New and SUPER NERVOUS...Questions...

[djairmoses]

Hey guys, I am new to the board and a little nervous about EVERYTHING...well, let give you the run down:

I was playing golf with my roommate in early July when I pull what I thought was a groin muscle walking up a hill. Well, after about a week my left testicle what just getting worse (twice the size of the other one and throbbing like hell). My Family doctor couldn’t find anything and said it was some sort of infection (epidermisidus (sp)) and put me on anti-biotic. Well after about a month of going in and out of the doctor (He was baffled because there was no sign of being cancer, no Lump, no ruff areas), I got my ultra-sound on Aug 14th, “just to make sure”. Well, that when the ball started to roll (My sick friend thought of that one...I need the humor) On the 16th my doctor referred me to my urologist for the 18th because the report was not good. Me and the girlfriend went on that Friday and said it does not look good and the left buddy is going to be taken out, that along with Chest x-rays and blood work. WOW…and o my G! I was so surprised and super scared. August 22, 2006 was the day. I was in at 6am and out by 1pm (Which really surprised me, but I found out later that it’s normal and I had one of the best doctors in Colorado). Well, setting on my butt for about 4 days (with great pain killers) with a BEAUTIFUL woman helping me, I found out on 25th that it was Stage I pure Seminomatous Cancer/60% of the testicle/no vascular invasion. My doc was SUPER relived and the one thing he said I still hang on still to this day, “You will not die from this”. On Sept 1, I got a CAT scan done and more blood work. He said I can be surveillanced or have RT done (he did STRONGLY recommend radiation for the cancer was larger 3cm (Or something like that)). I said without hesitation RT because LETS GET THIS THING DONE AND KICK IT. I wanted to forget and move on (if one can, the more I dwell, the more I FEEL HORRIBLE/depressed). But I think God wanted me to be MORE aware of this. More on this later. More good news with negative on the x-ray and CAT. ‘Thank God’ I kept saying so I met with the radiologist and I got my first radiation treatment set for Oct 16, Day before my birthday. Good...but...about that MORE thing god wanted me to worry about. My blood work has come in and all my tumor makers have fallen except AFP (before surgery-7.5, after on the Sept 1-7.3, I think normal is between 0-6.1). He said to get that blood work done on this on the 8th. So it’s done and ALL I been worried about is if this is BAD or what have you. What I found out in the big picture is that it is associated with the liver and associated with NON-Seminomatous cancers. WHAT, but I thought I had Seminomatous Cancer. Well, I got the results back today and it showed 6.8. The doctor seemed concerned but not nervous (more like not bad news nor good news type of thing). So I will be going in on Friday the 15th for more blood work (I HATE NEEDLES…ha ha). If it doesn’t go down he said I am going to an oncologist.

So I am done with the back story and now the crazy nervous emotions part I like to ask all of you:

-Are those AFP tumor makers numbers bad??
-Should I get really be concern?
-Does that mean Chemo for a Pure Seminomatous Cancer?
-Does that mean something else?

-And how can I stop being nervous about ALL of this?

Oh..

-And how bad was my grammar? No..I know have horrible grammar... sorry.

Thanks for any to all help...

Joey

[Karen]

Welcome Joey! Glad you got the surgery over with....the first step to a cure. I strongly suggest that with eleveted AFP you have your slides sent to an expert path lab (Indiana, Sloan) to get a second read. AFP is NEVER elevated in pure seminoma. Even a small percent of non-seminoma and you will be treated with a non-seminoma protocol as radiation will not be fully effective. Look at Andy's thread for a similar situation.

Post you labs for all markers, chest x-ray, CT scan and final pathology report, if you would. Bottom line is TC if highly cureable and it sounds like you caught it early with no vascular invasion. You will be fine!!!

An excellent place to start to learn about all this is http://tcrc.acor.org. The more you knw the better you can communicate with the docs and ask questions. Get copies of all your reports and digest the info at your own pace. Call the doc if you don't understand something.

It's a lot to take in, and is very frightening, but you found a good place for support and advice.

[Scott]

Your AFP result isn't high enough to be sure it's caused by cancer. You may want to consider surveillance, with chemotherapy held in reserve as your safety net in case of a confirmed recurrence.

Don't worry about being anxious. You're a cancer survivor, and a little anxiety goes with the territory.

Stick around, post more information as you get it, and ask lots of questions.

[Karen]

More on AFP...you may be one with naturally higher levels. I still think it wouldn't hurt for a second look at the path by an expert lab...just to be sure.

Alpha-fetoprotein - AFP is a protein found in the bloodstream of some men with nonseminomatous testicular cancer (It is NEVER present in seminoma patients). The level rises when the cancer is growing and falls when the cancer is shrinking or has been surgically removed, so a blood test can possibly measure the progress of the disease and success of treatment. ....Please note that AFP is normally less than about 5 ng/ml, but cancer cannot be assumed until it is over 25 ng/ml. Also note that a very small number of people have a naturally high level of this protein in their blood (though less than 25) even though they do not have cancer.

[djairmoses]

Hi-fives for all of you...

Scott & Karen,

Thanks for your replies. This helps me. I mean I have to say that my girlfriend tries so hard to help me and talk about what I am going through but it’s so nice to hear info and inspiration from people who have been through it. It really made my day in a lot of ways. So thank you both.

My AFP are about 0.7 over the normal and I heard (and read) that Non-Seminomatous levels are quite higher. Is that true? and my mom has a high AFP with her too, could that be related??

And Karen, per your suggestion, I requested a copy of all my reports so far and still waiting word from the nurse. Last time I talk to the Doc, he chuckled a little stating, “You have been studying up”. I have never been a book smart type of guy...Ha...that why I design...the worst case scenario is that my Dr. here said if its still high, he will suggest a very good oncologist here in Colorado. He will check over everything else see if it’s not something else wrong with my liver, or hepatious c or something else...which I would have NO IDEA how I would have got any of those two if I have…my doctor said it would be VERY rare it I got that cancer somewhere else in my but its not something to rule out.

So the blood work is again tomorrow morning (with this nice woman named Irma, I remember because my grandma had the same name, I hugged her last time because she drew blood better then the last 3 times before with so other woman...blah. Haha). I would find out sometime probably weds of next week at the latest...I’ll keep you updated...

Is this main thread a good place to talk about worries and concerns in my stage of cancer right now?

One more thing, should I be concern about my diet right now too??

Ok...Thank you guys and any others that might be able to help!!!

Joey