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.
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.
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