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Life between Cysto\'s

9 years 4 months ago #29456 by mmc
Aha! So maybe it's an Irish thing. I'm half Irish by heritage so maybe that's why I can think the way I do. I have some Italian and German/French also so at least I can go out in the sun without turning into a giant sunburned freckle. :)

Cynthia's suggestion of counseling is an EXCELLENT one for anyone diagnosed with any cancer. As a matter of opinion (can't say fact) counseling is probably an execellent idea if anything seems to dominate one's thoughts for an extended period of time. They are very good at helping people work through scenarios. Things like "What's the worst/best/most probable thing that can happen?". That is then followed by "What would/should you do in each case?".

Things are scariest when there are so many unknowns. When thinking through scenarios, it can really help one wrap their mind around possibilities/probabilities.

Sorry...I'm rambling again.

In your case Vi, since you had a very small (aka caught early), low grade tumor, your most probable outcome is a very good one (as long as you stay on top of things and keep to a good treatment plan).


Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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9 years 4 months ago #29455 by Cynthia
The human mind is a miraculous thing for most of us. When I was first diagnosed all I could think about was bladder cancer my life and mind were consumed with it. Each recheck was an emotional painful thing and waiting for results from scans and biopsies out and out torture. Time has given me perspective no matter what they find if it can be dealt with it could be worse. My husband comes from and Irish heritage and his Grandmother had a saying “Don’t buy trouble and pay interest on it”. We spend a lot of time worrying about what we can’t change or may never happen as Mikes says. Doing what I do for a living I deal with a large volume of bladder cancer survivors and as a rule time is our greatest friend in the emotional side of handling the stress of bladder cancer and rechecks. Everyone no matter how long they have been doing this has some stress around recheck time that is natural. However some find that the stress is more than they can deal with and for them counseling is a good course.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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9 years 4 months ago #29446 by pemquid
I'm with Mike--I don't even think about my cystos until perhaps the day before or day of. I've had so many "all-clears" since my first tumor was removed that perhaps I'm overly optimistic. I did have one recurrence after two years, and that kind of threw me for a loop at the time (I was MAD) because I had been looking forward to going to the 6-month check-up schedule. Now, it's been over 18 months since that recurrence, and if I do have another recurrence, I think I will be a little more prepared. I do think that the longer you go with clear check-ups, the less you think about the future check-ups.

I also think that one's personality plays a role. While I'm realistic, I'm also an optimistic person and do not dwell on negatives. My father used to say "repression is a valuable and much maligned defense mechanism." (He was a social worker.) Let's just say that "realistic repression" is very handy for living a normal life and not letting bladder cancer be a focus of ones' existence. It's perhaps easy for me to operate this way, because my blc has been very low grade and non-invasive, and I've not had to deal with RC, metastasis, etc.

Ann

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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9 years 4 months ago #29442 by mmc
I usually just didn't think about it and went about my living life normally. I think there were a couple of times the day of the cysto that I'd worry.

I'm not normal though.... (my wife tells me this all of the time).

My philosophy is that I don't want to waste any time worrying about things. If I worry and whatever it is I'm worried about happens, then worrying didn't do any good. If I worry and it doesn't happen, I've wasted part of my life worrying.

In any case, even people at work can't understand how I do this. When I had the cancer diagnosis, they couldn't figure out how I just went on as usual and even joked about the cancer. They said they'd be worried sick. I certainly understand their point but it's just not for me.

I enjoy being fat, dumb, and happy. It's worked so far and I'm sticking with the plan. :)

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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9 years 4 months ago #29441 by vgau
As so many of you seem amazingly with it, I want to ask the newest question on my mind.

How do you or can you keep your mind off of what might happen at your next check up?

I know that I have little to worry about compared to others, but it is still a concern and will be for years to come. I seem to be going longer and longer without worry, but it seems to always be on my mind.

What do you do to keep this from taking up so much time in thought and worry and have a normal life between cysto's?

Vi

Dx 10/5 Non Invasive Papillary

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