Yikes...25 year old man here with a tumor..

BrendanJohn said:

Thanks for the relplies
Thanks for the replies guys. Dave, you are dead-on about my reaction after surgery. It was too much to process at the time. Now that a few days have passed, I am comfortable with the idea that this portion of my body (my testicle) was sick, and had the potential to make the rest of my body sick. I am better off without it, and will certainly live longer having it removed. It had to be done. I like your sex drive Dave, you are a lot like me. I broke the world record... and masturbated a mere 36 hours after the surgery and ejaculated no problem (thank GOD). I had to know for my own peace of mind I guess.

Hey Rick, You had Chemo and Lymph Nodes removed? How big was your lump/tumor..And what stage was your cancer? I hope I caught mine early enough to avoid having these procedures done. I want to move on badly, However I will endure whatever I have to in order to prevent a return of this thing later in life. I lost my Dad to a brain tumor, don`t want that to happen to my kids. What is the likelihood of getting radiation for this?

-Brendan John

BrendanJohn said:

Thanks
Thanks again for the swift answers guys...Dave, I have been all over the TCRC website that you provided, thanks for the link to that. I am going to print out the pathology page, and bring it with me when I get my results on Thursday. This way, I can walk into the appointment with a strong idea of what the next step will be. Are you the author of that website? It is very helpful.

Rick, I have one blood test back that has been diagnosed as normal. Two more to go. I had a Cat scan or a CT scan...I am not sure what it was. Are those two the same thing? I had to lie down in a machine, and a circle apparatus whirled around me. I had to drink some stuff for two hours before-hand. What ever that was, the doctor came out and said I look fine. She said they were looking for tumors...Is this the same test that looks at my lymph nodes? Thanks again for all your help guys, I am going to refer back to the TCRC to figure out what test I have had so far. Also, the Lymph Node removal surgery looks BRUTAL. The big scar, possible damage to nerves...Anything (Including chemo) looks more pleasant than that.

-Brendan John

Davepet said:

Mine was 35% embryonal
And I was told that embryonal cells tend to be aggressive. They are also somewhat more likely to spread via blood stream than other types. My urologist was pretty sure I'd need chemo just based on they type of cells. No test can 100% rule out the possibility of some cells having spread before your surgery.

That said, there is evidence that active surveillance might be an option. The studies I looked at indicate that in stage 1 cancers (like your's appears to be, at the moment), 50% will eventually develop further cancer, however if caught early by the active surveillance, the cure rate it the same as if you went through the chemo now.

My guess is your oncologist may want further testing. My CT showed "nothing significant" but also wasn't quite normal, so my onc ordered a PET scan, which showed one Lymph node involved, so I'm currently in week 4 of a 9 week chemo treatment.

You are in the "waiting he!!" period of your cancer. You won't know anything for sure for a while yet. Your onc will fill in a lot of blanks, but I'll be surprised if he doesn't order further testing before finalizing you stage of cancer.

Keep us posted as you learn more,

Dave

slapshot_81 said:

helpful info
Brendan & Big Mike,

Guys, please read below, I hope this is helpful.

PLEASE e-mail me anytime b.pugliese@verizon.net. Brendan I am curious to know who your oncologist at DF is.

Brendan, your in Boston? Me too. I was also treated treated at Dana Farber and I volunteer in the "one on one" program. The nurses and doctors there are great!!! They kept telling me that if you going to get cancer, this is the type you want to get (not that anyone wants to be diagnosed with it) because of the cure/treatment rate. After my PET scan, my oncologist told me my chances of it returning within 5 years is 2%, not a bad statisic!!

I am 42 with 3 kids, . hopefully this will help you out. It's recap of my recent experience and treatment.

My wife is also an oncolgy nurse at a Boston hospital, so I had that on my side.

Back is October 2009 I was also diagnosed with germ cell cancer, mixed seminoma / nonseminoma. I went to get my hernia checked, my PCF ordered a CT Scan of my lower abdomen and saw lymph nodes behind my pelivc bone were enlarged. Had a needle biopsy done in late October.

On the plus side it's good they found it somewhat early. It did not start in the testicles, so nothing needs to be removed, it started in my lower abdomen and spread to the lymph nodes. The biopsy came back as embryonic, After almost 2 months of researching my medical records, it was found that at birth I had an undescended testicle which my oncologist said is a precursor for testicular or germ cell cancer.

In Novemeber, just before Thanksgiving I started chemo, the first of 3 rounds of BEP. The chemo wasn't as bad as I thought, except for the wait gain, the hyperness from the decadron and the amount of fluid I got during chemo that made me urinate about every hour around the clock. I found the bleomycin infusion on day 9 and day 15 to be the worst, the after effects gave me flu like symptoms and fever for about 8 hours after a 15 minute treatment. Tylenol worked the best. Being in shape and in good health definitly helped me plow through the chemo treatment. The last couple of days of my 3rd cycle, the nausea caught up with me bit, so I kept taking the prescribed meds, they do work.

I just finished my 3rd and hopefully final round on 1/15, had a CT scan on 1/21, I see the oncologist this week to hopefully get some good news. If not maybe 1 more round of chemo or surgury to remove any lymph nodes that are suspect.

One thing that really helped was keeping a daily journal. Write down how you feel, what you eat, bathroom habits, how you sleep etc, bring it to your dr. appt's it will definitly help.

Eat alot of strawberries, rasberries, blackberries and the like, it helps with energy levels and antioxidents are good for cleansing. I also found that green tea helped. Some days after a cycle you may not feel like eating anything, but try to to eat smaller meals during the day instead of breakfast, lunch and dinner. Even if you don't feel like eating, eat something, your body needs it.

You will get very tired, but the bright side of that is you can nap anytime you want or go to bed as early as you need to. Your body will tell how much rest you need, trust me, before chemo, I ran 30 miles a week and played hockey 3 nights a week (played in college many years ago), I could get by on 5-6 hours now I need 10-12 of sleep. Now in April, my phyiscal strength is about 95%, it takes time for your body to regroup. I still get tired in the late afternoon. Instead of running I started to walked every day for about 30 minutes.

I started chemo on 11/19/2009 and my hair started to fall out in mid December, so I just shaved it off. During the winter I used to wear a winter hat to bed....LOL. Now it is almost fully grown back.

Back in late February I had a PET Scan and all was clear!!!! And no surgery is needed. And I go to keep righty and lefty. I go back in June for my 3 month follow up CT SCAN.

Picture yourself as prize fighter...put the gloves on, step in the ring and don't stop throwing punches until and you land the knockout punch.

My thoughts and prayers are with you guys.

Please keep me posted!!!!!

slapshot_81 said:

"Bleo flu"
That's what I called it, felt just like the flu for about 8 hours. On the 5 day cycle, I had bleo, cisplatin and etoposide on day one, day 2,3,4,5 had cisplatin and etopiside. Went back on day 9 and day 15 for bleo infusion. Day 21 would start the cycle all over again.

Neulasta to me seems like a "wonder drug", it kept the blood counts very high. It did work because my three kids are like walking petri dishes from the crap that catch at school.

Give the the strawberries, rasberries and blackberries and try. They do work, I am convinced that the fresh fruit and green tea helped me get through the chemo relativley well.

Did you have heartburn at all during chemo? I had it for the first 2 or 3 days of each cycle, but pepcid or prilosec did the trick. For the sleeplessness the ativan or a tylenol pm worked to knock me out for about 6 hours.

I actually played hockey on Tuesday night in a men's league and felt great. I have not played since early November '09 so my legs were like jello and I was in agony the next morning. I am running in a road race (3.2miles) on June 6th, I put a small team together to help raise money for cancer research.

slapshot_81 said:

nausea
I had the same problem with the Zophran and constipation, but the amount of fruit I ate sort of off set it. You may want to try taking a stool softener, I did during the 2nd and 3rd round.

Funny sorry, well now it is, at the time I thought was going to die!!! I had finished my 1st round of chemo and was feeling great, I was still taking the zophran a few days after the treatment, I didn't need it but took it anyway (wy wife is a cancer nurse and made me take it to stay ahead of the nausea), I had a craving for buffalo chicken pizza so I ordered one for dinner, man it tasted good going down. About 2am I woke and thought someone had stabbed me in the stomach, the pressure down below was unbearable!!!!!! The chesse from the pizza interacted with the zophran and bound me up something fierce. I called my onc nurse and she said to take a stool softener and drink a glass of Miralax, this was about 7:30am, so I did. About 2 o'clock that afternoon, I thought the world was coming to an end!!! I never thought having a BM could feel so good, I know it's gross, but sort of funny now.

I had melatonin as well. Ativan is precription, pill form, used as an anti-nausea med but does make you sleepy, I found it helpful at night when I couldn't sleep.

During cycles I felt great so if I didn't need the meds I didn't take them.

On my treatment days I would go in early, about 6:30am, I live about 15min. from Dana Farber, so I would be hooked up with the hydration fluid by 7:30, chemo infusions would start around 9:30, so I would be out by 1 or 2pm.