Testicular cancer with no markers

[AaronK]

Hey everybody i just want to say first of all this is a great community. Its given me heaps of info using the search tool and seeing peoples experiences. Thanks

Well onto my situation i got my pathology results yesterday and was told i got 100% Embryonal Carcinoma. Now during all of this ive had normal markers. Weird. I went on the search tool and found a few people in my situation with no markers too though.

Thing is my abdominal CT scan found some enlarged lymph nodes with signs of spread, so i have to start on BEP and then it will be decided whether i need RPLND or not.

Now im wondering as i have no markers at all (AFP=3 HCG=2) does this make me have a very very good chance of cure?

And also as my markers are perfectly fine what do you think are the consequences if i decided against chemotherapy even though i have retroperitoneal spread?

Aaron

[Martin]

Hi Aaron,

it used to be that doctors would opt for the RPLND before Chemo, but in recent years it appears that has changed and they tend to do it vice versa now. But you will have to do one or the other ... or maybe both, regardless of what comes first.

Embryonal Carcinoma can sometimes skip the normal path and go right to organs, lungs, etc. - Chemo being a systemic treatment will likely find it and kill it wherever it may have spread.
I think there is a good chance that you may not need the RPLND if the chemotherapy did it's job well.

On the other hand, if it is all contained in the lymphnodes, the RPLND could be enough to remove all the cancerous cells and you would still have the chemo as back-up, just in case there was a spread.

- Martin

[Scott]

Welcome, Aaron. How enlarged did the lymph nodes appear to be in your CT scan?

[AaronK]

Hey Scott, i dont really know how enlarged they are. All i got told is there are a few nodes which are not normal size so i will have to start chemo soon.
Ill ask next time i see him though.

[AaronK]

Has anyone got any idea on what is mostly the normal size of a lymph node? So i could i have a better idea.

Are all lymph nodes the same size for everyone or does it differ from each person on their size?

[Scott]

And also as my markers are perfectly fine what do you think are the consequences if i decided against chemotherapy even though i have retroperitoneal spread?

If there truly is spread to the retroperitoneal lymph nodes, you need more treatment now, and although I don't know all the details of your case, I'm ready to believe that chemotherapy is your best option.

[Mom]

Aaron, if you have enlarged lymph nodes with 100% EC you are going to need the chemo. My son did not need the RPLND after his chemo. Depending upon your age and situation, you should think about banking sperm before you start the chemo. They waited two weeks before starting chemo so that my son could bank three vials of sperm. It will be okay. Dianne

[Karen]

There is a range. Retroperitoneal lymph node ares condidered within normal limits up to 11mm. However, we were told by the radiation oncologist and urologist that they are generally not even visualized on a CAT, so when they are visualized they are noted.

[Jens]

Hi Aaron.

I was in the exact same situation 1 year ago.
No markers, 100% EC and enlarged RP-nodes (20-30 mm).
I had biopsies taken from the nodes (thin needle aspiration) and it showed cancer.
3xBEP cured me and it will cure you too.

Best wishes
Jens

[AaronK]

Ah cool Jens, its good to hear someone in the exact same situation. Im ready to go on BEP and dont really mind going on it (i just put the question of me not doing it, out there). I know its going to be tough with all the side affects but thats the way it is. I just want to hurry up and get rid of this b1tch!

So Jens your nodes were about 20mm first. Did they all end up going to normal after chemo? Do you know what size to?

[Jens]

Hi again.

3xBEP was really not that bad for me. It was a very mental thing, I was lucky to have support and knowledge that enabled me to be so very positive towards the treatment.
I knew I needed it, I knew it was (IS!!!) effective, so I was just ready for it.

Know that it's not about puking and stuff. It's about beeing tired, nausious and not really hungry... Things sounding differently and nothing is really tasty. Strange "tingling" in fingers and feet... tommy acting up!

But all in all, not that bad.

After chemo I was "All Clear" (that one was for you Dadmo!)
and didn't need any more treatment. Some may need to get residual masses removed surgically (mature teratoma is the correct frase) but not me. My nodes were back to less than 10 mm. And they still are!!!

Nothing is for free in this life - nor is chemo.
Here is an article that may give you some insight.

Today I'm living a normal life, apart from my tendency to frequent this website.....

Best wishes
Jens

[AaronK]

Thanks

Im actually looking forward to chemo. Looking forward in the sense that it will kill everything and i just want to start ASAP. Typing now knowing this crap is inside me horrifies me. Though my biggest fear through all of this would be going through high dose chemo. Thats what im worried about and hope wont happen.

Im kinda taking a guess that chemo is like a real real bad fever? Sounds like chemo is in the bounds of that.

[greatgroundling]

having been lucky enough to not require chemo, i can't say what the side effects are like......

on a lighter note, your attitude is excellent!!! its exactly what you need to beat this. ("attitude is everything")

i understand what you mean about the feeling of having cancer inside you. (in fact for weeks i was telling my girlfriend i didnt feel good and i felt like "there was something bad in me".)

i commend you and your attitude! and we will be here to support you throughout the process.

good luck and keep us up to date!

[Apache]

typical RP lymph nodes average about 6-7mm and "normally" they shouldn't appear on a CT. however, there are cases where infection (doubtful), scarring (possible), or just having a larger lymph node do exist.

[petep]

hi aaron,

just finished my chemo...my markers were normal pre orchiectomy...I went on surveillance after surgery...then my b-hcg went to 4.6 and I showed an enlarged node....now that is a low b hcg, but still considered slightly elevated...

halfway thru the chemo all markers went to normal and I just had my CT scan and the enlarged node is gone...so back on surveillance.

I think the tendency with embryonal is chemo - I flew to indiana and in my siutation that is what einhorn suggested, if it were him. I went to the univ. of Miami for treatment with a great doc - Benedetto - who einhorn had praise for...he also suggested the chemo when the markers went up and node was enlarged.

From the staging system and the risk categories, there are several variables...but from what I recall, a low b-hcg (under 1,000), combined with a couple other factors (such as few lower lymph enlarged nodes) puts you in the "good" risk pool. As markers rise and the affected areas are higher up in your abdomen, or your lungs of course, the risk factors increase.