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New here, hoping someone can help me feel a little more informed.

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  • New here, hoping someone can help me feel a little more informed.

    Hey folks,

    I'm 27 next month, active duty Navy, with a wife and 8 month old son. On March 4, I went to an urgent care for an inflamed epididymis that was becoming uncomfortable when I laid down. I was given antibiotics and went on my way. After finishing the course of antibiotics, my inflammation was worse. I was urged to get an ultrasound and did so on March 12. A 1.7cm mass was found and I was scheduled for surgery on the 19th. Blood tests revealed that all levels were normal except for the alpha-feto protein. On the 13th, the AFP was 170.5 and on the 19th it was 225. CT scan and chest X-ray were normal. After my Left I/O, the biopsy showed that my mass was 80% embryonal cell and 20% teratoma. Both malignant. There was fortunately no invasion in the spermatic cord, epididymis, etc. It seems contained in the testicle from what they could see. Doctor says maybe I'm cured, maybe I'm not, and that he recommends an RPLND. I feel like I should get the RPLND. Just an intuition feeling. My wife is scared of the surgery and is on the fence about surveillance, but she knows it is ultimately my decision. We don't have the post op blood marker results yet. I'm just hoping for some advice or reassurance.

    Edit: I had read that RPLND can affect fertility. Anyone here go on to have kids afterwards?
    Last edited by WarshBucket; 03-28-15, 11:59 AM.

  • #2
    Sorry to have to welcome you to this club. It sounds like you've been doing all the right things so far. The choice for Stage 1 treatment at this point is debatable. Your options are usually: surveillance (though you really do have to stick to the regime, which might be difficult in your circumstances), adjuvant chemo (1x or 2xBEP to reduce recurrence risk to negligible levels), or RPLND (to investigate whether there's active cancer - though if it turns out that there is, you'll probably need chemo anyway, and a number of studies have shown that there's still a moderate risk of recurrence even if the RPLND is negative).

    In pretty much every case the long term survival rates are fantastic; there's no clear consensus as to the best choice and it's really down to you as to which option you feel best meets your life circumstances and risk tolerance. I personally chose chemo and was happy with my choice, but others would recommend surveillance. RPLND (esp. open RPLND) is really quite invasive with risks of complications (e.g. hernias) and a fairly long recovery period. If you go down that route, I'd recommend going to an RPLND centre of excellence - the experience of the surgeon is paramount.

    Hope this helps, and best wishes.
    - 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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    • #3
      I don't know if you got a chance to read the information I sent you in a message. Someone with the same pathology and staging posted in a Facebook group and they were thinking of doing the RPLND. Dr. Craig Nichols commented on the post that RPLND is not the recommended treatment. I'll see if I can cut and paste what he said. "Well, with 100% embryonal, I would definitely not do surgery. primary RPLND in any setting only reduces by half the number of patients ultimately needing chemotherapy and it is even less with embryonal predominant disease. Ask whoever is proposing surgery how many of these he/she does a year. There are now data that strongly suggest that any RPLND should be done by a surgeon who does 15 or more year. I guarantee that no one in Idaho does this number and the fact that they are proposing and apparently pushing this surgery suggests to me that a second opinion would be valuable. It is not a matter of cutting the head off the snake because in this setting it is equally likely that the head is beyond the area of proposed surgery and that you will undergo the surgery without any benefit. It is also not a matter of cure. Everyone in your setting should be ultimately cured. We just published at paper combining more than a 1000 patients none of whom had primary surgery and the long term cure rate was 99.7%". The person he was speaking with has 100% embryonal where you have 80%. Seems the same rule would apply though. Ultimately it is up to you. He is a world renowned expert though and was Lance Armstrong's primary oncologist. The wonderful thing about both he and his mentor, Dr. Einhorn, is that they will not only consult with your doctors but they will also answer you emails.

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      • #4
        Personally, I would do surveillance. RPLND was the standard of care for every TC patient 40 years ago when I had mine, but seems to be falling out of favor with the success of chemo regimens these days. With a high percentage of EC, which can bypass the lymph nodes completely & show up in the lungs, I would not go with surgery. If you feel the surveillance is going to be difficult for you, then consider one of the chemo lite treatments, but I would personally not do that unless I had a confirmed case of TC spread.Your odds of being cured already are actually pretty good at this poimt, & if you are not the chemo is still available & will likey cure you down the road when it is obvious you need to go there.

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

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        • #5
          Thank you all so much for replying. The reason that RPLND was recommended to me is that teratoma does not respond at all to chemotherapy even though embryonal cell does. The surgeon at Oklahoma University has nerve sparing RPLND on his resume, but I haven't met with him yet. I'm scheduling the appointment on Monday. Fortunately, I'm stationed in a landlocked state, so any treatment is on the table. But yes, it's the teratoma that throws the wrench into the surveillance/chemotherapy approach.

          Comment


          • #6
            True, teratoma does not respond to chemo. That is because it is technically not cancer, it is entirely normal cells growing someplace they shouldn't be growing. Your path report should have stated either mature or immature teratoma. Immature teratoma can sometimes spread to other areas, mature teratoma rarely does.

            In any evemt, with a clear CT scan, you would be safe on surveillance, since any growth will show up in plenty of time to treat whatever it is at the point you know you actually need treatment.Personally, I would avoid a major surgery unless there was evidence it was necessary. It is, of course, your decision to make, & you need to be comfortable with that decision.

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

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            • #7
              That is along the lines of my wife's thinking. The biopsy said that the teratoma was malignant, so I assume it is immature. This is the biopsy report.

              Comment


              • #8
                My advice - don't trust a negative CT scan - the scan only shows growths larger than 1cm, so it may not give you the whole picture. I was diagnosed a few months ago with a similar pathology (70% embyonal, 30% teratoma), and after the IO I had a negative CT scan, but I decided to go ahead with a laparoscopic RPLND, and cancer was found in 8 of the lymph nodes they removed. Now I'm getting ready to start adjuvant chemotherapy.

                Whether you choose surgery or chemo, act fast! I wish I had gotten the RPLND sooner, or just went ahead to chemo right away. It was scary to find out that cancer had been in me for the whole month I spent procrastinating and debating my decision, assuming it was all just preventative and not urgent because of my negative CT scan.

                Comment


                • #9
                  Originally posted by nnqq View Post
                  My advice - don't trust a negative CT scan - the scan only shows growths larger than 1cm, so it may not give you the whole picture. I was diagnosed a few months ago with a similar pathology (70% embyonal, 30% teratoma), and after the IO I had a negative CT scan, but I decided to go ahead with a laparoscopic RPLND, and cancer was found in 8 of the lymph nodes they removed. Now I'm getting ready to start adjuvant chemotherapy.

                  Whether you choose surgery or chemo, act fast! I wish I had gotten the RPLND sooner, or just went ahead to chemo right away. It was scary to find out that cancer had been in me for the whole month I spent procrastinating and debating my decision, assuming it was all just preventative and not urgent because of my negative CT scan.
                  Hey, thanks for replying. Did they find invasion in your epididymus/spermatic cord, etc, during the biopsy? Did your AFP markers go down as expected?

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