90% chance(in his opinion) that its malignant but bHCG, AFP, and LDH markers will need to get taken to see if anything is elevated" The next 24 hours were a blur. I was a 27 year old dude, about to turn 28. Not in the best shape(overweight), but no major health problems or family history of cancer. I've never smoked, I don't drink. One of the last things on my mind was facing a cancer diagnosis. Frankly, I slept like shit and was a nervous wreck for days, rapidly reading everything I could on potential ways that this whole experience could turn out.After what felt like an eternity, I was able to see the Urologist on 26-Aug-2022. We went through and confirmed my suspicion, that an orchiectomy was in my future and that I would need labs drawn to see if any markers were elevated. On my way home from the appointment, I stopped and had the labs taken:Pre-orchiectomyAFP- measured 17 IU/mL normal 0 - 7 IU/mLbHCG - measured 420 IU/L normal 0 - 3 IU/LLDH - measured 531 u/L normal 118-225 u/LTesticular tumor size - >= 4.8cm, likely non-seminoma but still waiting on pathology report to see if any rete testis invasion or LVI.Given the size and elevated markers, I'm worried that I am more likely to have higher stage disease and that it has already spread, but from what my care team has told me, there isn't a direct correlation between marker levels and it is still possible for me to have stage 1 disease.My surgery was originally scheduled to be almost 3 weeks out from the initial appointment but got a late call on 31-Aug-2022 that said, we have an opening tomorrow morning and are scheduling you ASAP. My orchiectomy was performed the next morning (overall not too bad, the anxiety going into the procedure has been the worst part, the pain and recovery so far are not too bad). Also, shoutout to all of the folks recommending Miralax, I took that first thing when I got home from the hospital following the procedure and the pain of the first poop was really not bad at all. Icing for 15-20mins at a time with acetaminophen has been hugely beneficial and I seem to have avoided a hematoma and never had to take any of the stronger pain meds prescribed although sneezing did have me close once.A question for any survivors, how did you deal with the anxiety/uncertainty between orchiectomy and staging? Rationally I know that there isn't anything I can do at this point but wait, but focusing on other things/trying to get back into my normal routine has been hard since I am still semi couch/chair bound 6 days out from surgery. There is a long wait for CT scans here and the soonest I could get scheduled was for the end of the month, pathology may take a few more days or week before I have that, and my first post-orchiectomy marker draw is tomorrow.I'm a bit freaked out of the possibility of having to go through more treatment because I know that it will be tough, and that is definitely causing me to have some scanxiety since I would assume any masses found/failure of markers to decrease would likely mean RPLND or chemo would be in my future. That and the existential dread of a cancer diagnosis is still there since its been an emotional whirlwind of 3 weeks into this process so far. The silver lining from all of this is that I have found that I have an incredibly strong support network around me and know that whatever comes my way, that I will be able to make it through." title="Post-Orchiectomy Staging Anxiety - Questions for Survivors">full image - Repost: Post-Orchiectomy Staging Anxiety - Questions for Survivors (from Reddit.com, Post-Orchiectomy Staging Anxiety - Questions for Survivors)
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Hey everyone. I've been reading this sub at all hours of the day for the last 3 weeks since this whole crazy journey started. Wanted to share my journey so far (currently a 28 y/o man in the US), and see if others have been through the same type of scanxiety following orchiectomy that I have.On 16-Aug-2022, I noticed something off with lefty at night before bed. It felt firm/hard and swollen like I hadn't noticed before, and I decided to keep an eye on it for the next few days. After nothing changed and not noticing any signs of infection I put in a request for an appointment at my Primary Care, and was able to get in at 9am on 19-Aug-2022. I was booked for an Ultrasound that afternoon at 3:30pm, and at 5pm I got a call with the results notes from the Radiologist that no guy wants to hear: "your images don't look good, there appears to be a large neoplasm of at least 4.8cm replacing most of the left testicle" and was referred to a Urologist for an urgent appointment. I had so many questions and very few answers as to what was going on or what to expect.I happen to have a family friend who is a radiologist and sent over the images that night to have him take a look. The news I got back made my heart sink. "Its a large heterogeneous mass, likely an NSGCT since Seminoma's tend to look more homogenous but they will need to perform an orchiectomy to be sure it's malignant. From the looks of it alone, theres >90% chance(in his opinion) that its malignant but bHCG, AFP, and LDH markers will need to get taken to see if anything is elevated" The next 24 hours were a blur. I was a 27 year old dude, about to turn 28. Not in the best shape(overweight), but no major health problems or family history of cancer. I've never smoked, I don't drink. One of the last things on my mind was facing a cancer diagnosis. Frankly, I slept like shit and was a nervous wreck for days, rapidly reading everything I could on potential ways that this whole experience could turn out.After what felt like an eternity, I was able to see the Urologist on 26-Aug-2022. We went through and confirmed my suspicion, that an orchiectomy was in my future and that I would need labs drawn to see if any markers were elevated. On my way home from the appointment, I stopped and had the labs taken:Pre-orchiectomyAFP- measured 17 IU/mL normal 0 - 7 IU/mLbHCG - measured 420 IU/L normal 0 - 3 IU/LLDH - measured 531 u/L normal 118-225 u/LTesticular tumor size - >= 4.8cm, likely non-seminoma but still waiting on pathology report to see if any rete testis invasion or LVI.Given the size and elevated markers, I'm worried that I am more likely to have higher stage disease and that it has already spread, but from what my care team has told me, there isn't a direct correlation between marker levels and it is still possible for me to have stage 1 disease.My surgery was originally scheduled to be almost 3 weeks out from the initial appointment but got a late call on 31-Aug-2022 that said, we have an opening tomorrow morning and are scheduling you ASAP. My orchiectomy was performed the next morning (overall not too bad, the anxiety going into the procedure has been the worst part, the pain and recovery so far are not too bad). Also, shoutout to all of the folks recommending Miralax, I took that first thing when I got home from the hospital following the procedure and the pain of the first poop was really not bad at all. Icing for 15-20mins at a time with acetaminophen has been hugely beneficial and I seem to have avoided a hematoma and never had to take any of the stronger pain meds prescribed although sneezing did have me close once.A question for any survivors, how did you deal with the anxiety/uncertainty between orchiectomy and staging? Rationally I know that there isn't anything I can do at this point but wait, but focusing on other things/trying to get back into my normal routine has been hard since I am still semi couch/chair bound 6 days out from surgery. There is a long wait for CT scans here and the soonest I could get scheduled was for the end of the month, pathology may take a few more days or week before I have that, and my first post-orchiectomy marker draw is tomorrow.I'm a bit freaked out of the possibility of having to go through more treatment because I know that it will be tough, and that is definitely causing me to have some scanxiety since I would assume any masses found/failure of markers to decrease would likely mean RPLND or chemo would be in my future. That and the existential dread of a cancer diagnosis is still there since its been an emotional whirlwind of 3 weeks into this process so far. The silver lining from all of this is that I have found that I have an incredibly strong support network around me and know that whatever comes my way, that I will be able to make it through.
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