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Diagnosed this week, would love some feedback

2 years 5 months ago #52646 by Jack R

I have been bleeding, to some degree for most of the past 18 months. Most often it is microscopic, sometimes vivible as a tint, occasionally bright red and Once in a awfful while with clots and tissue debris. Or, simply put very variable. Lab tests always come back with some blood, and I can feel the blood burn when I urinate. My uro wants me to report all changes in bleeding and other sysptoms as we continue treatment.

If you don't have a primary watching the other aspects of your health while you go through this, ask your urologist for a referral. Cancer can cause many other changes - you don't want to let them get out of hand while you concentrate on the cancer.

Spill your guts to your doc about everything that bothers you. Bladder cancer can have some strange side effects, and you need someone to put it all together.


What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis

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2 years 5 months ago #52637 by Joseph O
How are your treatments going?

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2 years 5 months ago #52636 by Joseph O
Hello again,

So, I guess a year and a half later it should not be a big surprise that I had some bleeding recur when I urinate. I know bladder cancer has a high recurrence rate. It only happened once, but they have moved up my 6 month scope a month to check it out.

More concerning is that I have lost 20 pounds in 2 months (over Christmas and Thanksgiving during which I certainly did not diet). I also have a strange pain/tenderness in my right calf that has not healed over that 2 month time frame as well.

I know what this could mean, or at least I think I know, but any help, thoughts, feedback, support would help.

1. Could the weight loss be caused by recurrent bladder cancer?
2. Could it be something else?
3. What's with the calf pain?
4. For men, is the bleeding always the same? This time it was more of a mucus "clot" that came out (sorry for the image).

Hope everyone is well and at peace.

Joseph O

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4 years 4 weeks ago #48936 by Georgieb
Me too,start bcg treatment next week stay positive

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4 years 4 weeks ago - 4 years 4 weeks ago #48935 by Nicke
Hi Joseph,
Sorry about your diagnosis, but as Sara Anne wrote, it is as good as it can be. Answers to your unanswered questions:
WHO stands for World Health Organization. WHO has set the standard for grading cancer.
Tumor size > 3 cm is considered large. However, size is less important. Grade is more importent. Low grade has very little risk to progress to more serious cancer.


12-12 Diagnosis
13-1 Turb TAG1
13-5 Turb Ta low grade, multiple
13-10 Turb TaG2, multiple
13-11 Mitomycin 8 weeks + 6 month
15-01 Turb

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4 years 1 month ago #48934 by sara.anne
Welcome, Joseph, to our very exclusive "club" which you did NOT want to join!

Your diagnosis is about as good as it could get, for bladder cancer. I am not sure what WHO means...perhaps if you provided the it was used in a would be easier to tell.

My guess is that your urologist will not prescribe any additional treatment right now. However, he will no doubt schedule you for cystoscopy exams every three months for a while. If everything goes well, they will then be done every six months and, finally, every year for life. As you have probably read, bladder cancer has a very nasty habit of returning and you want to be scrupulous about keeping these exam appointments.

Not a whole lot is known about the causes of bladder cancer, but smoking is one of the few things that are definitely linked. Drinking water is good for all kinds of health reasons, so that is a good idea.

Please keep us informed of how you are doing

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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