Classic Seminoma with elevated AFP

[Rob2time]

Hello Everyone,

I'm new to the forum. I think this is terrific.

My current situation is as follows. I had TC (Seminoma) in 1973 and had my left testicle removed followed by radiation therapy. 33 years later I had a recurrence, and on September 12, 2006 had my right testicle removed. The pathology came back, again, Seminoma. However my blood tests before the operation showed an elevated AFP of 16.2 which isn't usually associated with Seminoma. All CT scans, other markers, and lung x-ray, were clean. At my follow-up last week the AFP was only slightly reduced to 15.2.

My doctor's opinion is that if there isn't a big reduction in 4 weeks (my next visit) he recommends another operation to remove more lymph glands.

Has anyone else had a Seminoma with elevated AFP? If so, did you have follow-up surgury? Does anyone know of any situations where AFP can be elevated and it not be cancer?

Thanks in advance,

Rob

[Scott]

Welcome to the forums, Rob, and hearty congratulations on 33 years of survivorship!

Note that, strictly speaking, you had a second cancer rather than a recurrence.

It could be that your AFP is elevated from non-seminoma. However, it's not high enough to be sure.

From the Testicular Cancer Resource Center:

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.

Also, at this link is a list of things that can cause a false positive AFP.

[dadmo]

Rob:
Do you have any idae what your AFP was when you had your first cancer? Have you changed anything with your diet, do you have any new tattoo's or piercings, surprisingly that can cause a temporary change.
I think West Chester should start a tc-forum chapter. You're the third member from there. I thought we in NJ had a lot of members.

[Rob2time]

Rob:
Do you have any idae what your AFP was when you had your first cancer? Have you changed anything with your diet, do you have any new tattoo's or piercings, surprisingly that can cause a temporary change.
I think West Chester should start a tc-forum chapter. You're the third member from there. I though we in NJ had a lot of members.

dadmo,

I haven't a clue, in those days you didn't get to see the labs. I'm going to try to get the records, but after 33 years, I think it is a long shot.

I don't have any piercings or tatoo's (except the old radiation field marks!). However, as the result of some sports injuries I have been taking > 600mg of Motrin every day for about 4 years. Based on the reply by Scott, I am investigating that possibility.

Thanks,

ROB

[IowaBrian]

I bet even if you found the labs it could apples to oranges since the testing is much better today then 33 years ago.
You said sports injury If you are taking any sports shakes pills or stacking anything I believe that can cause a problem not saying that you are doing that just saying.
It might be that it was a mixed cell might be worth asking that slides go out for a 2nd opinion, wouldn't be the first time Path screwed up looking at something.
Good Luck
Brian

[Rob2time]

Thanks for the reply. I'm contacting a hematologist (SP?) regarding the Motrin, which I took to reduce the pain from a bike accident. I have now officially stopped that. Other than the T-patch I now sport, I take Synthroid and Dr Tabb vitamins. I am going to get both reviewed as well, you never know.

I agree it could have been a mixed tumor, however, I don't understand why the AFP wouldn't go down more after removal. Regardless I'm getting the slides reviewed by another group.

Thanks again,

Rob

[dadmo]

Rob:
I have to look thru the old post but within the past 6 months someone had elevated AFP and the forum asked about protein drinks and sure enough he was taking one. When he stopped his AFP returned to normal. He still takes the protein (which is fine) but stops 10-14 days before a check up.

[Scott]

I have to look thru the old post but within the past 6 months someone had elevated AFP and the forum asked about protein drinks and sure enough he was taking one.

I think this is the thread.

[Fish]

Hi Rob:

It definitely sucks to get TC a second time. I had about 15 years between my cases.

A lot of things can elevate AFP as per Scott's link. Your levels are not all that high and unless they start shooting upward, I would be hesitant to allow anyone to go in and pull lymph nodes. A second opinion on the pathology is a great idea. You might also want to run your case history by one of the experts at Sloan or Indiana.

Best wishes.

[Rob2time]

Well, my gameplan is to find out as much as I can on my own, get 2-3 opinions and then make a decision. I've come too far since 73 to make any decisions based on emotion or blind trust. I certainly don't want an unnecessary operation, but I am unafraid of a necessary one. I'll make some adjustments in my medicines, and see what happens. But if the AFP should go up I'll pull the trigger on some kind of treatment.

I called my Pharmacy, and confirmed that the AFP numbers are definitely affected by my level of Motrin intake. Apparently it does cause false positives as do many other drugs and supplements. The real question is how much, as it also varies by individual. I find it strange that doctors and/or Labs don't mention this when you get the lab work. It seems like a pretty critical piece of information, on a test result that might cause a bad decision!

Regardless, I'm now off everything but the T-Patch and the Synthroid until after the next test, which is 3 weeks away.

Most importantly, I feel GREAT, better than I have felt in a year!

[indiana9]

Hi Rob:
I was diagnosed with seminoma at the age of 49 with initial blood tests showing both AFP and HCG at 24. A second pathologist at IU took further "slices" of the removed testicle and agreed with the pure seminoma diagnosis. My elevation was not due to protein drinks or any supplements. Dr. Williams at IU said that sometimes AFP will elevate slightly with seminoma and that they (IU) do not consider the AFP truly elevated until it reaches 25 or higher.
Best wishes.
Brian

[Rob2time]

Thanks for that reply, I've booked two other Doctor's visits for other opinions on this. I find it interesting that some doctors consider 15.2 high, while others seem ok with anything under 20, some ok under 25. What matters to me right now is that it is going down, not up, and I feel good.

So I'm in wait mode for another blood test, and opinions, in the meantime I'm back at work, changing my diet, and working out again. Life goes on...

[dadmo]

I'm fairly sure Sloan Kettering doesn't assume cancer until the number is over 26.