Nonseminoma surveillance AFP question.

[Chris'Mom]

Glad to hear your good news...Mary Ellen

[Jiddy78]

I went in for the CT early...Needed the peace of mind...All clear...Much ado about nothing...Cost me some dough, but peace of mind was well worth it....Thanks everyone.

[dt22207]

One thing my doctor told me to remember is that because radiologists get sued a lot, they have to note everything they see even if they think it's not significant. Because they have to practice defensive medicine, the buck gets passed to the oncologist and ultimately it gets passed to us, because the oncologist won't refuse to check out something that we're concerned about given the radiologist's uncertainty.

Going into this, I never realized just how many decisions I'd have to be making. You wind up having to get very educated in your particular case and determining in your own mind how much uncertainty you can accept (as well as how many procedures you're willing to undergo). It's empowering, but frightening. Maybe someday I'll get used to it.

[Jiddy78]

From things I've read here it seems strange lung spots pop up now and again and can be loads of benign things. Check out this thread for some reassurance that you are NOT alone....
http://www.tc-cancer.com/forum/showt...te+chip+cookie

Thanks for the link Karen! I hope my situation ends up just the same...Much ado about nothing and an "all clear."

[Karen]

From things I've read here it seems strange lung spots pop up now and again and can be loads of benign things. Check out this thread for some reassurance that you are NOT alone....

http://www.tc-cancer.com/forum/showthread.php?t=5348&highlight=chocolate+chip+cookie

[Jiddy78]

I was told that the route of spread varies depending upon the type of cancer. The oncologist told me that seminoma is quite predictable and travels through the lymph system. Someone with more experience with seminoma will have to confirm that, as I didn't look into it.

I had non-seminoma (components of seminoma, yolk sac and choreocarcinmoa). Doctors told me that of these two, the choreocarcinoma is the more unpredictable and it likes to jump directly via the bloodstream to other parts of the body, with the brain and lungs being two prime spots for it to land.

FWIW this is why I was advised that an RPLND was not recommended for me following surgery, because it wouldn't offer assurance that the cancer had not spread because of the type of cancer involved.

Personally, if I were in your shoes, I would be OK with April 27 vs. April 13, but that's a personal decision. I'm not sure how similar our diagnoses are, so I would hesitate to extrapolate too much from what I've been told.

I've been told that because my first CT scan showed nothing and because my tumor markers were elevated pre-surgery and are now low, CT scans are not likely to be the first place doctors would pick up the cancer if it came back. The tumor markers would likely be the first warning sign because apparently I'm very sensitive to the cancer and my body produces tumor markers. I believe that some people are less sensitive and less likely to produce tumor markers, but again that's not something I researched too much.

Initially my oncologist is going to stick to the recommended schedule for CT scans and X-Rays, but he said he would be very surprised if that is where any problem first showed up. More likely, he said, sticking closely to the tumor marker testing would be most predictive.

My tumor was roughly 70-75% teratoma, 20% embryonal, and 5-10% yolk sac....Choriocarcinoma was not a part of it as far as I know. I just figure that if it's there, it's there and 2 weeks shouldn't be ruining my cure rate outlook as that is still very early in the detection process...plus an x-ray, as I understand it, especially one done in my local radiology center (which I don't necessarily regard as the pinnacle of scientific research, if ya get my drift), can have many things on it that have little to do with cancer.

What vexes me is that all that is sent to my doctor is a report, not the actual x-ray pictures....and the report states "something to note"...Way to be definitive or give me some direction. So the doc takes it semi-cautiously rather than cautiously as he has my CT on file from just 4 weeks before as all clear and 8 months worth of normal blood tests, so off to the cayman islands he goes...And frankly, I'm not a semi-cautious type of guy anymore. If my toenail is hanging I have cancer, I swear.

Talking with you guys helps relieve the angst. Just knowing somebody else is doing this (not that I want them to) and can empathize means a lot.

[dt22207]

Welp, my doc is going on vacation and I can't see him until April 27th...I've done some net searching about possibly lung cancer and from what I read the AFP/HCG tests aren't necessarily the ones used....Now, I had my last CT (free and clear) of Feb. 2 and this chest x-ray was on March 5...My "gut feeling" is that this "something to note" on the chest x-ray is much ado about nothing...but I haven't been able to get a hold of the doctor, just his nurse (mayo clinic)....My question is, should I be concerned waiting to April 27th? From what I've read, normally testicular cancer will travel to the lymph nodes first THEN the lungs....I guess I didn't get clear definition in where the chest x-ray had noted the "abnormality" but my understanding is that the chest doesn't pick up the abdomen nodes and that would be the "first stop" before the lungs? Am I off base?

Any help/advice is much appreciated.

I was told that the route of spread varies depending upon the type of cancer. The oncologist told me that seminoma is quite predictable and travels through the lymph system. Someone with more experience with seminoma will have to confirm that, as I didn't look into it.

I had non-seminoma (components of seminoma, yolk sac and choreocarcinmoa). Doctors told me that of these two, the choreocarcinoma is the more unpredictable and it likes to jump directly via the bloodstream to other parts of the body, with the brain and lungs being two prime spots for it to land.

FWIW this is why I was advised that an RPLND was not recommended for me following surgery, because it wouldn't offer assurance that the cancer had not spread because of the type of cancer involved.

Personally, if I were in your shoes, I would be OK with April 27 vs. April 13, but that's a personal decision. I'm not sure how similar our diagnoses are, so I would hesitate to extrapolate too much from what I've been told.

I've been told that because my first CT scan showed nothing and because my tumor markers were elevated pre-surgery and are now low, CT scans are not likely to be the first place doctors would pick up the cancer if it came back. The tumor markers would likely be the first warning sign because apparently I'm very sensitive to the cancer and my body produces tumor markers. I believe that some people are less sensitive and less likely to produce tumor markers, but again that's not something I researched too much.

Initially my oncologist is going to stick to the recommended schedule for CT scans and X-Rays, but he said he would be very surprised if that is where any problem first showed up. More likely, he said, sticking closely to the tumor marker testing would be most predictive.

[Jiddy78]

First of all, your gut feeling is very likely right. Second, testicular cancer that spreads to the lungs is still testicular cancer, not lung cancer, so be careful you're reading the right information. Finally, while some types of testicular cancer nearly always spread through the lymphatic system first, some cell types can spread by blood directly to the lungs.

But... April 27? What's your current surveillance schedule? Shouldn't you have an appointment again before then?

April 27th is actually pushing up my CT Scan a little over a month. Right now I have blood drawn monthly, chest x-rays every other and CT's every 3-4....My last CT was on Feb. 2...Next one set for June 4....It's now moved up to April 27th due to this recent chest x-ray development.

I am using a doctor at the Mayo clinic in Jacksonville...I live about 3 1/2 hours drive from there...For quality concerns, I drive up there for all my CT scans. All of my blood work and chest is done locally and forwarded to the doctor. Being as it is just a local radiology and just a month after a completely clean CT (and blood drawn the day prior to the chest on Mar 3 was all good AFP 1.5, HCG <2), the doctor's nurse is conveying that I shouldn't be concerned and they'll just move up the CT as a precaution....Of course, they originally, due to doctor's vacation, set this appointment for April 13, but I'm a tax accountant and asked if I could get the next available day after the 17th if that was the case...so April 27th it is....

But yeah, I only meet with the doctor at each CT interval in the surveillance every 3-4 months as I would prefer to keep with Mayo "just in case" as I feel their handling of my orchiectomy and the fact that they do so much cancer research I would be in better hands than a local oncologist.

I have no symptoms that I can tell.

Peace of mind is hard to accomplish, ya know? Even after 8 months of being clean you never forget...maybe for moments, days, a week/weeks, you forget about it....but then it creeps back up in the brain. It really takes a toll on my family, most specifically my wife, who was the one to receive this chest x-ray news...

[Scott]

First of all, your gut feeling is very likely right. Second, testicular cancer that spreads to the lungs is still testicular cancer, not lung cancer, so be careful you're reading the right information. Finally, while some types of testicular cancer nearly always spread through the lymphatic system first, some cell types can spread by blood directly to the lungs.

But... April 27? What's your current surveillance schedule? Shouldn't you have an appointment again before then?

[Jiddy78]

I had a situation where my AFP jumped during chemo, but stayed at very low levels.

My doctor consulted with Indiana University to reach a conclusion (the jump was not significant, they said). The reason he did the consultation, he said, was because Indiana has seen so many TC patients that they have experience with just about every possible variety of test results.

If you're nervous, perhaps your doctor would make a phone call and consult with them, though I was essentially told what others here have said that markers fluctuating at those low levels is commonplace and not a cause for worry.

As to a tumor growing without being detected by markers, what I was told is that it would be most unlikely if the initial tumor caused elevated tumor markers for a relapse to not also show elevated markers. But not impossible. It sounds like they're doing the right thing in requesting a CT scan ahead of schedule, but probably only as a precaution.

Welp, my doc is going on vacation and I can't see him until April 27th...I've done some net searching about possibly lung cancer and from what I read the AFP/HCG tests aren't necessarily the ones used....Now, I had my last CT (free and clear) of Feb. 2 and this chest x-ray was on March 5...My "gut feeling" is that this "something to note" on the chest x-ray is much ado about nothing...but I haven't been able to get a hold of the doctor, just his nurse (mayo clinic)....My question is, should I be concerned waiting to April 27th? From what I've read, normally testicular cancer will travel to the lymph nodes first THEN the lungs....I guess I didn't get clear definition in where the chest x-ray had noted the "abnormality" but my understanding is that the chest doesn't pick up the abdomen nodes and that would be the "first stop" before the lungs? Am I off base?

Any help/advice is much appreciated.

[dt22207]

I had a situation where my AFP jumped during chemo, but stayed at very low levels.

My doctor consulted with Indiana University to reach a conclusion (the jump was not significant, they said). The reason he did the consultation, he said, was because Indiana has seen so many TC patients that they have experience with just about every possible variety of test results.

If you're nervous, perhaps your doctor would make a phone call and consult with them, though I was essentially told what others here have said that markers fluctuating at those low levels is commonplace and not a cause for worry.

As to a tumor growing without being detected by markers, what I was told is that it would be most unlikely if the initial tumor caused elevated tumor markers for a relapse to not also show elevated markers. But not impossible. It sounds like they're doing the right thing in requesting a CT scan ahead of schedule, but probably only as a precaution.

[Jiddy78]

So yeah, my afp number has dropped to 1.5 this month....and I let out this huge sigh of relief, and lo and behold just moments later I am informed that my chest x-ray "has something to note" and I need to go back up to Jax in 2 weeks for a ct scan-3 months ahead of my surveillance schedule.

AFP: 1.5, HCG <2, everything else ordinary in the blood tests....Is this much ado about nothing? The doctor's office seems to be playing it as "just in case"...Is it possible for numbers to not show, but still have a growth??? Damn it's gonna be a long couple weeks.

[dadmo]

My son's afp rose for 5 straight test's. It never go outside of the normal range and the just started dropping. To the doctor's it was no bug deal but it scared the heck out of us. We mentioned that anxiety to the doctor so now all the doctor puts on the notice is "your labs are fine". I know it stupid but for us, not seeing the actual number is better.

[Jiddy78]

Nothing to worry about in that series of tests, honest. It's normal for the reading to fluctuate. I predict you'll see a lower number in the next couple tests (and even if you don't, as long as you're so clearly in normal range, I wouldn't worry).

Thanks for the quick response Scott...Just any sort of trend gives me the heebie jeebies, but the numbers are still small...Now every ache and pain gives keeps me up at night again :P ...hopefully all continues well...Until then, gonna enjoy the big game...Go Bears!

PS...This site is fabulous. Thank you.

[Scott]

Nothing to worry about in that series of tests, honest. It's normal for the reading to fluctuate. I predict you'll see a lower number in the next couple tests (and even if you don't, as long as you're so clearly in normal range, I wouldn't worry).