  To answer your question specifically, "no", its not always the right method.

                  With your case, I do not know the procedures, and expected outcomes, but I will tell you I opted for chemo as a Stage I with embryonal.

                  I did this because embryonal is extremely aggressive, yet its susceptible to chemo. If we did an RPLND and they found traces, I do chemo anyway. I figured, let's do the chemo, skip step 1 and just be safe.

                  Nearly 2 years later....I'm fine.

                  So, with my case, i didn't feel it was the most appropriate route.

                  Comment


                  • #10
                    Eric:
                    You really have no bad choices here. I would probably go the surveillance route and save that surgery for a time when I was sure it was needed. If you stick to the surveillance schedule and a recurrence happens your chance for a cure are virtually the same.
                    I have to tell you I didn't have the disease, my son did and I'm sure he would opt for the RPLND. He felt better being aggressive.
                    Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                    Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                    Comment


                    • #11
                      I'll tell you what Dr. Einhorn told us in my son's case "you have a 50/50 chance of being cured right now. We can always do the RPLND later. Keep it in our pocket for possible use. If I were you I would wait."

                      My son decided to wait. It's been 2 years and he has not needed the surgery.

                      It still comes down to a personal decision.

                      Mary Ann
                      CaregiverSon Josh 23yr Dx 3/5/08 IIIC NonSeminoma affected lung, kidney liver back & tumor/clots in vena cava & celiac artery 3/7/08 L I/O 3/30/08 PostOp surgery 4XEP (VP16 & Cisplatin) 3/12-5/25 LDH > 5000 & AFP 145 (3/5 pre-op) LDH 563 & AFP 4 (5/26 after 4Xchemo) off blood thinners 3/18/09 Surveillance per Dr E 8/4/08 *1/2012 ALL CLEAR!

                      Self 1/29/09 dx thyroid cancer metastasized to right lung 2/10 thyroid removd 4/17 rx RA131 5/11/10 &7/16/10. 1/12survellience

                      Comment


                      • #12
                        Thank you all for the replies. It has really helped me.

                        07/07/2010 - Tumor in testicle detected via ultrasound
                        07/08/2010 - Right I/O
                        07/09/2010 - Diagnosed Stage 1 (80% teratoma, 20% seminoma)
                        07/2010 - CT - All clear
                        11/2010 - CT - All clear
                        02/2011 - CT - All clear

                        Comment


                        • #13
                          Quick update.

                          I heard back today that the second opinion on my tumor pathology came back and they said they bascially concurred except they feel the percentages were a little off. The pathologists at University of Michigan believe the tumor to be 80% teratoma and 20% seminoma. My oncologist doesn't believe that changes the options.

                          Question: Maybe this is overkill, but would it hurt to go to IU and have them look at my case? It is only a 5 hour drive for me. Certainly if I eventually have RPLND I will want to do it there so would it make sense to bring them into the picture now, even though everything seems straight forward?

                          07/07/2010 - Tumor in testicle detected via ultrasound
                          07/08/2010 - Right I/O
                          07/09/2010 - Diagnosed Stage 1 (80% teratoma, 20% seminoma)
                          07/2010 - CT - All clear
                          11/2010 - CT - All clear
                          02/2011 - CT - All clear

                          Comment

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