New Dx - Right I/O Completed

[esberger]

Hi everyone, the name's Eric. I'm 27, married, and from Michigan. This is my first post after lurking for the past several days. Here's a brief summary of the past week o' my life:

- 3/30/12 went to ER for pain in right testicle. Ultrasound confirmed solid tumor.
- 4/2/12 first appointment with Urologist. Blood taken at this time with an HCG of 579; LD of 192 and AFP of 268.9. Pelvic/abdominal CT and chest x-ray done on this day as well. Both came back clear.
- 4/5/12 right i/o performed.

At this point I'm just recovering from the i/o and waiting for the pathology results, which I've been told should be in early this next week. I'm not sure what to do at this point, so any advise on the following questions / concerns would be appreciated.

1) Based on the bloodwork I am hoping for an EC Dx as the RPLND surgery scares me more than the chemo. If that ends up being the case, my understanding is that EC can travel through the bloodstream to the brain. I've not yet had any brain type scan (PET scan, or otherwise). Should I be requesting this (if not offered) if the Dx comes back as EC?

2) I've not yet met with an oncologist. Being that a urologist is a surgeon, I imagine that my urologist's response to anything will be surgery (instead of chemo). Any thoughts on when I should expect (or demand) to meet with an oncologist?

3) I need to schedule my post i/o appointment for this next week. Besides finding out the results of the pathology, what should I expect / request at this appointment? Blood work at this point again for tumor markers? CT / X-ray / other diagnostics?

Obviously the above are just a few questions that have occurred to me. If anything else jumps out to you that I should pursue, please let me know. Overall I'm in good spirits although I would have preferred to not join this particular club. With that said, thank you all, you've already been a comforting source of information.

Thank you, Eric.

[Davepet]

1) Slow down, you still have no idea what lies ahead until the results come in . Worryi8ng about the "what ifs" is the worst part of dealing with cancer. It's probably best to try to wait for real info. Yes it is hard to do so, but we've all had to do it.

2) you will meet with an oncologist soon, that is just how these things work. You cannot be forced into any treatment you don't agree to. Probably best to just get as much info as you can about you're particular TC at this point.

3) Path report is the the crucial bit of data you need most right now. You've had a clear CT already, so most likely a stage 1 cancer, but you will need to see your oncologist to confirm that.

Hope that helps,
Dave

[john_ca]

Hey, Eric.

Sounds like you caught it early. You should be happy that the I/O was completed less than one week from when the ultrasound confirmed the mass. I'm in the same situation and it was three weeks from discovery to left I/O (which was completed on Thursday).

At this point all we can do is wait. Focus on healing from the surgery and don't go down the "what if" path. It will only lead to additional stress on your body.

If it's cancer then you will get referred to an oncologist who will discuss options. Until then, just try and relax. I recently picked up a copy of Skyrim and it has helped pass the time =)

Wishing you a speedy recovery and positive results!

[alsawo]

1) No sense in speculating unless you've got the pathology, but hte fact that you had clear CT scans is a great sign that this was caught early and will be easily treatable.

2) You'll want to meet with an oncologist asap after getting your pathology results. Your urologist can probably recommend someone, but also don't be afraid to be proactive and seek out someone on your own. TC is such a rare cancer that there are probably few oncologists in your area that have dealt with it. Try to figure out who has and get an appointment on the books for the next week or so. We also had a consult with a radiation oncologist; you might want to set up the same. You can always reschedule if you pathology results haven't come back yet. I think it's really important to take the reins and get things moving rather than to wait to be told what to do; you are your best advocate.

3) Your urologist will check how your I/O scar is healing, take more blood tests for cancer markers and discuss the pathology results with you if they're back. He/she might have a recommendation regarding further treatment, but remember that he/she is not an oncologist and you should definitely not make any decisions based on the urologist's advice along.

[cbvance]

waiting for the pathology was definitely the worse part for me, I worked myself into such a frantic state with the all the what ifs I eventually asked for anti anxiety medicine (Xanax is a miracle drug for taking the edge).

every ache and pain becomes a possible met site if you start thinking that way.

So far the pathology I got back showed pure Seminoma contained in the testicle without LVI so there is a good chance the IO cured me. I had a CT Thursday and should have the results tomorrow or the next day which of course I am hoping is all clear.

The pathology report along with the surgeons notes are all important though since there are so many types of TC some worse than others all of them however seem to have a rather predictable progression if they do spread making the treatment predictable.

I have put off scheduling an oncologist consult until I have both pathology and Cat Scan in order to confirm final staging, so far its stage 1 and I hope it stays that way.

You have found the right place as I think the entire spectrum of TC types is represented and the folks here are all very supportive and won't pull any punches if they think you are getting less than the best advice from your medical team.

Good luck with your situation, I'm pulling for you!

[esberger]

Thanks for the input everyone. I have my follow-up with the urologist this Thursday. I believe that pathology results should be in at that time. Obviously I've considered a few what-ifs, which I understand can't be certain until pathology. With that being the case, back to work for a few days and then off to the doctor's office on Thursday for some more info!

An interesting fact for everyone, my wife is actually an oncology nurse (pediatric, however). For years I have been hearing about how everything scrape, nick, or discomfort of hers is likely cancer. Looks like I beat her to the punchline however!

Thanks for the support, and my thoughts go out to all of you as well.