Chemo or not chemo?

[merc]

Hello,

Well, I am new here. Here is the short story.

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3 Sep 2005: Emergency department at the hospital, for testicular pain. I was diagnosed testicular cancer

5 Sep 2005: First CT scan before the operation. It came negative

5 Sep 2005 : Blood test. Everything was normal, a part from the tumor markers: BCG: 20, AFP : 76.8

6 Sep 2005 : Operation to remove my right testicle.

20 Sep 2005: Second CT scan for my chest. "One or Two nodes adjacent left renal hilum, 6/7 mm. Remaining of vishera nornal. Lungs clear."
Some of it said something like: "Oh, we now noticed that these nodes were visible in the first scan as well. We must have been drunk that day, sorry".

20 Sep 2005: Pathology came back. The cancer was only 10% carcinoma, 5% seminoma, 50% mature teratoma, 35% Yolk-sac tumor.

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The problem is... the markers.
Here is how they go. Before the operation, hCG was 20 and AFP was 76.8.
After the operation, hCG went town. However, AFP went like this:

20 Oct 05: 3
9 Dec 05: 4
12 Jan 06: 6

I am a little freaked out. The normal schedule followed by the hospital is to do one blood test every 3 months. I actually did these test because I felt that I wanted to keep a closer eye on them.

I called my oncologist, and he was all grumpy because "I was trying to act like a doctor", and I should "stick to the normal schedule". He said he wants to wait for the next lot of hospital markers and CT scan, on the 25th of February.

The most sensible thing to do, in my very humble opinion, would be to book me for a PET scan and see why the markers are rising. However, HE is the doctor.

I know that markers fluctuate; however, from 3 to 4, and from 4 to 6, doesn't look very promising.

What would you do?

Help!

Tony Mobily
(I am also the person behind http://www.freesoftwaremagazine.com)

[merc]

Me again...

Hello,

Well, it's me again.
Somebody else suggested this in another forum:

http://medicine.iupui.edu/hematolo.html

Now... I live in Australia (Perth). I was wondering if there was any way to have a second opinion by email or by phone - I am happy to scan results etc.

Bye,

Merc.

[nzsteve]

Hi,

Im over in New Zealand, so I know what its like to not have easy access to the experts

First thing you can try is calling Indiana University Cancer Centre, 00 1 317 278 4822. Explain that youre overseas and are after a second opinion on your TC treatment. In my case they transfered me to someone who I emailed scans to and I got a reply next day. They are 19hrs behind NZ time, so if you called early tomorrow morning you might get lucky and get someone before the weekend.

Another option for you would be to contact one of the Aus based experts on the list here. They will be able to request the scan films and path report from your doctor to have a look at.

For your other questions, I dont think youve done anything wrong in getting the blood tests - its our body and our life on the line, so I think its right to want to be in control. While your AFP is rising it is still classed as a 'normal' reading, and the docs probably wont get concerned until it goes above 10. Im also pretty sure that lymph nodes arnt normally classed as enlarged until they go above 1cm.

That said, if you had the surgery in Sept, and they havent booked you for another CT scan and blood tests until February I think your right in moving things on yourself. (Before my relapse my scans / bood tests were being done 2 monthly, which I think is pretty standard). Your best bet is probably to talk to one of the Aus based experts and if you havent had one since Sept get a new CT arranged (rather than a PET).

I hope that helps, Im happy to help out some more if I can.

Steve

[merc]

I forgot to mention...

Hello Steve,

Thank you so much for your response!
I forgot to mention that I did a CT scan in December (at the beginning of Dec). THe lymphnode was stable, and yes, the doctor wasn't too concerned about it being enlarged.

So... I guess the only thing here is that they check you every 3 months, rather than every 2.

Also... well, at the hospital, they were fantastic. And my oncologist... the only thing I didn't like, is his last "being annoyied" at my extra blood tests, and recluctance to book me for a PET scan.

But maybe I am asking for too much...?

Merc.

[Jens]

Hi Merc.
My onco considers AFP below 10 as normal - or at least not something to act on. I fluctuate between 2 and 6.
Steve has already given good advice, so I'll just add that a CT scan every 3 month is pretty much standard. PET scans are rarely used in TC cases. Probably because they are expensive and CTs are considered sufficient.

Informations that may complete the picture is presence of vascular and lymphatic invasion - or not. This should be in your pathology report.
But all in all you should be fine as it is.

Best wishes
Jens

[merc]

OK. Thanks a million Jens. It's nice to hear of somebody who fluctuates between 2 and 6. Well, it sort-of gives me hope that my AFP fluctuates like yours does.

I'll keep you posted! I guess the real test is the one coming up on in a few weeks - at that point, we'll see if it's gone back down or if I join the club of those ones doing chemo.

Bye,

Merc.

[Chris'Mom]

Merc, my son Chris had chemo and RPLND and his AFP flucuates between 2 and four...take care..Mary Ellen

[Scott]

I think you're OK waiting to have tests again in February, and I don't think a PET scan is necessary, especially since it wouldn't detect teratoma. I understand the waiting game isn't easy!

[merc]

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I think you're OK waiting to have tests again in February, and I don't think a PET scan is necessary, especially since it wouldn't detect teratoma. I understand the waiting game isn't easy!
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I didn't know about the PET scan not detecting teratomas!

Scott: do you think my AFP might just be fluctuating, in your experience?

(it went from 3 to 4, and then 4 to 6...)

Bye,

Merc.

(Going to bed - it's nearly midnight!)

[mikeygti]

Welcome merc

Prior to my re-occurance (which for the record was a node detected on a CT scan ),my AFP fluctuated between 12 and 16. My oncologist said that 20-25 is the warning point for mets.

Best Wishes, AND good luck !

[dadmo]

merc:
My son's AFP fluctuates between 2 and 6. Our oncologist say not to assume cancer until it is over 16.

[merc]

Thanks mikeygti!

I was reading your "chemo diary" last night. I'm there with you!

I hope you're doing fine,

Merc.

[jrednib]

Don't panic...your Dr. is right. A small move of a point or two is not what they look for in AFP. AFP typically goes up big, when you have cancer...10 points, then 20 and so on. My AFP has never been normal, before or after RO. Ranges from 8.0 to 11 and goes up and down. Wait till the Feb date, nothing will change your survival rate in that short of time either way. Best of luck.

[merc]

Well...

I am seeing the oncologist in 1.5 hours.

Scary.

I'll keep you posted.

Merc.

[merc]

Back from the oncologist...

*** ALL CLEAR ***

AFP is gone back to 2. The CT scan doesn't show anything. The bone scan is negative too (that's a long story).

This marks 6 months in surveillance.

I feel like the luckiest person on the planet.

Thank you everybody. Thank you.

Merc.