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Treatment options and Intro

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  • Treatment options and Intro

    Hey folks, long-time listener, first-time caller. 32 y.o. in Denver area.

    I thought Iíd share my TC story, mostly hoping for input on what direction to follow in future treatment from those that have gone before me. I am now two weeks post I/O.

    Started noticing right testicle enlarging and hardening September or October 2017-ish. Bump appeared on the front of the testicle early to mid-November and seemed to enlarge daily. Skipped family practice, went straight to urologist on 11/27. Within seconds of feeling what I had felt the Dr determined I/O was needed. He sent me for an ultrasound then managed to schedule surgery for the next day, 11/28. Aside from the shellshock, recovery has gone well. I managed on Tylenol and ice, felt no need to use the Percocet (didnít want to deal with the constipation). Swelling is nearly gone, incision still feels tight, but improves daily.

    Pre-OP bloodwork: AFP 2.7 ng/mL, HCG 14 mlU/mL, LDH normal
    Pathology: Seminoma at 3.8 x 3.8 x 3.5 cm, confined to testicle, margins negative, no extension to epididymis or cord, no LVI identified
    CT/Chest Xray: Clear, no evidence of metastasis

    Dr placed me between S1A Ė S1S. Iíve been referred to an oncologist and will see him Jan 2018, after fully healed. They plan to redo bloodwork then. Urologist hinted at two treatment options, surveillance or one round chemo, but did concede I should refer to the oncologistís wisdom from here (oncologist Iím seeing specializes in kidney, bladder, prostate, and testicular cancers I hear).

    What are your suggestions? Primary concern: my wife and I were planning on kids in the very near future. I want to preserve whatever fertility I have left. This makes me lean away from chemo. However, Dr states 15% chance of recurrence sans chemo, with a ~1% chance with chemo. That slimming of the odds sounds appealing and makes me lean towards it.

    So to sum it all up, to chemo or not to chemo? Thanks to all in advance for your help.

  • #2
    Sorry to hear you go through this!! There's no right or wrong, just whatever makes you feel comfortable. I opted for surveillance and ended up needing chemo several months later, but in any case before chemo you have the chance to do a sperm sample for storage for this precise purpose. Having done chemo, there's damage to the sperm, but still good enough for IVF the specialist told me and they are good to use either frozen or live, so you're probably safe either way!!
    July 2016 - Left I/O
    December 2016 - BEPx3
    All clear for 1 year!

    My Testicular Cancer Support Kit
    First Oncologist Visit Checklist
    Simplify Cancer Podcast


    • #3
      Agreed that there are no bad decisions, except maybe radiation therapy at this point. As long as your beta-hCG drops to the normal range and I think as long as you are comfortable, given your desires to start a family that surveillance would be what I would do if I was you. As long as the thought of surveillance doesnít scare you. Another consideration is that if in the small chance you relapse and need full-dose chemotherapy down the line are you the type of person that is going to beat yourself up because of the decision to do surveillance? If so, or if the anxiety of not getting a dose of chemo now may affect you in the future then maybe a dose of carboplatin is better?

      The oncologist may have some more information on your risk of relapse and the effectiveness of the carboplatin dose x1. I believe that the risk of relapse after the carboplatin is going to still be higher than the 1%. The prognostic factors for relapse for stage I seminoma are not perfect by any means but a recent article from SWENOTECA the group in Sweeden/Norway may be of some use to share with your MDs as well as they tried to look back at their use of carboplatin and relapses.

      I hate to bring it up but another reality is that you may want to get a semen analysis and see where you are if you are really favoring the carboplatin. Long-term effects on sperm are not seen that much with carboplatin but it is usually advised to wait a year if not two after chemotherapy to start trying to conceive. However, if there are any issues with your fertility now (for example for some reason your sperm counts are low) and you may need some kind of sperm extraction because the likelihood of conceiving naturally is low, then why not extract now and get the carboplatin if you are strongly favoring it. [Again this is just a what if situation to consider]

      Oct. 2005 felt lump but waited over 7 months.
      06.15.06 "You have Cancer"
      06.26.06 Left I/O
      06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
      06.30.06 It's Official - Stage I Seminoma
      Founded the Testicular Cancer Society
      6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

      For some reason I do not get notices of private messages on here so please feel free to email me directly at if you would like to chat privately so as to avoid any delays.


      • #4
        A 15% chance of recurrence equals a 85% chance of already being cured. Think about that. If you could win every bet in a casino 85% of the time, how rich would you be?

        If your primary concern is kids, bank some sperm now, but realize that adoption is always an option,n there are lots more kids out there needing parent than there are parent that are willing.

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


        • #5
          I grew up in a household where cancer was a constant threat. The treatments my brother and i had to watch my mother endure had a very negative effect, and the possibility of it coming back (which happened more than once) was rough on us too. My brother has some serious mental problems from it, and my school and career choices were impacted by having to care for her later on. Having a parent with cancer is rough on a kid, and my dad had to balance providing for everyone with caring for her, so it's rough on the spouse too.
          So speaking from that perspective, I think banking sperm and doing chemo to minimize the chances of your future kids having to go through what we went through is a good idea.


          • #6
            Thank you all for your thoughtful insight. I am leaning heavily toward surveillance, and I think clear bloodwork results (normal HCG) in a few weeks time would push me over the edge. Joe, thank you for letting me know what the IVF specialist said about sperm post-chemo, that is good to know. Mike, thank you for the article link, I come from a science-heavy background (not medical related) so peer-reviewed papers mean a lot to me. It is good to know that the rate of recurrence with carbo is not as low as my Dr suspected. Dave, I do need to focus on the 85%, huh? That is a good way to view it. Metcwife, you are very right, if/when I have children it would be in their interest to make sure I'm around and as healthy as I can be. Thank you all, I'll update when things progress.


            • #7
              Wishing you the best. Definitely bank sperm, and get a sperm analysis now. Let us know what you decide.
              Son Grant
              dx 12/21/16 at age 17

              BEP x3
              Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
              2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
              Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.


              • #8
                I would do active surveillance if I was in your position.
                Age 31 - Portland, OR
                01NOV16- Pain in right testicle, palpable mass
                13NOV16- R I/O. Markers normal
                27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
                06DEC16 - CT scan clear
                09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
                03JAN17- Ended 1xBEP; start surveillance
                18MAR17-2nd pathology report shows 90% EC , 10% seminoma


                • #9
                  Assuming that cost isn;t an issue, you really can't go wrong banking sperm, You don't have to use it, but if it's needed, you will glad to have taken that step.


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


                  • #10
                    Update time:

                    Had my first consult with the oncologist, not much was said that I hadn't already heard from this forum, from my own research, or from my urologist. We talked about a single round of carboplatin or surveillance, redid my blood work, and that was it. He didn't attempt to sway me one way or the other. I really wish he would have had some sort of opinion, but I suppose it is my decision in the end. He just said to call back in a few days with my decision.

                    I waited until I got the blood work back to decide. I got the blood work results a couple days later, AFP remains normal, HCG returned to normal (from 14 to <1, yes!), LDH remains normal. After hearing the blood work results I called the oncologist and told him I'd go for surveillance. I'll be repeating the chest Xray/CT scan and blood work every 3 months for the first year, then every 6 months during the second year. He said we'd talk about year 3 when we get there. Sound normal?

                    Now I think I'll get a referral to a fertility specialist to see where things stand, perhaps bank some sperm in the case things go south. I feel optimistic, especially seeing my HCG levels normalize post I/O. Thank you all for your help!