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New guy here, recently diagnosed. A little overwhelmed/freaked out

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  • New guy here, recently diagnosed. A little overwhelmed/freaked out

    Hi everyone, glad to find this forum. Definitely didn't expect to find myself here, but then again who does, right? I'm 32 and was recently diagnosed with non seminoma stage IIa. I had a sudden swelling in my left side after my 3 year old daughter kneed me accidentally while wrestling around and the swelling didn't go down after several weeks. I'm located near the University of Missouri, and the University hospital has just completed a new cancer center that is a part of the MD Anderson Cancer Network. Not really sure how big of a deal that is, but they seem proud of it. All ultrasounds and MRIs pointed to hematoma however urologist ran tumor markers that all came back elevated. I went in for orchiectomy a few days before Christmas. Pathology reported a mixed germ cell tumor (65% EC, 5% choricarcinoma, 10% teratoma, 15% seminoma, 5% yolk sac, spermatic cord uninvolved). CT and blood work done 2 weeks out from surgery, results showed one lymph node enlarged at 1.5cm, bHCG slightly high at 8 and AFP also elevated at 19.

    Met with Oncologist and Urologist to discuss results. Oncologist recommended, per NCCN guidelines, to wait 4-6 weeks and do another CT and blood test to confirm staging before proceeding. I guess because there's a slight (but not likely) chance the node swelling could be reactive and the levels of AFP and bHCG had not yet returned to normal after surgery (something about half lives being longer than 2 weeks for AFP especially). When discussing what treatment would look like if no changes on follow up scans next month, oncologist said he would recommend 3xBEP.

    I'm quite concerned about the late effects and long term issues that could come from BEP or any chemo down the line. Though my wife did point me to a study showing that testicular cancer survivors statistically only live 2 years less than men who have never had cancer, and that number approaches zero if you're 32 like me or older, so that was something I guess (looking for hope where I can get it). I asked my urologist about RPLND (does this acronym make anyone else think of an automatic transmission: PRND?). Urologist said he would not recommend RPLND unless absolutely necessary and that he personally would opt for chemo if he was in my situation. Oncologist seconded this, stating they would only want to do RPLND if the lymph node was unchanged and/or continued to grow after the 3xBEP. I believe the NCCN guideline post chemo would be to observe if the node is less than 3 cm, so I'd basically be in observation even if it didn't change, as I understand it. But please correct me if I'm wrong.

    I don't even really know what I'm asking here anymore, but a few things I'm hung up on. 1. Late effects of chemo/chemo making us more likely to develop other health conditions later...I'm just having a hard time voluntarily signing myself up for something like that, but certainly recognize the importance of killing cancer cells in my body. 2. If I opted for RPLND straight away, it's my understanding that some amount of chemo would still be recommended because EC can bypass the lymph nodes, but I'm unsure what that would look like. Since I had some teratoma in there, I guess there's a chance I might end up needing RPLND either way, and if that's the case, I'd rather do it before chemo than after, when my guts get all sticky. 3. I've always been a little weirded out by the radiation from CT scans, my father works at a nuclear power plant and has always talked about how dangerous that stuff is to be around. Seems like I'm going to be bombarded with it in the very near future, and I'm having a hard time coping with that as well.

    I think I'm just struggling to accept all of these things and how they'll be affecting my body. I've always stayed in shape, don't drink or smoke, and am the kind of person who wouldn't even really take tylenol unless something really major happened, so this is just a big leap for me to be thinking about radiating and pumping my body full of chemicals.

    Anyway, sorry for the long first post, but just wanted to introduce myself and my story. Thanks for any support or insight you can provide.

  • #2
    Hey BAMxi, sorry to welcome you to the club!!

    Yes, it's tough to come to terms with it, it's just crazy and overwhelming...

    But the after effects from chemo in most cases are fine.

    They keep a pretty good handle on the lungs with lung function tests, are most of the others go away.

    Nearly 2 years out from BEPx3, I feel as good as I've ever been, if not better - so hopefully, you can get through it in good shape!
    July 2016 - Left I/O
    December 2016 - BEPx3
    All clear for 2 years now!

    My Testicular Cancer Support Kit
    First Oncologist Visit Checklist
    3 Things I Wish I Knew Before I Started Chemo
    3 Reasons Why People Disappear From Your Life During Cancer
    Simplify Cancer Podcast

    Comment


    • #3
      Here's what the Testicular Cancer Resource Center dictionary (http://thetcrc.org/dictionary.html) has to say about AFP:
      Alpha-fetoprotein - AFP is a protein found in the bloodstream of some men with nonseminomatous testicular cancer (It is NEVER present in seminoma patients). The level rises when the cancer is growing and falls when the cancer is shrinking or has been surgically removed, so a blood test can possibly measure the progress of the disease and success of treatment. Because of this behavior, it is referred to as a tumor marker. Elevated levels of AFP occur in 75 per cent of patients with teratocarcinoma, embryonal cell carcinoma, and yolk sac carcinoma. (However, increased levels of AFP are also found in patients with liver diseases, such as cirrhosis, acute and chronic hepatitis and hepatic necrosis. ) The serum half life of AFP is 5 to 7 days, which implies that elevated levels of AFP should fall by one half of the initial level per week and should probably return to normal within 25 to 35 days after surgery if all of the tumor has been removed. The higher the level, though, the longer it will take to return to normal. Please note that AFP is normally less than about 5 ng/ml, but cancer cannot be assumed until it is over 25 ng/ml. Also note that a very small number of people have a naturally high level of this protein in their blood (though less than 25) even though they do not have cancer.
      So it should drop by half every week once the cancer is gone.

      hcg should drop very quickly:

      Human Chorionic Gonadotropin (hCG), beta subunit - In adults, significant elevation of levels of beta HCG occurs only during pregnancy and in patients with trophoblastic neoplasms or nonseminomatous germ cell tumors. As a result, it is used as a tumor marker. Essentially, 100 per cent of patients with trophoblastic tumors and 40-60 per cent of patients with nonseminomatous germ cell tumors, including all patients with choriocarcinoma, 80% of patients with embryonal carcinoma, and 10-25% of patients with pure seminoma are diagnosed with elevated levels of beta HCG. The serum half life of beta hCG is 24 to 36 hours, which implies that elevated concentrations should return to normal within 5 to 7.5 days after surgery if all tumor is removed. Please note that the normal HCG level is usually less than 5 miu/ml. Also note that the HCG level can become elevated (falsely positive) due to abnormally low levels of testosterone or because of marijuana use.
      The dose of radiation from a ct scan is about what you get just living on planet earth for a year. Might sound like a lot, but not really, in any event, its not really optional if you want to beat cancer. It's the best way to catch any relapse early.

      I know long term effects of chemo are worrisome, but again if you need to kill cancer that is the best way (some might argue surgery is better, I don't think so & I've had both). There are lots of us here that have had chemo & came out on top of TC. You will too.

      Dave
      Last edited by Davepet; 01-08-19, 10:12 PM.
      Jan, 1975: Right I/O, followed by RPLND
      Dec, 2009: Left I/O, followed by 3xBEP

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      • #4
        So sorry. The waiting period is tough. I think too many are scared by RPLND. My son had both chemo & post chemo RPLND at age 17 and he still says chemo & side effects are worse than post RPLND.
        That being said you will have to see what your markers do in the enxr 4 weeks. I assume they will also order another CT Scan? Any rise in your markers will probably indicate the need for chemo. I would go ahead and reach out to a TC Expert to double check before starting treatment. MD Anderson satellites do not necessarily have TC Experts (either Urologists or Oncologists), Dr. Lawrence Einhorn is the Oncologist who changed the face of TC back in the 1970s. He is kind enough to respond by email if you are interested. leinhorn@iu.edu
        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.

        Comment


        • #5
          Thanks for the replies everyone. I'm feeling a little better about everything today. I did some more reading last night and overall I'm glad there are options out there and a good amount of research to consider. I honestly think I'm less scared of RPLND than I am of chemo. My doctors brushed off RPLND as not even being an option unless the node does not shrink with chemo. I'm just trying to understand now whether RPLND would result in less or no chemo if I did that first. As I may very well consider that option if so.

          Comment


          • #6
            I was in a similar situation as you were in, with very similar thoughts. I too tried to live a healthy life leading up to it, and I was a very active, athletic kind of guy. I would balk at the thought of taking even Tylenol for a cold :P

            The RPLND seems like a walk in the park compared to chemo, so why wouldn't I do that first? The problem with doing an RPLND is that it's not a systemic cure, so it may not actually help you all that much if the cancer has spread beyond those nodes. All it takes is just a little to go somewhere else for the RPLND to be insufficient. Chemo on the other hand, goes everywhere. If your tumor is hiding in the corner of your body, it'll get to it.

            The other issue with doing an RPLND first is that that has it's own recovery time, in the order of months. If you discover you still need chemo after that, you need your body to be in as good a shape as possible to weather the chemo journey.

            If you do go down the RPLND route *AND* your markers are still low after that indicating surveillance or adjuvant therapy is an option, I'd recommend against adjuvant, single/dual cycle of chemo. Either you go all in with chemo, or none. Going half-in can result in a partial cure and potential resistance to the chemo, in which case, you'll have to up the ante to HDCT if it indeed comes back later.

            I was a stage 2A as well, went through 3x BEP. Yes, it was rough at times. 6 months out from it though, I feel as good as I did before chemo. I'm playing sports again, eating normally, skin looks great, feeling great. So while chemo is rough, there is a light at the end of that tunnel!
            2018:
            1/10 - Felt mass in right testicle.
            1/11 - LDH: 287 (max = 246), AFP: 16, HCG: 87
            1/18 - Orcheictomy. Non-sem, 80% EC, 15% Teratoma, 5% Yolk. LVI present. pT2, Tentative stage 1B.
            1/29 - Chest CT, Brain MRI, all clear
            2/19: HCG = 5.6, AFP = 13, LDH = 187 (ref = 340)
            2/20: Abdomen CT, 3 large lymph nodes, 0.8, 1.0 and 1.3. Stage 2A
            2/22: 3x BEP start
            2/22 - 4/26:
            AFP: 13, {11, 9, 5}, {4, 4, 3}, {3, 2, 2}
            HCG: 5.6, {2.7, <0.6, <0.6}, {<0.6, <0.6, <0.6}, {<0.6, <0.6, <0.6}
            LDH: 187, {208, 149, 196}, {215, 197, 222}, {277, 270, 240}
            5/3: CT scan, all clear. Lymph nodes <1cm (largest 0.8cm)
            7/5: Repeat MRI, lymph nodes unchanged. Markers still normal
            9/1: Repeat MRI, unchanged

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            • #7
              I had both 3 x BEP and a rplnd and I have recovered well I was diagnosed in May and had
              My rplnd in September for 100 ec stage 2b. I’m already back to pretty much normal just have a nasty scar that I would gladly have for peice of mind. I was also a very healthy active 34 year old le officer once diagnosed. I can also say that for me I would do surgery any day over the chemo. After my rplnd I was up walking worhin 24 hrs and out of the hospital in 3 days. Also if I can remember correctly after chemo anything over 1cm they usually recommend rplnd for ec.

              Comment


              • #8
                I had both 3 x BEP and a rplnd and I have recovered well I was diagnosed in May and had My rplnd in September for 100 ec stage 2b. I’m already back to pretty much normal just have a nasty scar that I would gladly have for peice of mind. I was also a very healthy active 34 year old le officer once diagnosed. I can also say that for me I would do surgery any day over the chemo. After my rplnd I was up walking worhin 24 hrs and out of the hospital in 3 days. Also if I can remember correctly after chemo anything over 1cm they usually recommend rplnd for ec.

                Comment

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