What if.......

[Totally]

What if all the urologists in the world who have treated TC, are not being honest and open with their patients? Your balls are a very private matter. Even doctors don't like to talk about them until something is wrong. Remember when you went to camp and your physical "down there" consisted of the doc shoving a finger up into the pubic cavity on either side of your penis..."please cough." They were checking for hernia....wha...??? If a definitive cause were to be discovered and it reflected badly on urologists and researchers, would they be able to continue treating patients? If you have TC or know someone who does......challenge that urologist. Ask them questions. Have them ask you questions.

[Paul54]

I have had TC. I estimate we are about the same age, although reading back over your posts, you were really put through hell starting at an early age. I'm not sure what you are saying. Of all the doctors I've seen, I thought they were all honest, but the problem I had with my first urlogist was that he was overworked by a senior population with many serious problems. Other have been under-informed about TC. Do you think they are holding something back? Fortunately, incompetence and gross negligence are getting very hard to hide in the internet age.

[MRMRSU]

Dear Totally: So sorry for the anger and frustration in your post. I think we need to remember that MD's are human too, and that it is up to us as individuals to be our own best advocate when it comes to our health. Has something recently surfaced with your fight against TC?

[Les' Mom]

Hi Totally,

My son was treated by wonderful urologist. While the first one had not dealt with teratoma in the testicle, the oncologist working with the urologist understood what the teratoma meant.

We have to trust the doctors that treat us.

Love,
Pam

[Scott]

Totally, can you say some more about what prompted your post today? What's up?

[Totally]

I'm just at a crossroads. I'm at a point in my life where I've never been poorer financially and where I've never been sadder about the research done about TC. I have recently seen some websites formed to remember other TC warriors who have passed on. It just gets to me that there are so many theories out there about TC. From the environment to pesticides to an undistended testicle, nothing that anyone could say is strictly a commonality. What is the common thread? I want to build a foundation that would fund research for 2-3 years and then fund education from then on. Sorry for bouncing around with ideas. I have several companies in mind that I would like to contact to help fund the research initially. I can't devote much time to this project right now because of my financial problems, but.......I can't stand to see anyone else go through what we have or will. So.....I don't know if my issues are so much with anger or just frustration. Don't misunderstand, I appreciate most of people out there hammering away at the cause, but how many researchers are out there treating the disease verses finding a prevention? The one thing up against us is numbers. About 8,000 guys are diagnosed every year and tragically 400 are not treated and saved in time, in the US. We don't have thousands upon thousands of victims.We do have Lance Armstrong as our champion for visibilty, but his foundation cares about(rightfully so) all cancers not just TC. We need a national spokesperson for TC.

[dadmo]

Totally:
The snales pace at which progress is made can indeed be maddening/frustrating. The idea of starting a foundation is wonderful and I look forward to the day when I can send in a donation however right now I think you need to burn off some of your feelings. Have you ever thought about doing one of the Livestrong Challanges? They are wonderful life experiances.

[mattyk1985]

To be honest there is very little awareness of this cancer type and to be honest I knew nothing about this cancer type prior to diagnosis, I just knew having a lump anywhere is not a good thing, luckily I always used to mess around with the fellas as I never did a regular check.

I like the idea you have about the foundation. I would certainly make a donation when everything is sorted. When I feel the anger and frustration side of things I find blasting my stereo on fairly loud works well.

[Totally]

How about we flood the makers of Trojan Condoms or Viagra or Cialis with letters of requests for foundation help? I don't know.....maybe that might get things going....Anyone have any other ideas for funders? In this day and age, it's probably tough for anyone to cough up some dough. I'd like to do a cross country trip for the TC cause, but I think it might be easier to recruit three hundred guys to walk or run 10 miles each:

[mattyk1985]

How about we flood the makers of Trojan Condoms or Viagra or Cialis with letters of requests for foundation help? I don't know.....maybe that might get things going....Anyone have any other ideas for funders? In this day and age, it's probably tough for anyone to cough up some dough. I'd like to do a cross country trip for the TC cause, but I think it might be easier to recruit three hundred guys to walk or run 10 miles each:

I'm in the uk so I would be up for doing a john o'Groats to Lands End bike ride to raise some money for the foundation and maybe a bit of awareness along the way.

At least riding a bike will be less uncomfatable now

[dadmo]

At least riding a bike will be less uncomfatable now

Only if you keep making right turns.

[Totally]

You know that would be really something to get guys from all over the world to walk their country width. I know 2009 is too soon to get started on this, but I think we could get something up and running for the Summer of 2010. In some countries, we could do virtual walks, but for the most part we would do...the real thing. Maybe by 2010, we would have some big players on board the foundation,too. By the way, Church and Dwight is the name of the company thats make Trojans.

[Already Bald]

...I want to build a foundation that would fund research for 2-3 years and then fund education from then on... for TC.

Sounds like an excellent goal.
You seem to have the passion, but you will need to stay positive.
The money is out there, you just need to follow it.
A thorough Action Plan and Mission Statement is the start-
You will go nowhere stating that doctors have deliberately hurt people, though.
Good luck.

[Paul54]

Nike is a great company and fantastic supporter of the Lance Armstrong Foundation. They also organize a large event somewhat like you envision, last held August 2008. http://www.livestrong.org/site/c.khL...Human_Race.htm You could include the Philly Livestrong Challenge with a lot of us and keep going to the Human Race. Awesome. Looking for ways to help kick cancer's butt? You are in the right place.