Markers

[mstlyn]

I just spoke with the surgeon we met at U of M and he told me Anthonys AFP is 10.8

On may 2nd anthony had markers done at the chemo clinic where they have always been done. His AFP was 3.8

Two days later, may 4th at U of M it is 10.8

Dr. Hafez said not to worry too much because of the difference from lab to lab.

Even with the lab difference though, 10.8 is still above normal range, so no matter where its done, it should be within range.

I just asked U of M to fax the lab report to Anthonys oncologist and they are doing that. They are going to check and see what reference range U of M uses. I don't know that will make any difference since 10.8 is out of range no matter where its done.

But what does this mean for Anthony? His cancer is not gone?

More chemo?

Tammy

[Margaret]

Hi Tammy, I have been thinking of you so much.

I will offer the little bit I know, but others here may know more.

First of all, I think I would consider having the numbers drawn again. I have heard from a few people here that labs can be off and you did mention in your post that it was a different lab. You may find out that their 'scale' is just different and he is still in normal range.

Second, it is my understand that they will want the number to be in normal range before doing an RPLND. I have only worked with 3 people on their numbers before RPLND so keep that in mind. My experience is limited. Others here may be able to tell you if they know of someone that had the RPLND with above normal markers. In our case, we had the markers drawn 2 weeks before sugery and then 2 days before sugery to be sure they were in the normal range.

I can't offer advice on the chemo question. I can guess that if they want to lower the number before surgery that could be an option, but again, I am unsure. In your shoes, I am sure that is one of the first conclusions I would make as well. "Will they just do another round of chemo, allow the number to drop again, then do the surgery??" But I am very unsure about how to answer this...my advice would be to ask the doctor and see where their heads are.

The one thing I do know about the markers, is that it can be somewhat normal for them to move slightly. I am sure you will get many responses to your post and with any luck they will all know more than me.

I know things are going to turn out okay and I hope both you and your son feel a positive outcome is headed your way.

prayers and hugs,

M

[mstlyn]

Hi Tammy, I have been thinking of you so much.

I will offer the little bit I know, but others here may know more.

First of all, I think I would consider having the numbers drawn again. I have heard from a few people here that labs can be off and you did mention in your post that it was a different lab. You may find out that their 'scale' is just different and he is still in normal range. I don't know about more chemo or anything they might decide to do. Right now I am praying that it was a bad test and it will still be normal.

Hi Margaret, good to hear from you and thank you for keeping us in your thoughts.

Yes their reference range can be different, however, 10.8 is still out of range for any lab to my knowledge. So unless I am wrong, I'm not real comforted by the range difference between labs.

U of M faxed it to Anthonys oncologist, so he will look at it and let me know if I can bring him to the chemo clinic for another blood test. Actually I will insist on it. Lord this is scaring me to death! I am so thankful to have people I can come to that have experience with this.



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[dt22207]

Welcome to the gray area. I've been there before. I believe the way the doctors view it is that your AFP is above normal when it goes over 6, but cancer isn't assumed until it hits 25.

My AFP bounced up to around 11 in the middle of treatment, which caused me some alarm. My doctor consulted with Indiana University and they all concluded that the 11 was not high enough to prompt additional chemo. But they didn't want to see it continue to increase.

The next blood draw showed the marker at 5. I believe this type of bouncing around is fairly common at low levels and there are things that can trigger false positives in some people. Hopefully the next time it happens I'll be calmer about it.

I think you're approach is a good one. Schedule another test sooner rather than later and see if this looks like a trend or just a one time thing.

[dadmo]

Tammy:
I know you're scared but lab results can really differ from place to place. Insist on have your regular lab run the tests.

[mstlyn]

Welcome to the gray area. I've been there before. I believe the way the doctors view it is that your AFP is above normal when it goes over 6, but cancer isn't assumed until it hits 25.

My AFP bounced up to around 11 in the middle of treatment, which caused me some alarm. My doctor consulted with Indiana University and they all concluded that the 11 was not high enough to prompt additional chemo. But they didn't want to see it continue to increase.

The next blood draw showed the marker at 5. I believe this type of bouncing around is fairly common at low levels and there are things that can trigger false positives in some people. Hopefully the next time it happens I'll be calmer about it.

I think you're approach is a good one. Schedule another test sooner rather than later and see if this looks like a trend or just a one time thing.

Thank you for this! You just gave me a great big sigh of relief. I will try not to let it bother me while Im waiting for the next test (yeah like thats gonna happen, lol) even though it will be hard. But your information at least lets me breathe a little better.

God Bless YOU!

[mstlyn]

Tammy:
I know you're scared but lab results can really differ from place to place. Insist on have your regular lab run the tests.

Yes we are going to do that. Jenn (from the chemo clinic) said she got the fax and she is flagging it and placing it on dr. danish's desk. I told her to put a note with it to let him know I want the test repeated no matter what. So I will probably be taking Anthony to Dr.Danish on Monday.

Also, I understand that labs can differ.. but if it's 10.8 that means its elevated no matter who is doing it. It is still out of range. Or is there some other explanation for that?

Thank you , dadmo

Hugs,
Tammy

[dadmo]

I know your signature has no teratoma listed but you may want to verify that. According to the American Family Physician teratoma increased AFP in 37% of the patients.

[mstlyn]

I know your signature has no teratoma listed but you may want to verify that. According to the American Family Physician teratoma increased AFP in 37% of the patients.

The original path report did not say anything about teratoma. Anthonys oncologist said he thinks the mass is teratoma.

I asked him, "wouldnt the original path have shown teratoma if that were present" ?

He said the teratoma didnt necessarily have to be in the path report. The EC and yolk sac were in the teste and the teratoma could have been up inside (he waved his hand around the abdominal area)

Is that possible?

[dadmo]

The pathology is done in slices and it's quite possible that a small amout of something could be missed.

[mstlyn]

The pathology is done is slices and it's quite possible that a small amout of something could be missed.

Ok, well I will try to keep everything posted in mind and focus on getting his treatment done asap.
That surgeon called from U of M to discuss my concerns about not using nerve sparing surgery.
He said that after chemo everything is a mess in there and it can be hard to even locate some of the nerves. He feels that it is important to be aggressive in making sure no cancer is left behind to give him the best outcome. He also said that even if its possible to spare the nerves on the left side, he doesnt feel that its a good idea to do that.
He said he would do the left side, and check for cancer .. if everything looks good he will spare the nerves on the right.

I think we are going to let this doctor take care of Anthony. I can't explain but I have a feeling that Anthony will be in good hands with him.

He did say that if they can spare the nerves on the right side, everything should work fine. (no loss of ejac. or anything) since both sides are responsible for that function.

[dadmo]

The most important thing is getting him cured. I agree with your doctor that you need to be agressive in the treatment. What doe's Anthony think?

[mstlyn]

The most important thing is getting him cured. I agree with your doctor that you need to be agressive in the treatment. What doe's Anthony think?

Well Anthony said right away that he felt ok about Dr. Hafez doing the surgery, but Anthony is very young and inexperienced about doctors, and questions to ask, risks involved etc ..

I am the one that told Anthony, I like Dr. Hafez too, but he hasnt had all that much experience doing this surgery, so I would like to look into this more first. That was fine with him. He acts as if he doesnt care one way or the other. I think that he is pretty much counting on me to ask the right questions and make the final decision.

I try to get him to talk more about it, but he just says, I'm not worried about it. I think that is because he knows Im on it like white on rice. At least I hope that is the case, because if the time comes that Im not here I would hope that he would be more assertive about his care. I hope he is paying close attention during discussions about what is going on and his treatment, so he learns how to handle things for himself if need be.

[Lori]

Tammy, my husband had a lot of teratoma in him and his AFP never normalized (even after high dose chemo). They actually did a chest surgery and a few weeks later the RPLND with elevated AFP. As soon as they took the mass out of the chest his AFP started going down and was normal soon after the RPLND. Hope that provides some comfort

[mstlyn]

Tammy, my husband had a lot of teratoma in him and his AFP never normalized (even after high dose chemo). They actually did a chest surgery and a few weeks later the RPLND with elevated AFP. As soon as they took the mass out of the chest his AFP started going down and was normal soon after the RPLND. Hope that provides some comfort

Thanks Lori, sure it does help. The unnerving thing for me is that there was no teratoma in the original path, so we can only guess that it may be teratoma, or cancer, or just possibly it's nothing. I guess we will see when the results for his lab work come back. Hoping that it is back within normal range.
I will let everyone know what we find out.

Thank you,
Tammy