New Member: Diagnosis & treatment update

[petep]

Hello all:

Name is Pete and I have found this forum especially helpful so I thought I would share where I am. First, I'll give details...

Small lump felt late Nov. 2005 - surgery (right orchiectomy) Dec 8, 2005.
- age 41; 42 this month (I'm the old guy with this I suppose)
- single tumor measured 2.5 x 2.0 x 1.5cm
- 95% embryonal; 5% seminoma
- normal blood markers pre-surgery
- all margins clear from pathology report
- epididymis free of cancer cells
- chest xray & CT scan clear

I also had an undescended tesicle (left side) at birth; surgery for this at age 5 so I was at increased risk for testicular cancer to begin with.

I live in Fla and flew to Indiana to meet with Dr. Einhorn. He provided a few possible paths including a) observation, b) 2 cycles chemo immediately or c)RPLND.

Choices b & c are not to address known cancer, but to act as a preemptive measure against micro cells that may have been outside the testis.

Choice b he said is not a poor choice, but he said if you can avoid chemo you should, and give yourself the 60% chance it may not return in year 1.

Choice c he said is what they used to suggest some years back with stage I non seminoma, but he said they found often they would remove the lymph nodes, and the cancer would still show up elsewhere and then the patient would still end up having to go thru chemo..

I am choosing observation, which he said he would do in my case if he were me. Rationale was that there is a 40% chance of reoccurence in year 1; down to 4% in year 2 etc...if it does return I would undergo 3 cycles of BEP and the cure rate is approx 100%....in other words, cure rate would not diminish by choosing observation over immediate 2 cycles of chemo now which was my concern...

downside is that there may be some anxiety during the wait and also the extra cycle of chemo...

his suggested observation for me would be: CT scans + markers every 2 months year 1; every 4 months year 2; 2x annually in years 3 & 4, 1x in year 5.

He also said because I had an undescended testicle on the left side, which was corrected at age 5, I was at increased risk for the left side cancer. Normally a 1% chance if you had cancer on 1 side; my risk is 10%.

I also let him know I would be seeing an oncologist at the Univ. of Miami (Dr. Benedetto) and he said he knew him well and would recommend him for local ongoing observation.

I will see what this doctor has to say, but it seems the protocol for treatment options, for my diagnosis, is fairly standard.

I'll keep you all posted on my progress and thank you all very much.

[dadmo]

Pete:
Welcome to the forum. Congratulations on the great job you did taking care of yourself. I have just one question, what made you think that you had tc? Most people don't catch it as early as you did. Thanks in advance for the reply.

[Scott]

Sounds like you're on the right track!

Hey, and you're not so old!!

[mikeygti]

Welcome petep !

Sorry to hear that you are now a member of our community ! lol
Geez...If your old,I must be ANCIENT !

Sounds like you are getting advice from one the very best in Dr Einhorn.
I concur in your choice of surveillance. Sure,the ongoing tests and waiting for results can be a drag,but believe me,you don't want to go through chemo,UNLESS it's needed ! I suppose the RPLND could be considered as well,but personally I think I would still opt observation.It's your choice either way.

Best of luck in your treatment,and know you WILL BEAT THIS !

Best Wishes

[matthias]

Pete:

nice post as it very succinctly summarizes your logical and fact-based line of reasoning in deciding on a treatment option for your particular situation. As such it can serve as a blue-print for others.

However, let's get away from the notion that TC at 42 is an aberration; it is not! At least 25% of afflicts, a sizeable number, are 40+ when it hits.

[petep]

Re: how I discovered the TC...just showering and washing and the side of my hand brushed against what I would describe as a "knot" feeling in my right testicle.

I waited a week, checking each day just waiting for it to magically disappear...and believe me, I never go to the doctor and am rarely sick...when it did not disappear I decided thiss was not something to ignore....

I went from primary physician to specialist same day, ultrasound next am, specialist with film that pm and surgery the next am...it happened quick.

[dadmo]

Pete:
You may already know this but embryonal is one of the components that has the ability to skip the lymph nodes and go right to the lungs, so make sure you always get the lungs checked.

[mindtilt]

Hi Pete,

Sorry you had to join us, but since there wasn't a choice be welcome to our family.
For all I've read and talked to my doctor, survillence in your case is the right choice, since there are good chances to be a localized tumor. A correct survillence program is crucial, and must be taken serious, but we must think positive ... that helps to win the battle with anxiety and for any possible reccurrence cancer

Good luck,

[petep]

thanks for pointing out my error - or at least making me realize it...

my observation also called for chest xrays...plus the blood markers + CT scan...in case of spread to lungs bypassing the lymphatic systemthe chest xrays are necessary.

[AdrianB1971]

!

DADMO has right. Be very very carefuly to your lungs especialy. In my case [85% embryonal] the cancer had spread directly to the lungs. I recomand you CAT scan for lungs!!! I discovered my lungs metastases with CAT....XRays where perfect normaly.

Good luck

[amorgan74]

Welcome

Hello Pete,
You have found a good place for information and guidance especially with personal experience from everyone out here. Our son had an undescended testicle at birth too but it was removed a little over a week later. There are a lot of people out here that will be able to tell you what they have learned and what to look out for in dealing with TC. There are also a good number of spouses, moms and significant others out here too that support you guys and your battles with this cancer. It sounds like yours was caught really early and I would also agree with everyone in that avoid chemo if possible but watch your lungs and ask questions. I hate that you're here but there's no better place that I have found for anyone whose life has been touched by TC. Good Luck, April

[mrb1980]

You are not old!!!

Pete,

Welcome! First of all, people in this forum probably call me "gramps", because I'll be 50 this year. So...you're not that old.

Second, I agree with your decision. Why have chemo in your situation? Everything points to surveillance. In my case, chemo was a certainty, and--speaking from the experience of 4 rounds--I wouldn't go through BEP if I didn't have to.

Third, you have come to the right place. The people here are so knowledgeable and supportive that I don't think I would have made it through my treatments without the folks at this forum.

Wishing you the best...and keep us informed!

[JAYHAWK]

Pete, I was 56 when I was diagnosed with TC (seminoma) in August 2003. Now over two years into surveillance; had my first six-month tests (CT scans and blood markers) last week. I will now have the tests at this interval indefinitely.....

[ramfan13]

Hi Pete

Welcome to the forum. My situation is a lot like yours. I am also one of the "old" men at 42 when I was diagnosed in 8/05. The funny thing is I lost lefty and I also had undescended testicle at birth on the right side and it was fixed at age 5 also. Weird huh. I was diagnosed with a Sertoli cell tumor which is non germ cell, but I now think I had some nonseminoma in there. My AFP has been a little elevated. I have had surveillance since 8/05 IO, but my oncologist recommended PET scans every 3 months. I am not sure if anyone els is getting PET scans out there, but I understand that they are pretty good in detecting cancer even more so than CT scans. I am not 100 percent sure of that though. Anyway, in my case on my second scan this week, they found a problem on my right lymph node. I am not sure why the problem on the right since i had the tumor in the left testicle. Well, I had blood work today and will see oncologist maybe next week to see what to do about the lymph node which looks to be more cancer.
I think surveillance is good for you, but I would ask about PET scans at times to detect it early which was my case. Good luck to you and welcome to the club that nobody wants to belong to.

[Don]

Welcome to the forums Pete!!!!! Hopefully surveillance will yeild clean scans are normal markers and the I/O alone cured your situation!!!!!! Keep us posted on your condition. Best of Luck my fellow Floridian !!!!!! DON