I had my orchiectomy over 2 months ago, but I was misdiagnosed 3 months before that with epididymitis and I knew my cancer was there for that long and I had a hard time finding a urologist who would operate right away. When I finally had my operation I was sure my cancer was very advanced and that I was doomed and I was already planning how to leave things here on earth. After a second misdiagnosis where the radiologist reading my CT scan thought I had an enlarged lymph node which 3 other doctors and radiologists didn't see, I was finally diagnosed with stage 1B seminoma. Stage 1 is the best result one can hope for. But the celebration was short lived after realizing that I had some risk factors, 3cm tumor, extensive rete involvement, lymphvascular invasion, and it got into the hilar fat area. My oncologist suggested surveillance with a 80% already cured, I emailed Dr Einhorn who also suggests the same but he says I have a 90% chance of already being cured. I emailed a couple of other doctors my pathology report and I was quoted between 75-85 % already cured from orchiectomy, all suggesting surveillance. While this may seem like good news I was in fact terrified, and I wanted to do some sort of adjuvant treatment because I really wanted to fight this.
I am writing this for help with some insight but also for therapeutic reasons. I have been sleeping very poorly for the past 3 months, average about 4 hours a night. I have nightmares every time I sleep mI'm sure I suffer from some depression, anxiety, panic attacks, hypochondria and possibly bipolar since sometimes I'm in a pretty good mood and sometimes I crash really hard and I'm very depressed and anxious and i feel the world will come to an end. I'm probably at my worst right after I wake up, but it goes up and down throughout the day. I have spoken with a few therapists but there is a big difference between therapists, psychologists, and psychiatrists. I need a doctor who can diagnose me, work out a treatment plan which involves medications and therapy. Problem is that scheduling an appointment with an actual doctor can take up to 3-4 months to see one. I can schedule an appointment with a therapist tomorrow but they are not doctors and at this point they are mostly useless, since they cant diagnose or prescribe medication. I live in the U.S. by the way and the medical system here might be a bit different.
Hypochondria might be one of my biggest issues because I look at all the treatment options as death sentences, all I see is secondary cancers and cardiovascular diseases and strokes and such. I have a DIFFICULT TIME JUST DOING A CT SCAN and I'm really afraid of them and I walked out of my initial CT scan for staging but then I returned and did it, and I also walked out of another CT and I didn't do it at all. I have talked to a doctor who is 7 hours drive away to do MRIs instead of CT scans for my surveillance because my doctor here wont do MRIs. What can I say then when I am faced with chemo and radiation which is 1000 times worse? This is the reason Ive been postponing the carbo treatment, and now after 77 days I have a last chance to do it and I'm having a difficult time again with making this decision. I know whichever decision I make I will still be equally distressed, so my mental state doesn't matter in my decision, what should matter is what will give me the best outcome, however I just cant get myself to go through with it.
Important note here is that for the past 3 months I have been constantly reading medical journals, academic articles and trials, like the Spanish and SWENOTECA trials, and everything I could find online pretening to relapse rates and treatments for stage one seminoma. I read about proton radiation therapy, and the limited amount of trials done with that technology. I have read about long term effects and risks of chemo and radiation. This is basically ALL that I have done in the past 3 months, read and read. I even paid money to get access to articles.
The problem with reading all this is that I know so much about it that I sometimes disagree with my doctor. Like for example my doctor wants to give me a dose of carboplatin after 11 weeks from the orchiecomy but I have read that after 60 days the relapse rates are higher, and I will be at 77 days. She said that it is effective up to 3 months but that's not very comforting considering that carboplatin only has a modest effect to begin with (according to medical journals). My doctor quoted me 95% cure rate with one shot of carbo but I read that its closer to 91% especially with my risk factors. Throwing in on top of that 77 days out which again lowers my chances by who knows how much, I won't be too far from the ~80% I have already been quoted for surveillance. I have read that I should have my cancer re-staged since the long wait but I haven't done that because I walked out of the CT scan due to panic attack, and if i do it now it will push my treatment back even longer.
I also spoke with a radiology oncologist who said that RT treatment should be done between 4-8 weeks after orchiectomy but the earliest time he could do it was AFTER 3 months from my surgery because of how busy it is. He also said that "HE FELT COMFORTABLE DOING IT AFTER MORE THAN 3 MONTHS". Is this common practice or should I be worried?
I'm having a hard time justifying the carboplain treatment. I have read too much about it, and I know that it comes with risk factors however mild, like secondary cancers, infertility, and its detected in the blood for 20 years. There is 80% chance I don't need it at all and it will only be modestly effective if I do need it. But at the same time I want to do something to fight this. I just don't know what.
Anyway that's my story. If you read it all thank you for doing so and I hope you have a nice day and God bless.
