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  • JeskiM69
    started a topic Need Advice (AFP).... possible late recurrence

    Need Advice (AFP).... possible late recurrence

    So on Wednesday Jan 9th I had my 4.5 Year Post Chemo checkup.

    ​When my Oncologist came in she said I don't have cancer....but one of my "Numbers" was up. That "Number" is AFP. My AFP was at 8.7 (Normal < 8). She initially said that she was not concerned about this. She figured it was just inflammation somewhere in my body and a response to that. After discussing this with my Onc. she had me take another AFP test before I left. Yesterday I was called and told that it went up to 9. So it went up 0.3 pojnts in a span of five days. I realize that 8.7 vs. 9.0 is splitting hairs, but obviously anything going up and not down is scary. Then she ordered a Pelvic/Abdo CT Scan and Scrotal Ultrasound (US) on my remaining guy.

    ​Today as I got my rational thoughts about me; I reached out to Dr. Einhorn because I knew that he typically does not worry about AFP till it's over 25 and I wanted his opinion His response was exactly that....this is nothing to worry about until it goes over 25. I should * not * do the CT or US. Instead I should have my AFP re-tested in 2-3 months.

    ​I called back to my Onco and mentioned that and gave her links to publications that I also have saying the same thing from Indiana. She replied that Dr. E. is not being aggressive enough....it's too passive. He has a tendency to undertreat, etc. I can see that pov, and sometimes, as a patient, I’d rather be more aggressive anyways and she knows it. She knows me well, and knew that this would play on my mind heavily/negatively, and that the scans etc would quickly put any worries to bed.

    ​I was treated as Stage 2B Pure Seminoma with I/O and 3xBEP. So to me *if * it's cancer then it's either a second primary in my remaining guy, or a recurrence of the previous cancer but transformed into Non-Seminoma…..not cool !

    ​So here's the problem: My Onco. is pushing for the scans while to foremost TC Dr. says to hold off. Personally I would rather not wait 2-3 months and I would rather get a jump on anything before it gets a jump on me. But at the same time I have had scares in the past which had turned out to be false alarms. Never got to the pint of needing CT or US. Is it worth both the $ and the radiation….or would you wait ?

    What do you all think ?

    ​I am open to all thoughts.


    Thanks,

    - Matt

  • biwi
    replied
    Wild ride indeed. Congrats!

    Leave a comment:


  • Harxxony
    replied
    So, two false alarms, heh. Great news.

    Leave a comment:


  • S P
    replied
    GLAD TO HEAR!!!!

    Leave a comment:


  • JeskiM69
    replied
    Well after subsequent blood tests, Ultrasound and MRI and three visits to my Urologist we have finally come to a conclusion on this silliness and I can now get off of this stupid carnival/roller coaster ride.

    First I’d like to touch on the AFP. We have 4 theories about the spike:

    1: It was done using a different test kit than the previous tests: There have been other times when a similar thing happened and my number went from the 4’s into the 5-7’s then back into the 4’s on another test kit

    2: Heterophilic or anti-animal antibody interference: My dog is 17 years old and had a bad bladder/urinary infection and had been peeing all over himself and he could not get up our wooden steps so I would have to carry him up the steps. So I was being exposed to animal wastes just before the AFP tests.

    3: Acute Liver damage: Also, in that week before my tests I was spray painting outside and the wind shifted and blew the vapors into my face. I was dizzy and nauseated for the next two days. The Liver may have been slightly damaged in that incident. When the liver regenerates it releases AFP.

    4: Diet. In the last two months before the tests I had gained nearly 10 pounds. One of the things I was eating too much of (besides sugar and beer) was Eggs. Eggs (and Salmon, which I also love to eat) are loaded with Biotin. High levels of Biotin can falsely elevate AFP blood tests.

    Either way; we will never really know what was up with those results.

    Now after my US and the MRI; which really brought out the details of what was going on in my sack, it is has been determined that I am dealing with a case of Tubular Ectasia of the Rete Testis.

    Essentially some of the tubes within the Rete Testis are dilated and showing cystic behaviors on the scans. This also explains some of the pain sensations down there. My US was inconclusive, but the MRI showed it very clearly.

    Here’s some more information:
    http://www.journal-ina.com/article.a...ulast=Kulkarni

    So now I can say that I am ALL CLEAR at the 4.5 year mark !!! What a wild ride it has been !!!

    -- Matt

    Leave a comment:


  • S P
    replied
    What a roller coaster.

    Yeah I don't trust my other testicle either. I totally understand the frustration and just wanting to get the other one out, but a lifetime of struggling with TRT and maintaining proper replacement levels isn't going to be any fun either. I would just keep a watchful eye on your remaining testicle, and stick with the periodic scans and ultrasounds.

    I was supposed to get a scrotal ultrasound last year and just never had time. I have a new order from my most recent physical, but am still dragging my feet. Too worried they'll "find something" and then it'll turn into a fishing expedition like this. I'll get it done eventually. I'm more eager to get caught up on some minor dental work than get my ball scanned! LOL

    Leave a comment:


  • Harxxony
    replied
    So typical, go checking for one thing, then they find something else, and then first thing goes fine. Ok, so far you can be sure that it isn't late recurrence, no liver cancer or other liver issue, but new thing is possible another primary TC. Well, 6x6 mm is not 1x2 mm, it is something to be concerned.

    Leave a comment:


  • JeskiM69
    replied
    I had my AFP re-drawn two days ago. Today I met with the Urologist to go over my Ultrasound results. The appointment was a mixed bag (yes, pun intended).

    My AFP went down to 4.1 So it's now comfortably within the normal range. My Oncologist wants to re-test it in three months. She said not to bother with the CT scan at this point....so no CT scan for now.

    The Radiology report for the Ultrasound came back inconclusive. There is a 6 x 6 mm diffuse hypoechoic area near the mediastinum (mid line) of the testis. There is weak vasculature and a minimal Hydrocele around it. There may be a tiny microlith associated with it...I say "may" because the Radiologist is unsure if it's a microlith vs. just a lighter pixel/artifact in the image itself. The recommendation is to get an MRI done in a week or so to hopefully get a better resolution on this area. Neither the Radiologist or my Urologist think that it's cancer but at the same time they cannot rule out a solid mass. The Urologist is leaning towards non cancer since the area in question is diffuse instead of a more delineated edge/boundary.

    I feel much better knowing that the AFP came back clean. But now the question is: WTF is going on in the testicle ?!?

    I asked my Urologist after I completed chemo why not just remove the remaining guy so that I'll never have to worry about it again.....here we are worrying about it again. Right now I'd rather just get it out, do TRT, and be done with testicles, period. I don't trust my remaining guy anymore and these checkups are getting old; fast.

    - Matt

    Leave a comment:


  • JeskiM69
    replied
    Agreed that the combination of the 1x2 mm US "finding" and the fact that the AFP is still very low tells us very little. I'd rather be "taking action" then doing "nothing" which one can argue that that's wait surveillance is.

    No. I do not do monthly checks. I do the occasional check, but not on any regular schedule. I can tell you that four people (Myself, my GP, Urologist, and Oncologist) have done the test on me and not one of them has felt it. I doubt that anything that small is palpable anyways.

    I did have my AFP drawn again today, and I see my Urologist to go over the US late Friday morning.

    - Matt

    Leave a comment:


  • Trekga
    replied
    Although I am not a medical professional I suggest waiting to see repeat AFP, and getting another u/s. If both are indicative of possible 2nd primary tumor than please reach out again to Dr. E. to get his thoughts. So sorry you are in waiting mode still. Curious, and apologize if TMI but have you been doing monthly checks? Forgive me if you mentioned it previously?

    Leave a comment:


  • Harxxony
    replied
    Well, 1x2 mm area and AFP 9 still don't tell anything. Another US in a while can be usefull. Hold on.

    Leave a comment:


  • JeskiM69
    replied
    So yesterday I had a scrotal utrasound (US). Just before I left I managed to get a glimpse of the tiny summary pictures on the machine. One of them had a "spot" that caught my attention. Twenty minutes later I got a call from the radiologist who is going to write the report asking me to come back for more pictures. So I go back and within a minute he is focused on the exact same spot that I noticed.

    The US picked up a tiny (1x2 mm) hypo-echoic area with some vascularity. The rest of the testis looked perfectly normal. So after a good discussion with the radiologist about my background, opinions, etc I left. Obviously giving my background this may be of concern. He mentioned that it could simply just be a focal Orchitis and a few other things. I have a follow up appt. with my Urologist this Friday (Feb. 1) to go over this. I will also be getting my AFP re-checked this week to see where it has gone.

    Surprisingly this is a huge weight off of my shoulder ! I am strangely happy that the US did find something. I suppose it's because it means that it may not be a late recurrence of the previous cancer. It may simply be a second testicular primary.....far better than a recurrence of the previous one in my mind....and if it is then it likely found very early.

    My guess is that if the AFP goes up then this guy may be coming out; provided I have a clean CT scan. If the AFP goes down then I guess they'll just want to monitor it.

    I guess this next week will get "interesting" on this front to say the least.

    - Matt

    Leave a comment:


  • Harxxony
    replied
    Originally posted by JeskiM69 View Post
    There are documented cases where a late relapse of Seminoma can indeed be Non-Seminoma. So there is no guarantee that a late relapse will be the same Histology as the initial occurrence. As far as my historical AFP levels it looks like this: From July 2015 to July 2016 I steadily crept up from 2.5 to 7.0. Then since then I have been hanging around 4.5 Yes, I agree that this AFP is barely elevated at all. Which is why I am holding out on the CT scan. Blood work is easy and fairly cheap. The downside is the mental state plus a bit of the "Not Knowing / Waiting" state which sucks. I forgot to mention that my Onco. specializes in liver and gastrointestinal cancers, all of which can bump AFP....which her concern tilts more towards issues in that area vs. TC. Again, shes' still not jumping on this as cancer, maybe more related to liver / gastro issues. - Matt
    I don't think that seminoma can somehow turn to nonseminoma, these are two completely different histological things, it's possible that pathology reports in these cases were inadequate and that pathologists missed nonseminoma components which were to small. But if you done full chemo, there is practically zero chance that some small nonseminoma component survived. As I red, AFP is very releable marker and it is generaly not related to something that isn't liver/TC cancer or liver damage, but in cancer situations it must be high, small values don's say anything. In your case I predict that it is nothing and nothing will be found.

    Leave a comment:


  • JeskiM69
    replied
    There are documented cases where a late relapse of Seminoma can indeed be Non-Seminoma. So there is no guarantee that a late relapse will be the same Histology as the initial occurrence.

    As far as my historical AFP levels it looks like this:

    From July 2015 to July 2016 I steadily crept up from 2.5 to 7.0. Then since then I have been hanging around 4.5

    Yes, I agree that this AFP is barely elevated at all. Which is why I am holding out on the CT scan. Blood work is easy and fairly cheap. The downside is the mental state plus a bit of the "Not Knowing / Waiting" state which sucks.

    I forgot to mention that my Onco. specializes in liver and gastrointestinal cancers, all of which can bump AFP....which her concern tilts more towards issues in that area vs. TC. Again, shes' still not jumping on this as cancer, maybe more related to liver / gastro issues.

    - Matt

    Leave a comment:


  • Harxxony
    replied
    Your primary TC didn't elevate AFP, so there is no logic that this is reccurence. Did your AFP go up and down before, even if it was allways bellow limit? Elevation of AFP usually coresponds with tumor size. US of remaining testicle and maybe US of the liver can be indicated, but not with so low AFP, so small elevation of AFP doesn't indicate anything.

    Leave a comment:

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