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  • Newly diagnosed

    Greetings I was diagnosed early May. Found lump on right testicle and then got ultrasound. Found 2 cancer suspect masses. Has righty removed 5/25. I have healed up very well and fast. All my markers were negative before my removal. Pathology was 60 % seminoma and 40% EC LVI was present Margins negative No spread to spermatic cord. Was feeling good that it was isolated in the testicle. I had a CT scan done on 6/8. Found 3 nodes in abdomen 1.6cm x 1.7 cm and one that was 3.1cm x 1.8 Everything else on scan was clear. Doctor staged me at Non seminoma stage IIB. Went back to doctor today and she recommended 3 rounds BEP. I have read all the side effect horror stories and this really scares me to go through. She told me to do the chemo and if the nodes go back to normal size then active surveillance. If they don’t go back to size the she said RPLND “ nerve sparing “ would be done. Everything I’ve read and researched said having the RPLND after chemo is horrible. Why would she not recommend I do that first and see if everything is good. Then maybe do just 1 round of chemo after? I have talking to Mike and getting great advice from him also on here. Thank you Mike!! I just wanted to tell my sorry so far and see if everything seems in line or should I be considering different options? I’m 37 years old and I’m active duty Navy. I have 3 kids under 10. I feel lost right now and very scared for the road ahead and for my children. I don’t want to die from this. Any advice on my situation would be greatly appreciated. Thank you so much everyone. Respectfully Jon

  • #2
    Sorry to welcome you to the forum.

    What your doc is recommending seems to be the standard of care these days, you won't go wrong following her advise. Chemo is certainly no fun, but not as bad as you are thinking. You get through it, there are thousands of us who have. Post chemo RPLND is more difficult, but for the surgeon, not you. From those who've done that, it doesn't seem to be any different from the patient's experience. Hope that helps.
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

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    • #3
      Thanks for the response Dave.
      I guess I’m still torn if I should ask to do RPLND before chemo?
      I think the reason she said it wasn’t a good idea is because I had 1 of my 3 nodes measuring at 3.1CM. I guess that would means it’s cancerous?

      What would be the benefit to having the RPLND done first, then blood test to see if levels are still normal, then do surveillance. Or it comes back I guess I would do chemo then? What are the chances that a RPLND cures me and I don’t need chemo?

      I’m really scared of goofing through chemo.

      My levels were all normal
      3 weeks ago before the surgery. Any reason to think they wouldn’t be now? I just got blood drawn today.

      Thanks Dave

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      • #4
        Sorry for typos.

        * going through chemo

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        • #5
          Hello,

          Sorry to hear about your diagnosis but it sounds like you have good risk disease, which means your prognosis is very good.

          My understanding is that the pre-chemo RPLND is done with low volume stage 2 disease, whereas high volume stage 2 (large and/or numerous tumors) begins with chemo. I’m not sure why, but I’d guess that with high volume stage 2 it is likely that there is significant amounts of disease outside of the visible tumors that requires systemic therapy like chemo. This can be true even with negative markers.

          If you would like to explore the RPLND before chemo I’d go to a renowned cancer center like MSK, MD Anderson, or Mayo Clinic and get a second opinion. In general, it’s very important to get the most experienced surgeon possible for the RPLND so I’d try to go to one of those places for that anyways.

          Chemo is definitely scary; personally I was much more afraid of it than the cancer itself! The good news is that most of the really scary side effects are pretty uncommon, and even with the common ones like neuropathy, the typical person doesn’t get it too bad. Personally I got 0 neuropathy from BEP and only a little bit in my feet from high dose chemotherapy, which is likely to improve given that it was mild. The nausea was pretty nasty though. It will probably be the longest 9 weeks of your life, but it will still be over pretty quickly.
          Turned 22 September 17,2020 Oct 20, 2020 Dx Stage 2c (bulky disease) nonseminoma. 90% teratoma 8% embryonal carcinoma 2% yolk sac. bHCG 154. Right I/O
          Nov 2, 2020. BEPx1. bHCG down to 6.3
          Nov 23, 2020. BEPx2 bHCG <1.2 (normalized)
          Dec 14, 2020. BEPx3. bHCG <1.2 Feb 3, 2021. Markers rising. bCHG 86
          Feb 22, 2021. TIPx1. bHCG down to 1.6
          March 15, 2021. TIPx2. bHCG down to .6
          April 19, 2021. Stem Cell Transplant 1. GemDMC HDCT
          May 25, 2021.Stem Cell Transplant 2. ICE HDCT

          Comment


          • #6
            Here is my take: if they miss even one cell in surgery, you are back where you started in a little while, Chemo rarely misses anything. Most reports of post chemo RPLND seem to show necrotic tissue or teratoma. Chemo is unpleasant, but nothing to be feared.Having had both, & having had multiple long term consequences from my RPLND that have put me in the hospital 3 times, I would do chemo in your situation. Others here might disagree,There is no right answer.
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP

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            • #7
              Thank you all for the advice and information!

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              • #8
                Hi ..
                Sorry to welcome you here.
                About the scares: don't worry you will be fine - stage III A here
                I got through with 3 BEP
                And for the doc's advise : i think thats best way to proceed.
                RPLND - I think you wont most probably need it but that shouldn't an issue too, as right now it is not needed.(best to get it when your doc thinks you absolutely need it)
                Chemotherapy is really scary but human body is really hard to kill and recovers very well.(you seem fit as you're a military personnel so you should do well than most here)
                Chemo days goes by fast and you'll put that behind and forget you ever had this bad part in your life.
                painless lump rightside over 5 month
                tumor markers- afp-14.9 hcg-773
                06/2018- right i/o

                path- teratoma/yolk sac/chorio

                afp down at 2.3 hcg-3303

                ct- no lymph involvement, lung mets (stage IIIA)

                07/2018- start of 3xBEP +1EP

                changed to 3xBEP

                complete response

                07/2019- 9 months all clear(bhcg<0.1 or undetectable from 5 months)

                10/2019 - ct picked up small nodule on other lung (3mm) blood work normal
                (one year mark after chemo)

                11/2019- afp-0.7 bhcg-2.9

                Comment


                • #9
                  *Update

                  Decided on 3 rounds BEP
                  PFT June 22nd.
                  Port goes in July 1. Does that hurt?
                  Another CT scan July 8th
                  I start chemo July 19th.
                  Took more blood last week and markers normal ...again.

                  I asked him if I was in any danger of it spreading to organs or anywhere else if I waited a few weeks to start due to a family vacation I had planned for my kids.
                  Doctor didn’t seem to think there was any concern to wait until July 19th to start, so I guess that’s a good thing.

                  I’m really scared about going through chemo.

                  Doctor told me the chemo was 98 percent effective in curing this? I’m scared though my 3 lymph nodes won’t return to normal size and then have to go through RPLND after. I hope I’m wrong though...

                  I’m hopeful for the most part at this point ,but just scared of death is chemo right now.

                  Schedule isn’t to bad..
                  M-F 4-5 hours for 1st week of every cycle, then just The next to Mondays for 30 min to complete a cycle. I thought it would be a lot longer then that to be honest.

                  I’m Ready to be cancer free and move on with my life!!!

                  Thanks for listening as always everyone and best of luck to everyone currently going through this.

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