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Wanted - Mentor for newbie to BC!

11 years 11 months ago #9188 by Potter
Hi Folks,
thanks for your responses. Lots there to consider! In a previous post I spoke of frequent urination which was driving me mad. I then intimated it was getting better. However, it returned to a lesser degree this weekend. I thought about this and considered what I was doing different. The single difference was; it improved whilst I was taking anti-inflamatories for a back problem. Must discuss this with my doctor!

Potter :)

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11 years 11 months ago #9122 by timb
absoloutely. and I think warren's point is well worth repeating that I was unlucky. the docs were shocked and the Ta G3 and CIS came pretty much out of the blue. but it's important to keep those appointments

tim

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12 years 5 hours ago #9110 by wsilberstein
Tim's story is good because it shows you that even if things go from bad to worse, there is life and good health after bladder cancer. But some of us are even luckier than Tim. I've had my complications, but I was TaG3 at initial presentation and I've never had a recurrence in almost 7 years. There's room for hope, but it can't be head in the sand, make it go away hope. The possibility of a recurrence is still part of my life, and I go for regular follow ups.
BTW, I also never smoked and was fairly young (52) at diagnosis.

-Warren
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 13 hours ago #9093 by Rosemary
Potter,

I like that! We got the T Shirt! And boy, did we ever! I'm off to work and have a CT Urogram scheduled in my day. I will try to think about any insights that I have learned while blazing the bladder cancer trail, but right now nothing comes to me (lack of coffee)

Right now the best advice that I can give is to keep talking!

See you around,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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12 years 17 hours ago #9086 by timb
My original dx was TaG1 and it gradually crept up over the years, first to a TaG2 and ultimately I ended up two years ago with TaG3 with CIS. I tried BCG for a couple of years but both the tumour and the CIS kept coming back so I went with an elective cystectomy/neobladder exactly a year ago to this very day!I'm 44 now. I have been generally really really pleased with my neo and, apart from some nighttime leakage its been a million times better than I expected. the recovery was tough but it has been worth it and the frequency of checkups has now dropped back to the extent where I can plan my life properly once again. During the BCG years I took the green tea extract on the back of some promising data from UCLA that suggested it increased the efficacy of BCG. but I think this was over a period. aged garlic was my other tipple. other than that I took a good multivitamin, an ester C and ate organic. also avoided too much meat and smokey, salty or densely flavoured foods. It clearly didn't do much for the BCG but I felt fantastic which, to me, is the whole point of taking this stuff. in the back of my mind i obviously I wanted a cure but its more about ongoing quality of life and I've never felt or looked better. of course now Ive taken the "curative" route I'm back to a more "modern" diet but still try to be sensible.

Mentally, I took counselling at the Bristol Cancer Help Centre (now Penny Brohn Cancer Care) here in Bristol. Im not sure how much I really needed it but it was great to know there was a resource that I could draw on with lots of expertise. they have a helpline and can offer all sorts of sensible advice on the issues you are enquiring about. They offer a holistic approach which seems to be the route you are naturally following. give them a call or checkout their website. I don't have the details to hand but you can google them. they offer a donation scale and also have a starter pack which they will send you full of advice and a mail order catalogue for their shop. not sure where you are but being in bristol it was especially useful for me.

my post-op day-to-day life is exactly as it was before. the only real difference is that I wake twice in the night to empty the neo. apart from that, I work hard, socialise and use alcohol and just get on with things. I try not to dwell. I want to resolve the nighttime continence at the moment but it doesn't get me down I just make sure Im prepared. I got married last week and have my aussie wife and her boy to think of now and that, along with my job, fills my mental space aplenty!! I haven't too much time to dwell on my cancer. this site is my guilty pleasure in that department and reading peoples experiences and communicating with the good people here going through their battles gives me some focus.

Your dx sounds pretty encouraging. I think I was unlucky. keep an eye on it but there's every chance that the ta g1 will stay just that.

all the best

tim

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12 years 1 day ago #9064 by Potter
Hi Tim,
I was dx as grade 1 pta. I don't smoke. I am 49 years of age. Am physically fit and have always eaten relatively well since getting married many moons ago. I was for example considering buying some gree tea extract after being recommended this and came up against the pro and contra arguments. I don't want to get into the supplements if they are money wasting and ill conceived "remedies." Is there anything in addition to my regular diet that I could be doing. Moreover, I am trying to mentally adjust to my current health status. By that I mean giving more focus to the present at the expense of the future. I am pleased you are still here 15 years after your dx. What category was your BC and how has it changed your day to day life,

Potter :)

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