I joined this group 18 months ago when I was diagnosed with Prostate Cancer and this group has been amazing with providing advice and support in my Cancer journey. Now this - Cancer sucks.
My son came to me last Monday and said something didn't feel right down there. Made appt with Family doctor for Tuesday. Did an ultrasound and things looks suspicious. Made an appt with urologist for Wednesday, did blood work and said 99.9% sure testicular cancer. Scheduled surgery on Friday and waiting on pathology. What a week. He is 5'11", weighs 170 lbs and works out everyday.
Blood work came back - AFP 697.9, hCG-B 1307.4, and LDH was normal at 189. Based on those numbers - thinking non-seminoma testicular cancer. But I am new to this.
Yesterday - he went back to Baylor (10 hours away) for his last semester of college. After the pathology comes back Wednesday - it will confirm he has cancer and he needs to get a CT scan done somewhere and we need to figure out where the best place to go for Testicular Cancer treatment. MD Anderson was recommended by the Urologist that did the surgery.
Any help or advice here would be appreciated. Things have been moving so fast - just want to help him make the best decisions he can.
Written by
Hannity
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Sorry for the delay and to hear about your son's situation. Has the pathology come back yet? With the elevated AFP, I would suspect a nonseminoma given that seminomas do not have elevated AFP levels greater than around 25. Has he been scheduled or received results from the CT sans? At this time the CT will probably be the biggest piece of information on determining the next steps.
Pathology came back last Thursday showing nonseminoma with 60% Embryonic, 35% yolk sac and 5% Choriocarcinoma. Working on getting into MD Anderson in Houston but it is taking time. MD has requested the slides to do their own pathology on the tissue and that pathology will determine what appointments and tests (CT scans of Brain, Lungs, abdomen, blood work etc…..) will be scheduled on his initial visit but to plan on 3-5 days in Houston. I have learned that Testicular Cancer is very different than Prostate cancer in that TC is very aggressive and timely action is critical as it readily spreads, but it is also 95% curable. We have joined a very active Facebook group “Testicular Cancer Support and Awareness “ that has been very beneficial.
Thanks for your reply. This group has been great for me in regards to staying informed and supported in my Prostate Cancer journey.
Indeed, testicular cancer is quite a bit different than prostate cancer. The CT scans at this point should really drive treatment options. I had my CT scans done before the testicle was removed, which was nice as I knew there hadn't been any spread or need for great urgency. However, it is also common to do the scans post-operatively after the pathology confirms that it is a cancer. If I was in Texas, MD Anderson would be one of the places I would go for further evaluation and pathology review is common with the referrals. I'm not sure how far he is from Houston, but 3-5 days to be evaluated there seems a bit long. If it were me, I would push for imaging and my appointment to be done more quickly, just to avoid time off of work and hotel costs, if he is staying there.
Thanks for your advice Mike. We tried to get the CT scans done prior to surgery but insurance wouldn't approve until it was confirmed he had cancer. Now we are just waiting for MD Anderson to set up the needed tests and appointments. We are praying that CT scans show no spread and Blood work shows tumor markers dropping by appropriate 1/2 lives. With the type of cancer showing on the pathology - even if CT and Blood work looks good - my research shows he has a 50% chance of recurrence with no chemo. 20% chance with 1 round of chemo (BEP) and a 4% chance if he does 3 rounds of chemo (BEP). It may be curable - but the road to get there may be a rough one. We will take the advice of the doctors - but I want to be educated enough to ask the right questions. Thanks again.
Some insurance companies do tend to wait until after pathology is confirmed before they will pay for a CT and then when there are borderline nodes due to surgical changes, they probably wonder why the CT needs repeating, but that is an argument for another day.
For noseminoma, lymphovascular invasion is the most commonly recognized predicting factor for relapse in stage I disease. If LVI positive then it is estimated at a 50% chance of relapse and if LVI negative then more like a 20% chance of relapse. Adjuvant therapy with BEPx1 does appear to reduce those odds to <5%. I have not heard of anyone considering BEPx3 rounds for stage I disease being anything more that way over-treatment as this is the regimen for good prognosis advanced disease (i.e. Stage II or III and not stage I).
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