newly diagnosed

14 years 11 months ago #2247 by Mike
Replied by Mike on topic newly diagnosed

Hi Lynn,

I do NOT follow the comments made to you about 'cancer having come from somewhere'!

The cancer on the information you gave would seem to be bladder only!

The kidneys are fairly big meat filters extracting toxin from the blood stream and filtering ALL of your blood. One common toxin is the series of carcinogens (cancer causing) chemicals in tobacco either smoked or chewed. There are many other carcinogens but it is widely believed that those from tobacco are a primary cause of bladder cancer.

Those two meat filters just plug away extracting urea and dumping it in the bladder. Many of us drink too little plain fluid and thus pee far too infrequently so we store this toxin in our bladder where it is believed it starts cell degeneration and then abberation - hey ho Cancer!

Some likle me, start off with cancer in the kidney and having dealt with that get lucky and have a new challenge to face but it seems most get bladder cancer as a primary.

With the minor form of bladder cancer which has not invaded other tissues where does your chappie think these floating cancer 'seeds' came from - upline seems the only choice and that seems VERY unlikely.

Good luck with the operation but without any explanation or provenance of other cancers I personally would reject chemo.

Hope all goes well and if you have dark thoughts keeping you awake put the radio on quietly on a talk show and listen in to take your mind off all those what ifs so that when morning comes you are refreshed enough to deal with what is!

Greg L-W.

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14 years 11 months ago #2158 by hootie_9
Replied by hootie_9 on topic newly diagnosed
I wish you the best of luck. From what I've read having your bladder removed does sound like the right treatment. Guys I'm starting to wonder how correct these bladder cancer statistics can possibly be.. I read there are 50000 new cases a year and like 75% of them are cured and that it is like the 4th or 5th most common cancer.. so does that mean that he is one of the 12500 people out of 300 million people in the U.S. that has advanced stage bladder cancer? How could this be a common cancer? This seems way too extremely rare to me. Are these statistics correct?

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14 years 11 months ago #2157 by rentanag
Replied by rentanag on topic newly diagnosed

Not all doctors are created equal, even the ones at places as reputable as MD Anderson Cancer Center.  You really need to get your 2nd opinion outside of the MD Anderson system, unless you are totally comfortable with what you're being told.  Personally I'd be asking lots of questions, just like you're doing here.  Listen to that voice in your head, is it telling you "This is good, the right thing to do", or is it telling you "Hey, I'm not so sure about this situation".  I hope you'll be getting posts from lots of different people on the WebCafe, and maybe that will help you to get a better handle on this situation you and your husband are facing right now.

Good Luck.


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14 years 11 months ago #2155 by gault94
Replied by gault94 on topic newly diagnosed
Thank you Lou.. But now I'm really confused. We have a consultation with a surgeon next Wednesday and I'm hoping that he can answer my questions. I want what is best for my husband. I realize that it is our choice on what treatments my husband should get but I'm so blind when it comes to this situation, that I want to believe that the doctors at MD Anderson would not want to use my husband as a test subject. Don't you think the surgeon would be able to answer my question concerning if Chemo is the right treatment? I thought about calling our orginal Urologist that ran all the test and who performed the cystoscopy. He refered us to MD Anderson since he directly didn't treat Cancer patients. If anyone can help with this please reply.
Thanks, Lynn

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14 years 11 months ago #2152 by rentanag
Replied by rentanag on topic newly diagnosed

After posting my message to you, I read your response to Jean's post and I must say I've never heard of what your doctor told you as being a reason for chemotherapy.  I had been a smoker (I quit 1/1993)and we're pretty sure that is what's responsible for my bladder cancer, and it's the toxins from the tobacco that are filtered out by the kidneys and they end up sitting in your bladder. The toxins in your bladder cause the cancer, at least in my case and it didn't come from somewhere else it was there. It's called a primary cancer for just that reason because that is the location it starts in, it doesn't come from somewhere else.
If I were you I'd get another opinion somewhere not associated with this doctor, and that means you need to go to a different hospital.  It is possible to get a second opinion from another location without having to travel there if that's not a possibility for you, but if you're able to travel somewhere else for one it's a good idea.


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14 years 11 months ago #2151 by rentanag
Replied by rentanag on topic newly diagnosed

I was diagnosed with high grade TCC deep muscle invasion (T2 but the doctors actually thought it was T3 until my surgery), the CT scan prior to my TURBT showed three enlarged lymph nodes(one was largest the other two only slightly enlarged).  After other testing I made the choice of having my lymph nodes checked laproscopically and if they were negative for cancer they would proceed with the cystectomy.  Then they checked the other organs for cancer, all frozen sections were negative (I had a complete hysterectomy at the same time which is normal for a female of my age -- 55 in 2/2004).  Once all tests were negative they proceeded on and made me a new bladder from ileum and hooked it up to my own plumbing (urethra--which they also thought might be involved because of the location of one of my two tumors).
I have had all the usual follow-up tests since that time, it's now been two years and nine months to the day (2-17-2004) since my surgery and I have no evidence of disease.  In addition to all I have written I want you to know that I have not had chemotherapy of any kind, not before or after or since my surgery.  I'm quite happy with the decision I made, and for me at least for now it's been the right decision.  I know there are others on this site that can tell you very similar stories to mine, with pretty much the same results.  I hope this will be of some help to you and your husband, just remember it's the doctor and the patient who make the decision.  But most of all it's the patient's decision that is most important, and that comes from being very thoroughly informed of all aspects of the disease and also the possibilities for treatment and their outcomes.
I'll have you both in my thoughts during this time of decision making for both of you, and I'll keep you in my prayers as well.

Lou Graham
RC/ ileal orthotopic neobladder 2/2004
University of Alabama at Birmingham Hospital

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