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Need information on pure mature Teratoma...

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  • #16
    Everything that the doctor told you is spot on. Teratoma, since it behaves like an normal cell, is a slow mover, so it is unlikely that it will skip the nodes. In your son's case, the RPLND has two purposes: further staging and excising any micrometastases that may already be in the nodes. If the RPLND shows nothing, odds are he will be done with active treatment and will go on surveillance. If the RPLND shows some teratoma, then the surgery also had the purpose of being curative. Frankly, I think the RPLND is not such a bad idea under these circumstances. As far as the time frame for the surgery, typically docs don't like to wait more than 8 weeks post-I/O, but this is merely a guideline and not an iron-clad rule. The key thing here is that the surgery be performed by someone experienced.
    "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.

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    • #17
      Any C and anyone else that has knowledge on the subject, I have just been diagnosed with 100% Pure Mature Teratoma post IO two weeks ago. No VI, Bloodwork shows no tumor markers, CT scans clear (apart from small lymph node in the inner-aortocaval region which measures .8cm, but this I'm told just needs to be monitored for now), and chest xrays were all clear. Meeting oncologist tomorrow, I am guessing that he is going to recommend surveillance (but this is only a guess, I have no idea). Do any of you have any input on the questions that I should be asking him.
      Last edited by Derryquinn; 10-28-15, 01:49 PM.

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      • #18
        I am sorry that I dodn't have any real knowledge on Pure Mature Teratoma. As noted, it is very rare, like <5% of all TCs and even more rare to be seen in adults.

        Here's a recent and good publication that I found on the topic. Please read it as it may help to come up with some questions for your appointment tomorrow. Please let us know how the appointment goes.

        http://www.omicsonline.org/open-acce...57.1000124.pdf

        - Matt
        March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
        March 13th: Left IO 100% Classic Seminoma
        6.3 x 5.1 x 3.8 cm, no invasion of anything
        LDH never fully normalized
        Stage: IS
        Watchful Waiting
        May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
        May 12th: started 3xBEP
        Neupogen during Cycle 2 and 3
        July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
        August 4th: Post Chemo CT/PET scan
        September 4th: Port removed
        Jan 9th 2019: 4.5 YEARS ALL CLEAR !

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        • #19
          Thanks for your reply Matt. Oncologist recommends servelance - ct, blood and xray every 4 months for the next 2 years. He said he will give me 3x bep if it relapses but told me that there is only a 15% chance of that happening. On the .8cm node, he is going to do a ct scan on that in 30 days to verify it's not growing, he said if it's growing it's cancer, but he is hopeful that it's nothing as I got my original ct scan the day after my i/o. What's the groups input on this, does it sound like a valid path to everyone or should I look for a second opinion on any part of it. I did ask him why bep for mature tetermoma, as I had read that it was not responsive to cemo, to which he replied that I was correct, but if it spreads this tells us that it's not put tetermoma and there may be some other microscopeic cancer that the pathology missed.

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          • #20
            Originally posted by Derryquinn View Post
            Thanks for your reply Matt. Oncologist recommends servelance - ct, blood and xray every 4 months for the next 2 years. He said he will give me 3x bep if it relapses but told me that there is only a 15% chance of that happening. On the .8cm node, he is going to do a ct scan on that in 30 days to verify it's not growing, he said if it's growing it's cancer, but he is hopeful that it's nothing as I got my original ct scan the day after my i/o. What's the groups input on this, does it sound like a valid path to everyone or should I look for a second opinion on any part of it. I did ask him why bep for mature tetermoma, as I had read that it was not responsive to cemo, to which he replied that I was correct, but if it spreads this tells us that it's not put tetermoma and there may be some other microscopeic cancer that the pathology missed.
            First off. teratoma is NOT cancer and I would never allow chemo if that were my diagnosis, especially just to "rule out" real TC vs teratoma. Teratoma is normal cells growing in abnormal place, cancer is mutated cell growing anywhere. The surveillance sounds reasonabIe but I would find a new onc right away, yours is too uninformed to be trusted, IMHO.Gettingchemo for pure teratoma is just exposing you to risks that are not appropriate to your diagnosis, again, JMHO.

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

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            • #21
              I'm not sure I'd be quite so vehement as Dave - in a way your onco is right: IF there's spreading, significant growth in 30 days and/or markers go up, then it wasn't just teratoma, and you should probably have chemo. But as he says, that's unlikely. If it is teratoma, and just slowly grows in situ over months-years, then you'll probably need an RPLND. If, as it most likely at this point, it's uninvolved, then you'll be best off with surveillance.

              - T
              30 Jul 14: Discovered lump
              31 Jul 14: GP referral to specialist
              4 Aug 14: Clinical diagnosis of tumour, blood samples taken, CT scans, USS (confirming ~2cm tumour)
              8 Aug 14: Left radical orchidectomy (plus test results back: CT normal, no mets; blood markers slightly elevated: AFP 14.16, HCG 4.9, LDH 149)
              29 Aug 14: Pathology results: Stage 1A Mixed Non-Seminomatous Germ Cell Tumour (composition: Yolk-sac Tumour and Mature Teratoma)

              24 Sep 14: Started precautionary adjuvant 1xBEP
              23 Oct 14: All clear; on surveillance

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              • #22
                Dave and Talis thanks for your input. Hopefully I will never need bep but if I do, I would like to have a relatively high confidence that it's going to work before I start. For eg it would have little or no impact on tetermoma, but on the other hand if the node grows significantly it's probably not tetermoma. Will just have to wait and see. Will post again when I get my next update. Thanks again for all the input, I find it very helpful.
                Last edited by Derryquinn; 11-03-15, 06:40 PM.

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                • #23
                  Just back from doctors appointment and no change to node since last time . Blood markers are also good. Now on servelance for the next 5 years.
                  Last edited by Derryquinn; 12-06-15, 07:38 PM.

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                  • #24
                    I recently had my left testicle removed and was also told that it was a pure teratoma. My scans were clear and I was told no further treatment is necessary. Surveillance for the next few years. It's been a while since Amy's original post and I was wondering if she has an update on her son. Also, wondering if anyone knows anything more about these types of tumors, what they might be linked to etc.

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                    • #25
                      Hmmm, this rather old post has two prior/, pure teratoma cases (AmyC & Derryquinn), without recent updates. The forum software seems confused about both of their "activity" on the site & reports no activity. I'd like to ear how things turned out for both of them.

                      Brian, things soung pretty positive for you right now, hopefully that continues.

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

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