New to this Forum, just got diagnosed with TC..

[Krehan]

First of all, I wanted to thank all the people of this forum, this forum helped me A LOT emotionally, I feeled much more secure when I read all your topics.

A brief Intro of Myself, Im not British nor American (thought I was borned in Usa, i settled in Argentina), my brother lives in USA Ca Arkadia. Im 25 years old, and im a Bussiness Administration Student.

About 29 days ago, I felt a pain on my left friend, it wasnt a big deal, just a bit of pain, but when I touched it, I noticed a little lump\bump in it. Probably being a guy and a bit stupid, I left it for about...5 days, but after that I was freaking myself enough to see my oncologist, he adviced me to take the tumor marker tests, and chest X rays.
5 days later:
My HCG gaved 79, AFP 4,36.
My chest scan was clear.

By that point, my doc adviced me to do a incisionary exploration, to see if it really was TC, which was schedulled on wendsday (4 days after the tumor markers result). After the I\O i was about 1 and a half week for recuperation, and again tumor marker tests and pathology results (again 5 days of frustrating wait),

the results were quite good :
Afp 3,56
HCG 2,
eritrosedimentation 3 in 1 hour
Chest scan : clear.

Pathology result: I have Embryonal carcinoma (predominant) and a few neoplasic trofoblast cells (i dont know if i spelled it correctly), which are chorioncarcinoma, ok..that was when i got scared..chorioncarcinoma is really bad, isnt it? it spreads via blood and all that stuff.

Altough the pathology result showned that it was still confined in the testicle (sperm duct still intact, without injury, etc)

I still need to wait 3 days for my TAC scan (and another 48 horus for the result).

[Scott]

Welcome! Glad to hear you caught it early and things are looking good. Let us know what you learn from the CT scan.

[Krehan]

Thanks a lot for the quick reply Scott, I know my case is insignificant compared to more dramatic cases, but im still feeling uneasy, this feeling grew even more when i found out it was chorio.
Even in small proportions, and after the I\O was done, if it is already spread at my abdomen, what kind of treatment im gonna have? chemo, rlpnd, because this is too new to me and im really lost..

[Aegean]

Hola!

I was wondering if you were given the exact percentages of EC and Chorio. You are right in that Chorio can be a nasty bugger, but you seem to have caught it early as your markers have gone to normal. Treatment options will depend on if the CT Scan fins any enlarge nodes or not.

edit: most likely chemo would be the course of action if enlarged nodes.

[Scott]

Kreehan, no cancer case is insignificant!

Pure choriocarcinoma is rare but can be fast-moving. However, read Dr. Craig Nichols' comment on this page of the Testicular Cancer Resource Center: "...choriocarcinoma in and of itself does not portend a particularly poor prognosis, and it is much more dependent on the level of the HCG or degree of spread of the tumor to determine the prognosis."

If there is metastasis, chances are you'll have chemotherapy, 3xBEP or 4xBEP, and chances are it will cure you. But there's a good chance you're cured already. Hang in there while we wait for more information next week.

[Krehan]

Thanks a lot,both of you.

Aeegan, They didnt gave me the percentages, in the paper it just said predominant of embryonal carcinoma with few places of hemorrhage within the testicle. (which i suppose thats the choriocarcinoma type), epididymis is infected but sperm cord is intact. Oh and you speak spanish ? hehe, I already spent like 15 years in Argentina, my spanish is not very fluent yet, but its good.

Scott, Thanks a lot for the link, Im going to check it right now and..Yea, from what I read, Pure chorio is really nasty and i couldnt find any concrete answer about how it is treated or whatever cure ratio, thought what i have is not Pure chorio right?And what is BEP? (sry to bugg with all these questions, but my knowledge about this is practically 0)



Too bad im at Argentina, and none of you guys knows good centers of expertise..i kinda feel lost and i dont know where to go (after this).

[Scott]

Originally Posted by Krehan

...what i have is not Pure chorio right? And what is BEP?

Right, you have a mix of embryonal carcinoma and choriocarcinoma.

BEP = Bleomycin, Etoposide, and Cisplatin

[Krehan]

Great, that article was really helpful.

I'll post my TAC result next week.


And again, thanks a lot for the quick replys and the info.

[Aegean]

Nope, don't speak Spanish (except being able to order a beer).

I do not know if anyone has any info on cancer centers in Argentina, but I am sure someone else will chime in soon.

[RyanSeattle]

Originally Posted by Krehan

First of all, I wanted to thank all the people of this forum, this forum helped me A LOT emotionally, I feeled much more secure when I read all your topics.

A brief Intro of Myself, Im not British nor American (thought I was borned in Usa, i settled in Argentina), my brother lives in USA Ca Arkadia. Im 25 years old, and im a Bussiness Administration Student.

About 29 days ago, I felt a pain on my left friend, it wasnt a big deal, just a bit of pain, but when I touched it, I noticed a little lump\bump in it. Probably being a guy and a bit stupid, I left it for about...5 days, but after that I was freaking myself enough to see my oncologist, he adviced me to take the tumor marker tests, and chest X rays.
5 days later:
My HCG gaved 79, AFP 4,36.
My chest scan was clear.

By that point, my doc adviced me to do a incisionary exploration, to see if it really was TC, which was schedulled on wendsday (4 days after the tumor markers result). After the I\O i was about 1 and a half week for recuperation, and again tumor marker tests and pathology results (again 5 days of frustrating wait),

the results were quite good :
Afp 3,56
HCG 2,
eritrosedimentation 3 in 1 hour
Chest scan : clear.

Pathology result: I have Embryonal carcinoma (predominant) and a few neoplasic trofoblast cells (i dont know if i spelled it correctly), which are chorioncarcinoma, ok..that was when i got scared..chorioncarcinoma is really bad, isnt it? it spreads via blood and all that stuff.

Altough the pathology result showned that it was still confined in the testicle (sperm duct still intact, without injury, etc)

I still need to wait 3 days for my TAC scan (and another 48 horus for the result).

Krehan,

Hello and welcome I guess. It's really overwhelming when your first diagnosed. Lots of new terms. You have most likely caught this early and if not you still have a very high cure rate. This forum can be very useful and a safety net to make sure your Doctors are following the correct course for treatment. Did your tumor have vascular invasion? Your tumor is aggressive but will be sensitive to chemo. The problem with chorio and EC is that it can grow quickly. The CT scan which you are scheduled for will determine whether you are stage 1,2, or 3. Since you had a clear chest scan and your tumor markers are low I am guessing you are not stage 3. Please keep us posted on your results and treatment. Also my wife is originally from Lima, Peru.

[Fed]

¡Hola y bienvenido!

Right now you are doing all the right things. It is important to ensure that your markers keep going down. If you have further details on the pathology report, pass them on (feel free to write them in Spanish; I can translate ). Those details, along with the results from the abdominal/pelvic CT scans and chest X-rays, will determine what comes next. Either way, treatment for the vast majority of cases of TC is fairly standard. If it helps your search, you should look for a medical oncologist that specializes in genitourinary oncology. If you live near a big city, chances are there is going to be a cancer center around with a physician should be able to help you out.

Aquí estamos para servirte.

[Krehan]

RyanSeattle. Im not quite sure, if i have vascular invasion (but i guess i have it), from what I've read, there are places with hemorraghes and few spots with necrosis hemorrhage. Also there are numerous intravasculars neoplasic embolias (or whatever, i dont knowhow to translate this ).
From what i can see, the results arent thaat bad, but im still feeling nervous, I just cant feel anyother way till i get my TAC scan..


Fed: The pathology result said this,

Se observan escasos grupos de celulas de aspecto trofoblastico, se observan focos de necrosis hemorragica.
Se halla remanente de parenquima testicular con tubulos atroficos, comprimidos. Se encuentran tambien numerosas embolias neoplasicas intravasculares.

Las estructuras paratesticulares, albugiena y epididimo presentra infiltracion focal neoplasiaca.

El cordo espermatico se encuentra libre de lesion.
El borde de seccion se halla libre de lesion.

muchas gracias por traducirlo, amigo

[Fed]

It won't be verbatim, but it will be close enough.

Originally Posted by Krehan

Se observan escasos grupos de celulas de aspecto trofoblastico, se observan focos de necrosis hemorragica.
Se halla remanente de parenquima testicular con tubulos atroficos, comprimidos. Se encuentran tambien numerosas embolias neoplasicas intravasculares.

There are a few trophoblasts (one of the two types of choriocarcinoma components, the other being syncytiotrophoblasts) with focal bleeding --pretty normal for chorio. The testicular tissue is infiltrated and atrophied; there is vascular damage.

Originally Posted by Krehan

Las estructuras paratesticulares, albugiena y epididimo presentra infiltracion focal neoplasiaca.

There is invasion all the way to the epididymis; this would make you pT2 according to the staging guidelines, meaning stage I-B non-seminoma pending your upcoming CT scan.

Originally Posted by Krehan

El cordo espermatico se encuentra libre de lesion.
El borde de seccion se halla libre de lesion.

Cord and margins are free of tumor.

As it stands, you right now have about a 50-50 shot of having been cured by the surgery. You have three options: surveillance (wait and see, but you should be getting bloodwork every 6-8 weeks and scans every 2-3 months), adjuvant chemotherapy (1 or 2 cycles of BEP), or RPLND surgery (probably not the best choice given you tumor composition, though it could be useful for further staging).

[Krehan]

Thank you so much for the translation Fed, you gaved me a very clear and complete view of my situation. You are very skilled in this

All what is left now, is to wait for the TAC.

Im really happy to about finding this forum, im feeling that i have a safe place where to ask questions and a really warm comunity

[Krehan]

I finally got my TAC results, and they were all CLEAR! abdominal, pelvic , liver, kidneys, all normal! whew.

My next appointment with my oncologist is next thursday, now what should I expect? surveillance, or do i still need to undergo adjuvant chemoterapy?



krehan.

[Scott]

Originally Posted by Krehan

My next appointment with my oncologist is next thursday, now what should I expect? surveillance, or do i still need to undergo adjuvant chemoterapy?

With normal markers and a clear CT scan, you should have a choice.

[JNW]

Congrats Krehan. I'm so glad your scan was clear. Good for you for trusting your instincts and seeing a dr. before it could have possibly spread.

Jeri

[Krehan]

Thanks a lot for the quick replys, and I want to thank Fed specially, he did a wonderful translation job that kept my mind at ease for several days.


I will post an update next week, if theres any new changes.

[Fed]

I am very happy to have read about your scan results. As Scott said, you have a choice. If you can handle doing all of the frequent follow-ups (as well as the possible psychological consequences of "waiting and seeing"), then surveillance is a good choice for you. If you do elect surveillance and you relapse, then you would likely have to do the whole course of chemotherapy for good risk disease (3xBEP or 4xEP). The alternative is to do 2xBEP now as adjuvant treatment. You would have to deal with the physical effects of chemotherapy, but it would be less chemo than you would get if you had evidence of metastases.

In the end, it will boil down to whatever makes you feel comfortable. If you have other questions or concerns, just ask.

[Krehan]

Well, I've read that patients like me (with vascular invasion) are ppl that are considered to have "high risk of relapsing" like 50% chance for relapse in the short run, is that true?

Anyway, Im pretty confident that I can keep up with a surveillance rutine, but if my odds of relapse are high, then personally I would prefer adjuvant chemo.

And last 2 question,
1)After I had adjuvant chemo and relapse AGAIN (yea, call me paranoid) then , it is a much complicated case, right?.

2)Relapse means, that metastasis forms in my distant organs, or i have a good chance of getting it for my right buddy too(that would be too much for me..)

And thanks for reading my whimpers again.


krehan

[Kat]

Originally Posted by Krehan

Well, I've read that patients like me (with vascular invasion) are ppl that are considered to have "high risk of relapsing" like 50% chance for relapse in the short run, is that true?

Anyway, Im pretty confident that I can keep up with a surveillance rutine, but if my odds of relapse are high, then personally I would prefer adjuvant chemo.

And last 2 question,
1)After I had adjuvant chemo and relapse AGAIN (yea, call me paranoid) then , it is a much complicated case, right?.

2)Relapse means, that metastasis forms in my distant organs, or i have a good chance of getting it for my right buddy too(that would be too much for me..)

And thanks for reading my whimpers again.


krehan

Yes, you probably have about a 50/50 chance of being cured RIGHT NOW. And a 50/50 chance of requiring further treatment.

If you have adjuvant chemo now, and relapse later, it becomes a bit more complicated, but that's really something you shouldn't drive yourself crazy about right now. There's just no way to anticipate in what way you possibly could relapse. If you relapsed with teratoma only, for instance, you could be cured by surgery alone, without more chemo. There's just no way to plan for that very unlikely outcome, so you should try to focus on your plan for right now, and not make yourself crazy about the other stuff.

It is VERY VERY unlikely to get TC in your remaining amigo. Yes, it technically can happen, but, again, very, very unlikely. I think it's not really considered a "relapse" if you get TC in your remaining buddy---I think it's considered new disease---which is why it's so incredibly unlikely. TC does not have a tendency to jump from one amigo to the other.

Hope this helps....just try to focus on your plan for NOW. I know that it's hard to not freak out about the what-ifs, but just try to make a plan, stick to your plan, and go from there. You didn't plan on getting cancer in the first place, and you're doing okay, so there's no sense in planning on getting cancer again, right? ;-)

Buena suerte!

[mil]

hey, another thing is to remember that after you have the adjuvant chemo (2xBEP), you still have to do "surveillance" - blood work every 3months and CT scans every 6 months for the first two years, so, even if you relapse after adjuvant (which is unlikely!) they will catch it early, and often can take it out with surgery while it's still small, or there is also TIP chemo which they can use. sometimes after adjuvant people think they are "cured" and don't do the surveillance, and then if they get a relapse by the time they find it, it is big, and very difficult to deal with. but if you do adjuvant, and do the proper follow-up surveillance schedule, they will catch a relapse early. BUT YOU PROBABLY WON'T HAVE A RELAPSE ANYWAY!! as kat said, i wouldn't anticipate a relapse or it will just drive you crazy with fear.

but if this really is something that really worries you a lot, then maybe choosing adjuvant chemo is not the best for you. maybe surveillance is, and then if the cancer comes back you can just get 3xBEP.

it can be a tough decision, but there's no wrong decision so that's the good thing. it's whatever feels right for you! keep us updated, good luck, ciao!

[Krehan]

Thanks, both of you.

And I think you are right kat, theres nothing I gain right now doing uneccesary speculations, it will just freak me out even more, but right now im kinda paranoic..every little pain or cough, I relate it with cancer.

I guess, I'll start searching for a good expertise center, just in case. But just as a backup plan if I ever relapse, so in that case i can act quickly and all that stuff.

And about the choice..I think, im going to choose surveillance, i think i can keep up with the routine without problem, just hope that im in that 50% that is already out

And i wont be tired of repeating this: Thanks a lot, all of you who posted, it really helped me.

I will update again, if there is anything new.



Krehan

[dadmo]

Krehan:
Just remember that if you do relapse your chances for a cure are just as good as if you were treated now, but with a bit more chemo. I always like the surveillance route when reasonable, it save the big guns for when you actually have a target. Just don't skip the follow-ups, you'd be surprised how many guys do.

[Krehan]

Yea, I thought the same. Thats why, I think I'll choose surveillance, so if I relapse, then i bring the "real stuff" to fight it.

Another thing i noticed, is that my energy level is kinda low right now..I now feel more tired and tend to sleep more, even if i sleep early. This has something to do with my tetosterone lv? should I ask for a tetosterone test or is it just temporary..?



krehan

[Kat]

Poor Krehan! It's probably not your testoterone---like you said, it's your paranoia. The anxiety of all this stuff really beats you down, man. Of course it's important to let your doctor know that you are tired and not sleeping well, and if you want to get your hormones checked, go for it. But, most likely, you need to relax a bit. I know that's easier said than done, and anyone who told me to relax through all this stuff, I could have just as easily punched them in the face. The more people who told me to relax, the more people that I wanted to punch in the face.
But any little thing that you can do for yourself that brings you comfort or relaxation, give it a shot. Take a nap, do some yoga, go for a walk through a pretty area, have a beer. For me, a nap always makes everything better!
Sending you calming thoughts!

[Krehan]

Yea, I feel like an idiot now lol, everything scares me.
But I guess, i'll just need to get used to this and move foward! Thanks a lot kat, for the calming thoughts, guess I need to gather my remaining tetosterone and move foward



krehan

[RyanSeattle]

Krehan,
Your not an idiot and its very possible that the orchiectomy could have lowered you testosterone levels. The only way to really know is to have your testosterone levels checked. I started to have symptoms of fatigue and a hard time concentrating.

[Kat]

Krehan! You're not an idiot! And being a little paranoid isn't the worst thing in the world. If you feel like something in your body is not quite right, you should always tell your doctor about it. Sometimes it's nothing, and sometimes it's important because it's something your doctor wouldn't have thought of, or something that your doctor wouldn't have noticed if you didn't speak up about it.
The mantra on here is always, "it's probably nothing, but TELL YOUR DOCTOR!!!" :-)
It's all gonna be okay very soon!!
:-)

[Krehan]

thanks both of you for your replys, yea these mind games are kinda annoying, but I guess i have to get used to it, and if I ever feel doubtful, i will certainly go to the doc

[Fed]

Dude, the mental issues are, unfortunately, part of the trials and tribulations with cancer. A lot of doctors focus on the physical aspects of the disease, but there is a mental component that you cannot ignore. I will tell you that it gets better with time, but the first few months can be kinda rough psychologically speaking. What helped me during those times was coming to the realization that I was not alone. There will be meltdowns, but you will be all the more better for it in the long run. ¡Ánimo amigo!

[HouTex]

Fed says it all very succinctly. I had a number of meltdowns...

[Krehan]

Well, today I went with the oncologist. And he told me to do another tumor marker test, and a Chest TAC, not a whole scan, but just the chest.

Now, my last chest x ray camed out clear (28 of may), so i was wondering why he needed me to take another TAC? (when i asked him, he just told me that he wanted to be sure, but dindt gave me details) for chorio\embryo, is there the risk of spreading directly to the lungs, jumping the abdominal region?.

I dont really feel comfortable with this doc, when I asked him if he knew a good chemoterapy\cancer treating center, he just said : "We do chemoterapy here" (And i was like wow..here!? I mean, he was in an office and it didnt seemed well equipped..), but until now, he seems to do the things right..so i dont know if change for another doc or what.


krehan.

pd: And yea, now I dont have anxiety attacks, but I still feel unsecure and my doctors arent helping much either lol.

Gracias por los animos Fed and houston (thanks )

[mahalomom]

Originally Posted by Krehan

Well, today I went with the oncologist. And he told me to do another tumor marker test, and a Chest TAC, not a whole scan, but just the chest.

Now, my last chest x ray camed out clear (28 of may), so i was wondering why he needed me to take another TAC? (when i asked him, he just told me that he wanted to be sure, but dindt gave me details) for chorio\embryo, is there the risk of spreading directly to the lungs, jumping the abdominal region?.

I dont really feel comfortable with this doc, when I asked him if he knew a good chemoterapy\cancer treating center, he just said : "We do chemoterapy here" (And i was like wow..here!? I mean, he was in an office and it didnt seemed well equipped..), but until now, he seems to do the things right..so i dont know if change for another doc or what.

Hello Krehan,

I would ask my doc again, why he wants you to have another scan so you can gain a better understanding of his reasoning. It may just being for survellience purposes. Now is the time to ask ask ask. You have to be your own advocate. Sit in his office for hours asking questions if you have to. Some docs are very good but don't have the best bedside manner and others are just bad. Only you can decide if you are comfortable with this doc or not.

I've also read your posts about having anxiety over all of this. Don't be too hard on yourself. This is scary. We've all been scared and the waiting only feeds the fear. Even after 2 years when my son get his monthly blood results or x-ray results, I'm still on pins and needles. It get a little easier with time.

Mary Ann

[Krehan]

Sry for the long reply Mary Ann, I was really sick this week, with high fever, nausea and nosebleed (nosebleed happened during the last day), so that kinda kept me away from the pc.

This tuesday i get my 3rd blood work, im confident that it will come out normal (hopefully) and, yes, I will ask all the questions to my doc.


Krehan

[Krehan]

Just a quick update, today's tumor marker tests were normal
Afp 2,5
hcg 0 (yay).
Ldh 243. (normal is between 250 to 400 something)

I still need to do another CT scan, but for saturday , at the same hour that Argentina plays against Germany (damn!).
Still got those random pains, but I guess those are effects of my anxiety\pressure

The only thing i dont understand, is of my last nosebleed..taking aspirins can cause that? cuz it was kinda scary lol..I just forgot to ask that to the doc last time i saw him..hurray for my jelly fish memory..


Hope everyone is doing fine, I'll update if anything goes out of normal.


Krehan

[Aegean]

Taking aspirins does thin the blood, so if you burst a vessel... you'll bleed more. Fortunately, most of the time, a nose bleed is a nose bleed is a nose bleed.

[Krehan]

Thanks aegan, Guess nex time I wont take that much aspirins when im sick