fluctuating afp levels

[kitty]

Hi I'm new to this site and am not sure exactly how it works. I have a few questions that I have been wanting to ask and I am hoping to find someone with a similar situation to what we are going through. My son was diagnosed with a non-semonoma germ cell tumor at 9 months old. After a l/o we found out it was 100% yolk-sac tumor. We were lucky and only had to go on servalince. His Afp levels went from 7000 pre surgery down 600, 2 weeks post surgery. It continued to drop to 97, 1 month post surgery to 40, 1 month after that and than to 26, 1 month after that, but the following month it went up to 28. We went in for the 3 month ultrasound and xray and it came back clear, at that point his Afp went down to 14 and we were happy. We went in for blood work 2 weeks after that and it elevated to 18 and 1 week later to 30. We were rushed back for another ultrasound and xray and they came back clear. We ended up doing another blood test and it went down to 26, and a week later it went down to 14. We are scheduled for an MRI in 2 weeks where will do more blood tests. I was just wondering if anyone else's levels have fluctuated like that and what was the outcome. He is now 16 months and is a very happy baby. He doesn't act like anything is bothering him or that he is sick in anyway. Could this be his body trying to get back to normal the Dr doesn't have any answers at the moment and I am feeling very lost.

[jpboucher]

Hey Kitty,

Welcome here. I'm sorry to hear your boy story.

There are biologic variations in levels of AFP of healthy individuals and sometimes there can be some laboratory issues resulting in fluctuating numbers. However, I am not aware of so much variation.

This article might be interesting : https://www.karger.com/Article/Pdf/342695

But I don't have complete access and I am unable to tell you what where the standard variation of AFP in the 93 % individuals who did have fluctuating AFP levels.

Usually, AFP is elevated at birth, but it reaches normal adults values between 8 and 12 months.

However, most experts don't assume cancer recurrence until AFP reaches 25, so with the latest value of 14, it's reassuring.

Hope everything is ok and keep us updated !

Jean-Philippe

[Chemin]

Hi Kitty,
First, I want to say, I can't imagine going through what you are right now with a 16 month baby on surveillance with testicular cancer. My thoughts are with you. Being a parent is stressful enough. I can not comment much more on the AFP numbers, except that pediatrics is different then adults, even young adults.. I think with your son being 16 months, things can look different lab-wise then what the average person on this forum is seeing. I suggest emailing Dr. Lawrence Einhorn. He is the top testicular cancer specialist. He answers emails and may be able to put your mind at ease. His email is [email protected]. He does answer his emails. Keep us posted on how your boy is doing.

[kitty]

I have read a lot about AFP levels and his last results are very reassuring. I think the biggest concern I have right now is that they are not down to were we want them to be. He had his surgery at the end of June and I thought by now it would be back to at least almost normal. I was told by the Dr. back in September that he was concerned that his levels were not normal yet, but then they dropped down and we were told to play it by ear. Since then it has gone up and down again. We were told that if it goes above 21 that they suspect that the cancer spread and also if it doesn't go back to normal by a certain time that they would consider the cancer has spread as well. My question is how long is that certain time, and if it keeps going up to 30 and back down are they still going to say it has spread. Also one of our Drs. told us that since the AFP values are still so low that an ultrasound and xray would not detect metastasis. We have an MRI booked for the 17th, but that is over a week away. If it has spread how fast does it spread and would we still have the same prognosis as we do now?

[jpboucher]

Hi Kitty,

Many good questions.

I am not aware of a time frame to answer your question. But in my head, if there was a spread of cancer, his AFP levels would be increasing, not fluctuating.

Yolk-sac is usually not spreading as fast as chorio of embryonal carcinoma. I think that the MRI on January 17th is quite good in terms of oncologic care.

Maybe your doctors should contact Dr Einhorn to help on your boy's case.

Keep us updated,

Jean-Philippe

[JeskiM69]

Kitty,

I would agree with the others that it would be a great idea to contact Dr. Einhorn. Since this is a pediatric case, it may well be different from what most of us here are familiar with.

Your son's AFP while staying above the "normal" value, is range bound. It is not displaying the typical pattern that one would expect to see with metastatic cancer....a pattern of ever increasing values. To me that's a good sign.

You may want to get other family members tested for AFP. There are cases where within families where there's a genetic/inherited trait that people maintain elevated AFP levels throughout life and have no cancer:

"
Another rare condition that may cause an elevated AFP level in a patient with a normal liver is hereditary persistence of AFP (HPAFP), which is asymptomatic. Only 19 families with HPAFP have been described over the past 28 years, many of whom also had urological disorders (malignant or benign). HPAFP can, therefore, also be considered in patients with an unexplained high AFP level
"

- Matt

[Davepet]

Here is what the Testicular Cancer Resource Center ( http://tcrc.acor.org/dictionary.html ) has to say about AFP:

Alpha-fetoprotein - AFP is a protein found in the bloodstream of some men with nonseminomatous testicular cancer (It is NEVER present in seminoma patients). The level rises when the cancer is growing and falls when the cancer is shrinking or has been surgically removed, so a blood test can possibly measure the progress of the disease and success of treatment. Because of this behavior, it is referred to as a tumor marker. Elevated levels of AFP occur in 75 per cent of patients with teratocarcinoma, embryonal cell carcinoma, and yolk sac carcinoma. (However, increased levels of AFP are also found in patients with liver diseases, such as cirrhosis, acute and chronic hepatitis and hepatic necrosis. ) The serum half life of AFP is 5 to 7 days, which implies that elevated levels of AFP should fall by one half of the initial level per week and should probably return to normal within 25 to 35 days after surgery if all of the tumor has been removed. The higher the level, though, the longer it will take to return to normal. 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.

( bold text by me)

So it sounds like you may be in safe territory, but TC in an infant is very rare, please email doc E & get him helping your son.

Dave

[kitty]

Thank you everyone! I do feel like we are doin good. I did email the Dr. but unfortunately he does not work with pediatrics so he couldn't give me much info. Our Dr's here are amazing, but since what my son is going through is very rare it is a learning experience for all of us. I guess we will just wait and see. I will definitely keep everyone posted and I appreciate all your advice Thank you!

[Mike]

Perhaps this is a natural variation or fluctuation in AFP levels in young kids. This old article points out that the levels of AFP seem to vary greatly in kids age 6 months to 2 years. https://www.ncbi.nlm.nih.gov/pubmed/9592840 (Full text at: http://erasmeinfo.ulb.ac.be/compendi...ENCEVALUES.pdf )

Thus, if it was me I would ask my doctor about this and see what they think. Also, I would want an expert in pediatric germ cell tumors to be overseeing my son's case. While further monitoring and imaging seems reasonable to me at this time (and I would have no issues doing this locally) but I would want to some input and oversight from a physician that is very experienced.

Finding this physician may be a little difficult but my first thought wold be to look into the authors that this published this article from the Malignant Germ Cell International Collaboration Group (MaGIC). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4279239/ There is one in Toronto and another option would be to try to see if Dr. Lindsay Frazier, the first author, had any suggestions.

Hopefully, you got my email to you as well in regard to other information.

Mike

[kitty]

Thank you Mike, I will definitely be asking the Dr. about this on our next visit.

I am very confident that his levels will stabilize, and this could just be his way of doing it. We will know more next week. We have already written down a few questions to ask the Dr's, and from all of the studies I have read so far it looks like it could just be his age.

[kitty]

Thought I would just give a little update. My sons MRI was today and it showed a couple lymph nodes measuring 1.5cm, and his AFP levels went down to 13. We were told that the Dr. is 100% sure that his lymph nodes are swollen due to the fact that he had a bit of a virus about a week ago. It seems that his AFP levels are on a downward trend and we will be staying on servalince.

[Trekga]

Wow! So glad to hear that AFP levels are on downward trend. When they follow up on lymh nodes?
I'm a mom of child with testicual cancer, but he is 17, please keep us updated.

[kitty]

Thanks, we are still waiting on dates for the next set of bloodwork. I'm not sure how or of they will follow up on the lymph nodes. He did tell is he was 100% sure it was due to a virus so I don't know if they are planning on doing a follow up. I will definitely keep you posted.