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My Father

10 years 7 months ago #16057 by Mark Rice
Patricia, many thanks for the link as I will look into further. Marie, I will try Dr. Jewett tomorrow as I'm really keen on getting a second opinion - not sure how that would work with our current urologist though and getting our files over to him. Would be great to possibly connect with you further once we get some more information on the diagnosis. T2 or T3 N0 M0 (M1 if its spread beyond the bladder)is what we were given yesterday.

Wendy, I appreciate the link as well as the words. And Rick thanks to you as well. A lot of "what-if's" going on at the moment; trying to do my best to stay strong on focus on future but I guess it's only natural to want to turn back the clock. Regardless, we're just playing the waiting game and hoping no spread to the bone. Will keep you all posted.

My very best,
Mark

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10 years 7 months ago #16053 by RAH
Mark,
I am glad you found this website. As you can see in just short of a day, you received valuable information. It is great that you are taking the lead in the education of Bladder Cancer.

I had a very similar experience to your dad. I had dark brown urine for six months before I went to the doctor. They looked inside and saw all the cancer in the bladder. I did have slight pain in my groin area at the same time as the brown urine (I thought it was from riding the fifteen speed bike at the time).

My wife told me the other day that in the back of her mind she wondered if I would have went to the doctor as soon as the brown urine showed up that maybe I wouldn’t have needed the surgery. I suggested she spend exactly NO time think what we could have done different.

Keep focus on the treatment and surgeries for your father and minimize the thoughts of “What If” they do not work.

Take Care
Rick

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10 years 7 months ago #16042 by marie
Hi Mark,
I am in Toronto and my doctor is Michael Jewett at Princess Margaret Hospital. His secretary is Donna and she can be reached at 416-946-2909 ext. 4. Dr. Jewett is top notch. I was with a urologist in Oakville who initially and went to Dr. Jewett for a second opinion. I am 49 and had my bladder removed in January. The surgery went well. I would be more than happy to talk to you about anything I can help with. Reach out to people on this site...there is info on every aspect of this disease here, and everyone is so helpful. It only took me a few weeks to get into Dr. Jewett.
God bless,
Marie

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10 years 7 months ago #16036 by wendy
Hi Mark,

Have a look at the info here:
http://blcwebcafe.org/content/view/123/133/lang,english/

I'm sorry to hear that your father has emotional problems on top of a scary diagnosis. The worst of it is right now, before you know exactly what you're dealing with.

Although Karen is correct that surgery is not usually done if there's spread, if there's minimal spread, or if it will improve quality of life by preventing blockage or other bad symptoms, it is up to the discretion of the doctor whether cystectomy is the best option. That, along with the patient's choice. Sometimes a patient isn't give a choice, or insurance will say 'no', but still know your options.

These days pre-op chemo is all the buzz from experts who are focused on prolonging survival. If a person responds fully to chemo and has a bladder with no more cancer in it post-op, that can mean very good disease free survival increases.

Let's hope there is no spread to the bone or other organs. If it's only in the regional nodes, this is actually a curable stage. Pain in the groin and leg can be something else, maybe a nerve...? Wish I could say.

Keep in touch, let us know the results and the stage when you learn it. I send my best to your father.

One more thing...as a person with phobias, I couldn't have made it through my own cancer journey without the aid of valiums before every test and injection...just a thought.

Take care,
Wendy

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10 years 7 months ago #16026 by Patricia
Mark..here are the contacts...Marie and NT mom...you can hit their name and send a private message to them...http://bladdercancersupport.org/smf/index.php?topic=1926.0
..
Pat

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10 years 7 months ago #16022 by Patricia
Mark....Princess Margaret Hospital has a good reputation for bladder cancer...here is a link to one of their surgeons who did his fellowship at Memorial Sloan in NYC......http://www.uhn.ca/Find_a_Doctor/fullbio.asp?MDid=1354
We have a couple of people here on the forum from Toronto ..i will try to find their posts and put you in contact.
I know you are dealing with a National Health Care system so i don't know the protocal in seeking second opinions or in choosing your doctor...but you definately want someone who sees a lot of bladder cancer and has done lots of surgeries.
Pat

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