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I need input from you all

12 years 6 days ago #21421 by susant
:) Thanks all for talking to me about this. I'm ok today. Decide to just worry about my cat, he is having bad teeth problems and it might be serious :ohmy:

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12 years 1 week ago #21406 by orpheus
You are allowed to cry and carry on if you want. Everyone of us has done it and probably felt bad after because we weren't "really that bad, we could at least survive." It is certainly that awful fear of mortality that grips us, cancer is a hard disease to deal with no matter what kind or grade.
I hope you will feel that we are all having a big group hug that is what we are all here for, each other. Courage, there will be better days ahead.

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12 years 1 week ago #21403 by Nix
I have been dealing with Bladder Cancer for only two years......so I am not and expert by any means.
Of course when I heard the word Cancer I was very upset. Since mine was Ta it was removed and I thought all is well. I guess I thought you just took care of the cancer and moved on - nine months later CIS was removed and I felt my world turned up-side-down. After reading everything I could and getting second and third opinions I had the 6 BCG and so far 2 maintenance rounds. Just passed my one year clear mark.
I think in the beginning I thought I would get "you are cured" from the Uro - after understanding that just does not happen - it is a process.
The Bladder Cancer road has been a continuing journey for me, since I am type A personality, I like to get things done and move on and it will not happen with this, it just doesn't work this way.
So on days when I am scared (right before cystos) I thank God for my husband, children and grandchildren - prepare for the worst and hope for the best.
I am indeed grateful that we can be watched closely and any bumps in the road acted upon ASAP.
As I said before, this is a journey.


Nancy S
dx Ta 11/06
dx Ta CIS 10/07

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12 years 1 week ago #21391 by pemquid
I'm probably about at more or less the same point you are in terms of bladder cancer, so can't really speak from years of experience. Maybe I'm overly optimistic (or self-delusional) but right now I truly believe I'm going to live a full and long life in spite of having bladder cancer (granted, I'm already 65, but I'm otherwise very healthy and have long-lived family members on both maternal and paternal sides). Not to play amateur psychologist, but I think one's personality (and support system) plays a role in how one reacts to cancer. All of us have times when we feel blue, angry, frustrated with having blc. But, my own way of coping with illness or other "bad" things happening in my life or my family's life is to try to cope with it and move on as if it wasn't there, at least on a day to day basis. Again, it's perhaps easier for me to do this as my cancer is (knock wood) the "best" kind of blc one can have.

My dad had blc in his early 70s (was a smoker), had one recurrence at some point, then was all clear until his death at age 84 from unrelated lung cancer. This was back in the days when the only treatment was TURBT. When I had my first tumor in 2006 (low grade, non invasive), I got it in my head that I was going to follow in my dad's footsteps. Therefore, I was really shocked (and mad) when I had a recurrence of two tiny (pinhead size) tumors at the 2-year point. I was more upset then than I ws at the time of the initial diagnosis. My uro has put me on the BCG protocol (6 weeks, just completed, no side effects), with maintenance therapy thereafter. I read all I could, and questioned whether I really needed BCG at this point for low grade tumors which hadn't showed up until 2 years after the initial tumor. I called my cousin, who is a research radiologist specializing in the urinary tract to ask him what he thought. He said that the BCG was not a bad idea now, as the new tumors were in different parts of the bladder, and neither was in the same place as the original one. He said, "What this shows is that your bladder lining wants to grow tumors." Both he and my uro refer to these low grade papillary tumors as "nuisance cancers."

Although I was initially hesitant about the BCG, my feeling right now is that if BCG can indeed slow up the rate of recurrence (so I won't need too many TURBTs in the near future) and if it reduces the likelihood of progression, I'm all for it. On the other hand, if my uro (like yours) had said "let's wait and see," after removing the two new tumors, I'd have been perfectly OK with that as well.

I guess my advice to you is to go with what your uro is recommending for now. If you have a recurrence in the near future (3 months, 6 months) or if a recurrence is different than what you've had (bigger, more tumors, different grade or stage) then definitely another course of action should be considered. I think there's some research that suggests that immediate TURBT or "zapping" may not be warranted for single small, low grade papillary tumors, but just "watchful waiting." (Repeated TURBTs and fulguration can do damage to the bladder, and possibly in the long run reduce the capacity to hold urine.)

Finally, helpful as this Website and forum are, I think you can get yourself overly worked up by reading about dire things happening to others. Those who are chugging along without invasive or metastatic cancer, not having recurrences, or getting an occasional recurrence and having it treated, are way less likely to be active participants on the forums. Statistics are in your favor (and mine), but it's much harder to relate to statistics than to personal stories; and certainly a number of the folks on this forum are living with (or have gone through) some pretty serious stuff.


Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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12 years 1 week ago #21385 by wsilberstein
There's no avoiding the fact that cancer is a life changing event. The only time I cried about it was when my daughter cried. But after 7¾ years without a recurrence, it remains a significant part of my life. Every bladder twinge is potentially a recurrence. And then there's the cystoscopies, which for me have just been moved to once a year - but since I have a urethral stricture from the treatment, I have to be dilated for cystoscopies, so that's always a grueling experience. And I had so much trouble with the stricture in the past 2 years that I'm not sure I'll make it another 6 months without needing a procedure.
But then, there's so much of life that isn't about my bladder, like my daughter getting married in February and my son getting married the following fall. And work, which I go to even if I have to go catheterized after a procedure. And cookies to bake for all the special occasions.
And since I can't afford to retire for another 10 years, and I expect to have grandchildren to enjoy, I intend to keep chugging along for a lot more than those 10 years no matter what my bladder thinks.

TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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12 years 1 week ago #21382 by susant
All of you have helped me . I don't feel so bad now. I have been very strong like I said, but i just was surprised by him finding a new tumor.
I had decided I didn't have any more. i can't be right all the time I guess.

But I will do what I have to so i won't get worse. It scares me sometimes , but I will do it.

I'm glad you all felt like I have from time to time. Thank you for assuring me i am not being a weak person :)

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