Tumor marker fluctuations - AFP

[ChrisHAM]

Hello everyone,

Firstly I would like to thank you all for keeping this forum alive and giving all of us affected by TC (in one way or another) a place to meet and exchange information and our stories.

I found this forum early in 2015, just when I was diagnosed but have not posted on here as I have kept very much to myself with my thoughts and feelings. However, it has helped me tremendously just to read other guys stories or look for answers to my questions as I believe that pretty much every topic has been covered here at some point in the past.

To introduce myself: I am 31 years old and from Hamburg, Germany; diagnosed with stage I TC in December 2014.

A brief overview:
12/31/2013: Felt small hardened nodule in right testicle and knew that that was not good, confirmed as TC by the doctor the next day
01/05/2014: bHCG < 1.2, AFP 3.12 IU/ml, LDH 196, all scans clear
01/06/2014: Right I/O = non-seminoma, 100% EC, Stage I

Decision for active surveillance, supported by one of the leading oncologists in Europe

06/02/2014: bHCG < 1.2, AFP 2.4 IU/ml, LDH 173
07/17/2014: bHCG 45.6, AFP 117 IU/ml, LDH 187
08/01/2014: MRI abdomen: clear/no changes to previous scans / X-Ray chest: all clear
08/11/2014: CT thorax: two suspicious nodules 3.5 cm (paratracheal, left) and 1.6 cm (upper left pulmonary lobe) - Stage IIIA (good prognosis)
08/14/2014: bHCG 2.9, AFP 39.6 IU/ml, LDH - (yes, the markers went way down by themselves a day before starting chemo)
08/15/2014: Starting 3x BEP, tutor markers returned to normal after 1st cycle
12/10/2014: Surgical resection of what was left of the two nodules = dead tissue only; no RPLND as no suspicious lymph nodes at all

Back to surveillance; low-dose CT thorax, MRI abdomen and US remaining testicle every three months, tumor markers every month, MRI head every 6 months, pulmonary function test every three months.

All clear for 23 months

I have been dealing with quite a bit of anxiety over the first six months after my chest surgery, mainly due to the fact that I was having some sort of breathing issues ever since the surgery. All imaging studies and lung function tests are now back to completely normal but every couple of months I am still having episodes of problems with breathing (in)...

Other than that I am doing OK I guess, just obsessing over my check-ups and my tumor markers, which leeds us to my question:

Below are most of my AFP levels since I have finished chemo in October 2014; I am fully aware that the general consensus is that, as long as the markers are within the normal range (here 0-5.5 IU/ml) there is no need for concern. What I would like to know from you guys: is it also normal to kind of have a steady rise (especially since May of last year)? Shouldn't those values stay about the same? I also found the overview of possibly causes for elevated levels of AFP here on the forum but none of the mentioned things really applies to me...

If anyone is willing to post a couple of his AFP-levels from previous check-ups I would be very grateful... just to see how the AFP behaves in other people.

Another question: my last CT/MRI scans were done on June 30; for the past four weeks I have been having a slight but persisting pain in my lower left back - could this be cancer related or unlikely since it has only been two months since the scans?

Other than that, please feel free to comment or ask anything at all. Thank you! :-)

08.10.2014	7,4	IU/ml
03.03.2015	3,7	IU/ml
25.03.2015	2,9	IU/ml
26.05.2015	2,2	IU/ml
17.06.2015	2,7	IU/ml
15.07.2015	2,5	IU/ml
03.09.2015	2,5	IU/ml
29.09.2015	2,7	IU/ml
02.12.2015	2,9	IU/ml
18.01.2016	2,6	IU/ml
10.02.2016	2,8	IU/ml
29.02.2016	2,8	IU/ml
23.03.2016	2,9	IU/ml
15.04.2016	2,5	IU/ml
11.05.2016	2,8	IU/ml
20.06.2016	3,1	IU/ml
12.07.2016	3	IU/ml
08.08.2016	2,9	IU/ml
08.09.2016	3,3	IU/ml

[Sergyo]

My markers result on 06/24/2016:
afp 4.1
bHCG < 0,1

My markers result on 07/24/2016:
afp 2.7
bHCG < 0,1

My markers result on 08/24/2016:
afp 2.2
bHCG 0,14 !!!!!! So it has raised but still normal!And I was alarmed about this!
T level 482

My markers result on 09/05/2016:
afp 3.37 So it has raised but still normal!And I am very alarmed about this!
bHCG 0,14 it has declined

[ChrisHAM]

Hi Sergyo,

Thanks for posting your marker results here... I know how frustrating it can be to see those markers go up and down (even though they are of course well within the normal range).

When I was diagnosed with my recurrence on July 17 2014 both AFP and bHCG had jumped from bHCG < 1.2, AFP 2.4 IU/ml on June 2 to bHCG 45.6, AFP 117 IU/ml on that day so I am not sure if it is possible to "forecast" a future relapse even if one did check the markers every week and look for a possible trend while on surveillance... or if they just jump to a much higher level from one day to the other in case of an actual relapse?

What about the other gentlemen on this forum? Anyone with a more detailed insight on the behaviour of these markers or personal experiences?

[jpboucher]

Hey Chris,

I had also 100 % EC.

First, return of cancer can't be assume until AFP reaches 25. So, your markers are very good ! Also, you must divide your results by 1.21 to convert your results into ug/L.

For your second question, I would say very unlikely because your previous scan was 2 months ago, and also considering your pathology of 100 % EC.

Jean-Philippe

[jpboucher]

Hey Chris,

I had also 100 % EC.

First, return of cancer can't be assume until AFP reaches 25. So, your markers are very good ! Also, you must divide your results by 1.21 to convert your results into ug/L.

For your second question, I would say very unlikely because your previous scan was 2 months ago, and also considering your pathology of 100 % EC.

Jean-Philippe

[ChrisHAM]

Hi Jean-Philippe,

Thank you for the reassuring words; yeah, I will keep a close eye on the markers anyways. My doctors don't mind if I get them checked every 3-4 weeks, so apart from the hassle of going to the doctor's office and getting the blood drawn it is something which helps me to relieve my anxiety a little...
Anyways, my 24-month check-up is coming up on September 30 (with MRI abdomen and CT chest) and my GP just did an abdominal ultrasound (due to the back pain), which came back all clear.

Where are you being treated and how does your surveillance protocol look like for the next two years? Has your AFP always been at normal levels throughout?

Christian

[Davepet]

, I will keep a close eye on the markers anyways. My doctors don't mind if I get them checked every 3-4 weeks, so apart from the hassle of going to the doctor's office and getting the blood drawn it is something which helps me to relieve my anxiety a little...

Actually, it sounds like the opposite effect, tracking those numbers seems to be keeping you on edge rather than relieving anxiety. The reason there is a normal range is because it is entirely normal for the numbers to fluctuate a bit. Only a steady increase going over the normal should be reason for concern. You are two years clear, you should be getting comfortable with survivorship. Consider backing off to the NCCN guidelines for marker testing.you may be surprised to feel better after a while. Our cancer experience may forever change us, but seems best to try & not let it control us.

Dave

[ChrisHAM]

I think you're quite right Dave!
There have been phases during the past two years where I have been doing a lot better than now... but also a lot worse. Usually theses periods of extreme anxiety go along with a manifestation of some sort of physical "issue"; previously it has been back pain, extreme breathing issues, persisting headaches... and now the back pain again.
I checked the NCCN guidelines and do realise that I have been getting excessive checkups over the past 24 months; will try to follow your advice and get my markers checked only every three months from here on out... but it will be hard for me for sure!
What's your surveillance protocol like after all these years (sorry, I'm sure it is somewhere on this forum already)?

All the best!

Chris

[jpboucher]

Where are you being treated and how does your surveillance protocol look like for the next two years? Has your AFP always been at normal levels throughout?

Christian[/QUOTE]

Hey Chris,

I am treated in Quebec City.

My AFP was always normal. I don't think my tumor ever produce it.

Here is my surveillance protocol. We follow PMH guidelines, here they are : http://www.uhn.ca/PrincessMargaret/H..._GU_Testis.pdf

You will find the information on page 22 if I'm right about your response to chemo.

Jean-Philippe

[Davepet]

What's your surveillance protocol like after all these years (sorry, I'm sure it is somewhere on this forum already)?

At around the 5 year mark, my "surveillance" became a once a year visit with my onc & blood markers.

Dave

[ChrisHAM]

Thanks, Jean-Philippe (and Dave); yes, you're right about page 22... :-)
I have not come across this surveillance protocol before but it is good and reassuring to see that check-ups are needed less frequently than what my urologist is suggesting. I believe he is being just extra cautious, sending me for scans every three months for the first 24 months... anyways, no harm in getting an abdominal MRI whatsoever.
The CT of the chest is low-dose and it's a brand new 256-slice scanner so the actual radiation is comparatively low (according to the radiologist).
It was suggested that there should be another set of scans at the 30 month mark and then at 36 months, after that yearly until 5 years are completed.

My back pain still worries me and my orthopedist suggested a lumbar MRI if the pain does not ease within the next two weeks; I will have my abdominal MRI next week Friday anyways, so I will see if they can fit the lumbar scan in as well...
Being on surveillance can be challenging... :-(

Chris

[Davepet]

Just try to keep in mind that back pain is one of the most common complaints of humans worldwide,& is only VERY RARELY associated with cancer of any sort, much less TC.

Dave

[ChrisHAM]

Hi Dave, yes, I believe it might also be caused by my bad posture (especially sitting in the office without much movement) and also some weight gain - since I finished treatment I put on 18 kg and of course it's not all muscle. :-)

On another note: I am very happy to announce another "all clear" as I had all tests and scans done yesterday and today. This is now 24 months past the end of 3x BEP which I believe is the "correct" way to count as during the surgery in December 2014 only dead tissue was removed.

Wishing everyone a nice weekend and of course all the best and good health for the future!

Chris

[Davepet]

My advice is to work on the posture & losing weight. I've just had 12 physical therapy session to help alleviate sciatic pain due to bulging lumbar disks. posture was stresses over & over (I thought I *WAS* standing straight!)also weight loss was discussed as being helpful in reducing back stresses.The exercises have helped tremendously, if I had started them at your age I might not have been this bad now.

Dave

[FLnative]

I am in a similar boat. I Had 99% EC diagnosed 10/02/2015
4x EP Numbers normal but still had a 2cm lypmphnode
RPLND 3/04/16
All clear until this week my onc says my AFP and ONLY my AFP has risen to just outside of normal, and did not give me a specific number. I will find out soon. Theyve chosen to increase my surveillance. Shame I just got my port out too...