CSN Login
Members Online: 15

Here I go again

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

Just wanted to introduce myself.

As I sit here typing, I am recovering from yesterday's orchiectomy. This is my second, the first was 35 years ago (~1975) when I was 20. The first time they performed an RPLND, with negative pathology & sent me on my way (well, more or less, my memory from back then is getting dim).

During recovery then, I got an infection (probably staff) before I got out of the hospital. Over the next 15 years, on two occasions I wound up in surgery for intestinal obstructions due to adhesions. I've been fine the last 20 years, although unable to be a father due to retrograde ejaculation from the surgery.

Now I get to wait again. one of the blood markers indicated cancer, & they did an on the spot pathology test while I was under & it was malignant. They haven't told me what type of tumor(s) yet, but they told my wife that chemo is likely.

I'll find out more on Monday.

Dave

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

Not much to report, my cancer was mixed embryonal & seminoma. The CT scan on Wed. should tell us something, but my doc thinks chemo is unavoidable due to the embryonal cells.He's also holding off on TRT until he talks to the oncologist.

Dave

terato's picture
terato
Posts: 384
Joined: Apr 2002

Dave,

I was diagnosed and treated for embryonal testicular cancer between 1980 and 1982, and am still (I am knocking on my computer disk as I type!) cancer free, although I generally test above normal on my AFP marker, with no evidence of tumor (that I know of), which does keep me up nights.

At the time, I had my left testicle removed, followed by the lymph nodes three months later, with combination chemo (cisplatin, bleomycin, and vinblastin) over a two-year period. I understand today's chemo protocols are gentler than the "unholy trinity" of years ago?

There is life after testicular cancer!

Love and Courage!

Rick

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

I don't know if today's chemo is gentler or not, they still use a three way combination for most cases.

My latest CT showed "nothing significant" & the doc said it might have been confined to the testicle. Haven't got the most recent blood test back to see if my markers have dropped. Tomorrow, my case goes to the tumor panel & on the 19th I see the doc again to see what they recommend.

Dave

terato's picture
terato
Posts: 384
Joined: Apr 2002

Dave,

My AFP is generally above normal but below 25, keeping me in a constant state of waiting for the next proverbial shoe to drop, even though it has been 28 years since I concluded my protocol of chemo. I suppose the fear never really goes away.

Good luck!

Rick

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

You can't be afraid for the rest of your life, but the caution should never go away, after all I was a 35 year survivor before I got my second TC. It's very rare, but it can happen.

Keep up on the self checks & whatever maintenance your doctor recomends.

Dave

terato's picture
terato
Posts: 384
Joined: Apr 2002

Dave,

I know it is possible, but still so incredible to think about something so long ago reappearing at at time when a guy has the rest of his life planned out. On your initial diagnosis, was it on the testicle that had been undescended at puberty? That was my situation. My family physician at the time "corrected" it with testosterone injections. The testicle dropped, but I wound up with TC 14 years later.

Stay well!

Rick

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

I didn't have that problem at all. It *is* possible that I an a DES son, though. My mother recalls being given "something" while she was carrying me, but had no idea what it was.

Dave

terato's picture
terato
Posts: 384
Joined: Apr 2002

Dave,

I know for a fact that my mom took DES while she was pregnant! Do you know of any researchers doing long-term investigations of DES sons? It would be interesting to compare case studies.

Rick

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

I'm not aware of any particular studies, but they are still looking into it. Here's a few sites with more DES info:

http://www.desaction.org/

http://www.cdc.gov/DES/consumers/about/

http://www.cancer.gov/cancertopics/factsheet/Risk/DES

There is apparently nothing conclusive linking DES exposure in utero to increased risk of TC. however there is an indication that undescended testicles can be a result of exposure, & undescended testicle *do* put you at an increased chance for TC.

Dave

terato's picture
terato
Posts: 384
Joined: Apr 2002

Dave,

My alpha fetoprotein (AFP) markers have always come in between 7.0 and 13.0, but never near 25.0, with no physical evidence of tumor, despite repeated CT, MRI, and ultra-sound scans.

Do you have the results of your most recent blood tests?

I am praying for a cancer-free Dave!

Rick

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

Rick,
I don't know one marker from another. All I know is that just prior to my surgery 3 weeks ago, one of them was at 275 & it *should* have been close to zero.I haven't got the results of the last test yet, I'll get them Tue the 19th.

Dave

terato's picture
terato
Posts: 384
Joined: Apr 2002

Dave,

I can't remember how the other two salient markers are gauged, but I don't believe the AFP goes that high. Are you sure there was no decimal point in there somewhere? The results of my AFP markers always came in last, so that score may be from one of the other two? That TCRC website provides info as to how these things are scaled. However, your oncologist might advise a retest, if the results of this one are suspect. When I began getting above normal AFP scores, my oncologist really thought it might be coming back, checking every possible point of recurrence, only to find nothing. He even sent me to the University of Chicago's specialist Nicholas Vogelszang, M.D., who also found nothing. Let's hope that your doctor will also find nothing!

My latest AFP, 10.8, was still above what is regarded as "normal" Ten years ago, it had gone as high as 13, with no physical evidence of tumor formation. I would be lying, if I said that I no longer worry, but it has happened so often that I regard it as the unsettling anomaly of my specific body chemistry.

Let's hope your situation is similar.

Stay strong!

Rick

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

OK, I did some research & it was the hCG marker that was at 275. The doctor mentioned that this marker is normally seen in pregnant women & should be very close to zero in health men.However, the markers can go a lot hight than that:
http://tcrc.acor.org/staging.html

Looking near the bottom of that page, hCG can go over 50,000 mIU/mL in stage three patients & AFP can go over 10,000 ng/mL.

As I said, I will get the results of the most recent test on Monday the 19th, if they are back to normal I may be OK with just surveillance, although my urologist thinks I will need some chemo due to the embryonal cells.

Dave

terato's picture
terato
Posts: 384
Joined: Apr 2002

Dave,

If your oncologist is talking "surveillance" v. "chemo", it does not sound nearly as critical as you may have initially feared? I e-mailed Doug at TCRC concerning elevated AFP and he e-mailed back saying that he knew a number of guys with elevated AFPs and no evidence of tumor formation. Cisplatin alone can cause liver damage, which can also result in higher AFP markers, not to mention possible cardiac problems.

I will share Doug's message with you:

"I don't think anyone really know what is going on in this case. I know of around 5 other guys with a similar situation. It is prevalent enough that the experts would not even consider treating you unless the markers moved in a linear trend for a number of months and/or the AFP went over 25. If I had to guess, I'd say it is from some small liver damage or something like that.

I do not think you should worry about this at all, though I do think that you should continue to measure it yearly.

I don't know too many people from back in the two year days. Do you still feel side effects from the treatment? Do you know what kinds of things your doctors should be watching for as a result of that treatment (mostly cardiac issues)?"

I told Doug how much I appreciated both his response and the TCRC website.

Dave, I appreciate your sharing your situation with me and I feel comfortable doing likewise.

I am praying for your continued health and peace of mind.

Rick

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

First, I have yet to see an oncologist, so far I have only seen my urologist.

Second, I'm the one talking about surveillance, not my urologist. So far the CT scan shows nothing significant, if the markers have dropped since my surgery, I see no reason to have chemo. I am not a doctor, but the odds of surviving are about the same with surveillance & chemo, based on the TCRC info. I am more afraid of the chemo than I am of waiting. If the markers are still elevated, then there is no choice but chemo.

Third, once the CT scan came in, I haven't been too concerned. If my body was riddled with cancer, that would probably have shown up. Again, gotta wait until the next appt to find out.

Now, Are you asking me if I have side effects from my treatment 35 years ago or from my recent orchiectomy?

The only side effect from my treatment 35 years ago is a big scar & retrograde ejaculation. There was no chemo or radiation used on me then.

Dave

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

First, I have yet to see an oncologist, so far I have only seen my urologist.

Second, I'm the one talking about surveillance, not my urologist. So far the CT scan shows nothing significant, if the markers have dropped since my surgery, I see no reason to have chemo. I am not a doctor, but the odds of surviving with a negative CT & dropped hCG seem about the same with surveillance & chemo, based on the TCRC info. I am more afraid of the chemo than I am of waiting. If the markers are still elevated, then there is no choice but chemo.

Third, once the CT scan came in, I haven't been too concerned. If my body was riddled with cancer, that would probably have shown up ( at least I think it would have). Again, gotta wait until the next appt to find out more, the waiting is almost the worst part of this.

As far as your elevated AFP markers check out the TCRC dictionary page:
http://tcrc.acor.org/dictionary.html
Under Alpha-fetoprotein it says (in part):
"increased levels of AFP are also found in patients with liver diseases, such as cirrhosis, acute and chronic hepatitis and hepatic necrosis."

Not sure if that bit of info is comforting, but it is probably consistent with the liver damage theory.

Dave

terato's picture
terato
Posts: 384
Joined: Apr 2002

Dave,

Compound that with one's average beer consumption, especially during college years, and/or the possible prescription of statins, and you have a life-time of liver stress. Fluctuating AFPs are even more confounding, which is what I've experienced for nearly three decades.

If the CT is negative, it might mean that any renewed tumor activity is too small to be identified by CT. If the oncologist is really concerned, he may order a PET scan, which generally finds what other scans miss. PET scans are very expensive and oncologists only order them when they really believe there is something to be found.

I hear ya about the waiting, sometimes it's the worst part of cancer, and that's saying something!

Rick

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

Well wait is all I can do at this point, so that's what I'm doing....

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

Well the hCG marker went to zero, the AFPC marker is "high normal". The recommendation is chemo, just because they assume there are a few cells out in the wild, even though the tests don't show any. So I get to wait again to see the oncologist to see what is in store next.

Dave

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

Well the hCG marker went to zero, the AFP marker is "high normal". The recommendation is chemo, just because they assume there are a few cells out in the wild, even though the tests don't show any. So I get to wait again to see the oncologist to see what is in store next.

Dave

terato's picture
terato
Posts: 384
Joined: Apr 2002

Dave,

I can't speak for your specific situation or your oncologist, but my AFP has been consistently "high normal" for years and my oncologist never recommended resuming chemo, since Dr. Nicholas Vogelszang informed him of the fact that a number of patients have higher AFP markers with no evidence of exacerbation of cancer. As long as it is nowhere near "25.0", there should be no cancer.

Here is Dr. Vogelszang's web info:

http://www.usoncology.com/portal/page/portal/PubWeb/8NewsRoom/02NewsReleases/70F3609E00DD40C7E0440003BADBF04B

Again, I wish you good luck and remain hopeful for your cancer-free outcome.

Rick

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

That is triggering the decision to go to chemo, it is in a normal range, just at the high end of normal. I hope the oncologist will be able to better fill in the blanks next MON.

Dave

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

Well, finally saw the oncologist. He is running more tests before finalizing the stage. It seems my hCG marker has dropped to near zero, but the AFP has actually increased a bit, still normal, but barely. If it has gone up again in the most recent test it would be a bad sign.

In any event the pathology report showed some evidence of the cells spreading into the lymph ducts, so looks like it'll be chemo for me. I'm going in for a PET scan on Fri, which he says will give a more accurate indication if there is any significant spread.

Dave

terato's picture
terato
Posts: 384
Joined: Apr 2002

Everyone I ever spoke with about a "gold standard" of diagnostic tests, without exception, has mentioned the PET scan, when CT and MRI scans have not provided definitive answers. If the PET scan reveals nothing significant, treatments can be minimized. I hope this is what transpires. In any event, thanks for keeping us posted.

Courage and Peace of Mind!

Rick

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

PET results say I'm "very likely to have a metastatic node in the left external iliac system". So I'm getting three course of BEP starting Mon.

It is what it is, I guess.

Dave

terato's picture
terato
Posts: 384
Joined: Apr 2002

it has got to be very very small and, therefore, easy to beat. I will be praying for you.

Courage and Peace of Mind!

Rick

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

Is what the report says. It lit up in the PET scan so it's highly likely to be cancer & that puts me at stage 2. Still, considering the size & extent of the cancers that have been successfully treated with these drugs, this tumor has no chance.

Dave

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network