My Story

[rusty009]

Thanks fellas. Javier, I have 100% embryonal carc nonseminoma. Looks like I'm going to get the RPLND. I went to the philadelphia-are expert TC oncologist at UPenn yesterday. He said the PET scan was useless in my case and wasn't necessary or helpful. (my suburban urologist recommended it) My markers are currently normal... AFP at 6.5, HCG is below 2.

He suggests RPLND instead of chemo because my markers suggest I'm clear. If my markers were elevated, he would recommend chemo instead at this point.

He suggests RPLND instead of surveillance because of my abdomen CT showing suspicious enlarged nodes (several are .8 thru 2cm nodes) ...and surveillance in my case would be "just sitting around waiting for a reoccurrence".

Also mentioned was the chance of teratoma, which chemo doesn't affect.

[dadmo]

It's great that your PET scan didn't show any enlargement of the lymph nodes. The lung spots are a problem because of the embryonal component. If they keep a close watch on everthing it is possible that you can avoid chemo. My son has lung spot which have been unchange both before and after chemo, it was determined that it is simple residual thymus which exhibits itself in about 10% of the population. He unfortunatly had swollen lymph nodes and an embryonal component to his cancer which sent him directly to chemo. You might just get lucky here but be ready.

[Javier Rodrigue]

Embryonal no-seminoma? What kind?

What was your complete diagnose? Carcinoma? CorioCarcinoma? Your AFP is still a little bite high, If the pet didnt lights up nothing abnormal (thats good news). I was almost in the same situation and my oncologist decided to give me 3 rounds of chemeo BEP, to be sure. The pet is not a 100% sure on TC. Sounds like you will be great... Wich was your highest marker AFP or BHCG?

Javier
TCx2
L and R I/0
BEPx2
EIpx4
Surveillance

[Larry B.]

Not sure

Rusty,

Wecome to the forum, sorry it has to be the way it is. I see that your AFP has been falling at the half life rate that it should. That is a great sign. I am not so sure about the .8-2cm nodes however. I have been told that anything over 2cm would be an indication of a tumor. Not trying to scare you but you need to be prepared. It could be anything. The fact that your markers are coming down is good. I know how it feels to have to wait and see. Hang in there and let us know what the oncologist has to say.

[rusty009]

Your replies are all much appreciated. Thank you each! Since last week, I've received these reports:

1) PET Scan says there is nothing abnormal, and no signs of any malignancy!

2) Lung CT says minimal infiltration of the anterior. Two small subcentimeter left upper lobe pulminary nodules for which followup exam in 3-6 months is advised.

3) AFP is now at 16, HCG is now below 2.

My urologist hesitated from giving me any type of diagnosis or comfort. He says it's out of his expertise, and that I am better off waiting the 3 more days until my first appointment with the test-oncologist.

Do my results make sense to anyone? What do they mean to you? I'm somewhat excited by the blood markers. I'm a bit confused as to my initial pelvic CT saying several nodes .8 - 2cm, and now the PET saying there's nothing abnormal in me.

[John Brooks]

Been there, and trust me, missing work is the least of your problems, as you will see. You will more than likely reorganise your priorities. Dont worry, the work will be waiting for you

[dadmo]

Rusty:
It's hard to say how much work you will miss but each round of chemo is a week that you will certainly be home. You will have two weeks between cycles and maybe you can work then, my son was able to work but it was office work. This cycle will be repeated 3-4 times.

[Scott]

It won't be fun, but you will get through it and go on with life! I'd expect to miss somewhere between six weeks and four months of work, though that's not a given, just an estimate.

[amorgan74]

Howdy!

Hey there Rusty, Glad you found this forum under the circumstances. You are asking about work and I can tell you that what Don said is pretty accurate and just wanted to add one thing. You've probably read some info on the nausea that happens for some people during chemo and hopefully this won't be too bad for you but the fatigue seems to get everyone. I think as your body is trying to adjust to all of the medicine and fighting the cancer off it just gets tired. I am sure there will be more questions to come and please post them because I guarantee there's at least one other person who's either been there or knows the answer. Take treatment one day at a time and let us know how it is going. April

[Don]

Welcome Rusty!!!!!

How much work your going to miss really depends upon what the pathology report says and what your doctors prescribe as treatment...Some people can work through some of their treatments and some people can't ..It varies from person to person... I also depends on what you do for work..If your in an office job you may be able to continue work as long as your blood cell counts don't go to low!!! if you have a labor intensive job the likelyhood of you working through chemo treatment is slim..... Chemo--- It sucks!!!! but it is a means to an end and thats what you have to keep telling yourself everyday!!!!!!RPLND-- Is rough the first few days but gets better everyday after that.. Many survivors here have returned to light duty 2-3 weeks after RPLND and normal work 4-6 weeks after --again depending on what you do for work.. seeing your going to travel to U Penn it would probably be in your best intrest to consult with Indiana University after you get your results--Just to confirm the diagnosis and treatment plans sugggested..... Best of luck and keep us posted!!!! DON

[rusty009]

Hey all, new member! 30 year old white male. Last week I was diagnosed with Stage IIa embryonal nonseminoma.

Back in December I noticed a painful swelling, went to urologist, and was told "You have orchitis." He gives me an antibiotic, and I go home. Over a month passes, no improvement, return to doc. Now he suggests ultrasound and bloodwork. Ultrasound shows large mass in right testicle, bloodwork results were at 117 and 134. I had the right orchiectomy 6 weeks after my first visit to urologist. Mass removed was 10cm x 6cm x 4cm, was like carrying around a grapefruit between my legs! The pelvic CT scan shows nodes between .8 and 2.0cm.

Right now, I'm waiting on lung CT results, post-surgery bloodwork, and PET results.

I've got an appt with the "expert" testicluar oncologist at U Penn next week. Not looking forward to chemo and/or RPLND. Please tell me it won't be too bad. How much work can I expect to miss? Did anyone have a similiar diagnosis?

Thanks in advance!