Newly Diagnosed - Feeback wanted

[jmb5026]

Hello Everyone-

I have been skimming these forums for weeks, since my ultrasound confirmed cancer. Seems like a great place for support/information. Below is a quick rundown of my case...

Mid September - Felt slight pain, followed by a small lump on right testicle. Appointment with Urologist scheduled, who then scheduled ultrasound.
10/17 - Ultrasound confirms solid mass, cancer presumed.
10/20 - CT Scan shows no spread, AFP - 2.9 BHCG - 51
10/27 - Right I/O
11/6 - Pathology - Mixed Germ - 90% EC, 10% yolk sac. 4.2 cm at largest.
PT2 because of LVI (Dr. said it wasnt all bad because it did not get to blood vessels, not sure what that means?)
12/8 - will get blood work to see if the leveled off

I guess I am just looking for feedback. My Dr. seems to think surveillance is the route to go if blood work comes back good. He spoke to me about the less is more approach treatment is headed in. I also realize that my chance of relapse could be 40-50%.

Thanks for the feedback in advance!

[JohanusEU]

Hi and welcome,

Without evident spread on CT scan you are still good candidate for surveillance with the chances for relapse as you are mentioning (40-50%). Other possibility is adjuvant chemo (2x BEP). I would be fine with surveillance and ready for 3x BEP as a treatment upon recurrence - which is actually my current situation

Good luck with any decision you choose !

[Talis]

Depending on where you are and who your specialists are, you may also have the option of adjuvant 1xBEP (for which there is an increasing amount of research indicating good efficacy), which is what I went for to substantially reduce the chances of recurrence.

I'd recommend having a look around the research for stage 1 NSGCT treatment options and discuss your options with your oncologist. In my case, surveillance or adjuvant chemo were given to me as options and I decided that the short chemo now rather than potentially long chemo at some later date worked better for me and my circumstances, but for others surveillance to potentially avoid any unnecessary treatment in any case could be preferable.

Either way, your long term prognosis should hopefully be great.

All the best,
- T

[jmb5026]

How did you handle X1 Bep? If that is presented to me, i will have to consider it.

[Talis]

It was ok for me, fortunately. There's a long list of potential side effects, but the only things I really had were initial nausea (kept largely in check with the meds), tiredness (kept in check with lots of sleep), and some temporary taste changes and tinnitus. Oh, and hair loss, but I'm actually quite keen on my new hairstyle. :-)

That said, it's no walk in the park, but I'm glad I only had to do one cycle rather than more (for which I gather the risks of longer-term side-effects also accumulate). And now I feel a little more comfortable about the remaining surveillance (though the worry hasn't really gone away)...

- T

[jmb5026]

Thanks for the feedback... It is comforting to know that people are doing well with stuff i will potentionally be going through. I'm sure you all already know, but the waiting and not knowing can be quite paralyzing mentally at times. Any thoughts on dealing with the times when it is the only thing that you have on your mind?

[Davepet]

Thanks for the feedback... It is comforting to know that people are doing well with stuff i will potentionally be going through. I'm sure you all already know, but the waiting and not knowing can be quite paralyzing mentally at times. Any thoughts on dealing with the times when it is the only thing that you have on your mind?

Just know that you will get through this, as so many of us have before you. While TC may be all you think about right now, in a year or so you will be hard pressed to even think to stop into this forum to say "hello world!"

Dave

[TC Destroyer]

Ha Ha Dave! Well said and very true!

[jmb5026]

Just a little update... My tumor markers returned to normal levels! I meet with my Dr tomorrow to see how to move forward.

[S P]

Great news!

[jmb5026]

Another update....

Went to my urologist to discuss my bloodwork

bhcg - went from 51 to undetectible
AFP - went from 2.9 to 4.4

I initilally thought this was great news, but my urologist is sending me to an oncologist between now and my next ct/bloodwork. The Afp that went up to 4.4 seemed to be his reasoning, because of the 10% yolk sac component. I was under the impression that an AFP at 4.4 was very normal and wouldnt be a cause for concern.

On the other hand i am kind of happy because i feel like i shouldve met with an oncologist from the beginning.

I guess i just feel in limbo again with not knowing what the oncologist is going to say to me. It feel like everytime i have an appointment i leave with a new worry. you could say i am just venting at this point.

ONCE AGAIN... just looking for feedback from a well educated community of people going through the same thing!

[jmb5026]

Anyone? is this AFP from 2.9 - 4.4 cause for concern?

[Mike]

I wouldn't be overly concerned with an AFP increase like this. Her is a recent commentary about AFP from Dr. Einhorn http://jco.ascopubs.org/content/32/1....full.pdf+html

[jmb5026]

Thanks... Judging by the article, it doesn't seem like an increase like that is much to worry about. I'm interested to see what the oncologist thinks.

[Mike]

Definitely see what the oncologist has to say and be sure to keep up with your check ups.