Thinking about a worst case scenario...

[QuintenvG]

In the last 5 years I had my share of bad events. In 2002 I got a spinal cord injury, last month I was diagnosed with TC. As a hypochondriac, I'm very concerned about this all.

I seem to have a very rare tumor. The thing grew very slowly and the doctors couldn't detect it, even after three ultrasounds during last year. I'm from The Netherlands and this week I visited the the most experienced TC-doc in my country. He said he only saw 5 of this tumors in the last 20 years!

Fortunately the cancer didn't spread and I was diagnosed with seminoma, stage I. However, because they found one lymph-node that was a bit bigger than the other ones, my urologist spoke about stage II-A, although he isn't sure this lymph-node is involved with TC.

Next Tuesday I'll start with RT (15 sessions, spread over 3 weeks). I know I'm fortunate, because the TC didn't spread, but I'm still worried that I'll be one of the very few men (5 percent, they told me), who won't survive. So now I'm thinking about this all the time....

My question: how do you guys cope with these kind of thoughts? And why doesn't a small amount of men with TC don't survive? Are they simply unfortunate or was their treatment insufficient? And did any of you hear about a slow growing TC? Is this rare indeed?

A lot of questions, but any help is welcome!

[djmac]

The 5 % ? Most people who do not survive this disease, as with most cancers, because of the lack of early detection, and with Tc, it is that and lack of proper treatment.

For stage I seminoma, the survival rate is >99%. I suspect that a large percentage of those who do not survive may be lax about their follow-ups, or improper care. You'll be fine. Being a hypochondriac will stack the odds in your favor!

Best,

djm (also a bit of a hypochondriac)

[Margaret]

For stage I seminoma, the survival rate is >99%. I suspect that a large percentage of those who do not survive may be lax about their follow-ups, or improper care. You'll be fine. Being a hypochondriac will stack the odds in your favor!

Best,

djm (also a bit of a hypochondriac)

I am such a hypchondriac that I even find things wrong with other people But as "news" goes, your news of Stage I Seminoma is about as good as it gets for TC. I am sure you will do great! I have learned a more positive outlook since my husband got sick. It is helpful not only for myself, but as a caregiver we all need to try and stay 'sunny' for the people in our lives that have to battle something like this. Caregivers freaking out, just makes it harder on the person trying to get better. I had to learn that myself as I nursed my husband back to health. Funny thing is, having to deal with a real illness, made my hypochondria ways go away a little bit. I hope you are not having too much anxiety...we are pulling for you.

Margaret

[petep]

Hi -

I will tell you two things - the worrying/mental aspect is the worst and hardest part of this...

and two, it must be most difficult to be a caregiver....just watching and helping and not being in the game...

to your question...how do you cope....just my thoughts...

1. get out of your mind the wish that this wasn't so....that you could go back a few months or years and not have to deal with this....for some reason, these are the cards you've been dealt....tell yourself you will be a role model and show others how to approach adversity....you will impact many people, I promise you.

2. Go see some kids that are terminally ill...just chat with them if you can, maybe bring a couple small gifts....you seen them, you see their parents....and you will thank your blessings regardless of your circumstances....and you will feel good about making someone else feel good.


I know this is tough...but its part of who you are now...you actually have a great prognosis...

as far as the 5% you stated....you can worry, or not worry...it won't change much...shre thoughts on this board - we are all in the same boat and misery loves company...just kidding - its a darn positive supportive group....you'll even see some funny posts...this is my favorite...

http://www.tc-cancer.com/forum/showthread.php?t=4860&highlight=penile+cancer

you'll laugh that you are not alone in your thoughts....

pete

[fuse929]

Also, Quin, seminoma isn't really a super rare form of TC. It accounts for about 40-45% of all TC diagnosis, in the US at least, and is the easiest to cure of all the different types.....sometimes not even requiring radiation! I find it odd that your doctor has only come across 5 pure seminomas in 20 years.

I don't think you need to fret about needing 3 ultrasounds before action was taken.......I needed 2 ultrasounds before the doctor realized I wasn't crazy about my symptoms.....haha.

Bobby

[QuintenvG]

1. get out of your mind the wish that this wasn't so....that you could go back a few months or years and not have to deal with this....for some reason, these are the cards you've been dealt....tell yourself you will be a role model and show others how to approach adversity....you will impact many people, I promise you.

Hi,

This is a simple, but great advice! It's good to read your opinions, knowing that you're not alone....

Tuesday I'll start my RT, which will last for three weeks. Does anyone know, when you get a result of this RT-sessions? And when it's clear if the RT has worked?

[GABRIEL]

You are going to get a CT scan after the RT but I`m really sure everything is going to be ok. I had 10 sessions and untill now everything is normal. I`m going to get a check-up in two weeks or so and I tend to be anxious but still positive