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Advice to newly diagnosed

3 years 2 months ago #49480 by anthonyve
Hi George,
Thank you for getting back to me.
It's really encouraging to know that there's a good quality of life even if this thing ends up in the worst case scenario.
Meanwhile I am staying - more or less - positive.
Cheers,
Anthony

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3 years 2 months ago #49478 by GKLINE
Anthony
I am sorry to be so late in responding to your post. But it has been a very busy weekend indeed.
We are in a two week "end of season" racing series and last weekend was a successful start (a Win) and then Sunday was a day for starting that "honey..... Can you do this?" list. And believe it, we had to also go tag a Christmas tree! Yes, I know, but it is a tradition.

As for my bladder situation............... I have a neo bladder. I also had a Dr. that did a great job making a bladder out of small intestine. But, it is not the perfect thing for everyone. Even Me. I manage everyday life just fine. But I do have an incontinence problem at night. I've tried everything, but I still have it!
But I am NOT complaining at all! I am active, and these small annoyances have become a source of comedy with my wife and I. We are just glad to have each other alive!
I am not the medical person on this site by any means. I am more of the court jester. This damn disease can really get you down and someone has to "keep your Mind" in the right place. I have seen people will themselves into sickness.
My job here is the comic relief.

I wish you the best in your recovery and decisions involving bc. Just dont forget that a positive outlook can make 50% of your recovery.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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3 years 2 months ago #49454 by OldEngineer
Anthony - thanks you and indeed I had not thought about that possibility; the "retail" price of anesthesia is indeed probably high but I get the "wholesale" price (if the insurance does not cover it) so that is manageable. It is probably a "phobia" as psychologists would describe it but I personally think it is more of a post-traumatic stress syndrome since the trauma I went through when I was nine years old is almost as vivid today as it was then - and that was 55 years ago. Some things one just does not forget. Anyway - you have a beautiful country, have been there several times on business, to Sydney and Canberra, never Brisbane but perhaps some time in the future. Thanks again and very best to you!

T1 high grade transcell diagnosed 8/14/2015
TURBT 8/21/2015, removed tumor (17mmX14mmX11mm)
Repeat TURBT performed 9/25/2015
Pathology Report: no residual cancer detected
BCG planned starting in October

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3 years 2 months ago #49449 by anthonyve
Well, I really hope it goes well for you.
I'm an Aussie, but from what I understand of the US system, if your insurer doesn't cover it, it will be very expensive, so I thought I'd mention something else.
I know this is a bit off the wall but have you considered hypnotherapy before your BCG treatment to address the underlying issue?
My wife is a clinical hypnotherapist and I've seen her achieve some remarkable results with similar - I guess one would call it a phobia.
She does quite a lot of work with doctors at a couple of major hospitals here in Brisbane, addressing patients with issues not dissimilar to yours and nearly always gets good results.
The thing is to check the quals and experience of the hypnotherapist.
Anyway, just thought I'd mention it, in case you have never considered it.
In any case, very best wishes indeed.
Cheers,
Anthony

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3 years 2 months ago #49448 by anthonyve
Hi George,
I've just recently been diagnosed with BC, and your comment was so uplifting and reassuring.
Thank you sooooo much.
I really needed to hear it.
Can I ask, with your bladder removal, which option did you go for.
I ask because whatever you chose, it's clearly not restricted you life, so I'd like to have it in the back of my mind, just in case.
Thanks again for such a reassuring and encouraging post.
Cheers,
Anthony

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3 years 2 months ago #49446 by OldEngineer
Anthony - thank you so much; indeed I take your point, but I am a victim of psychological distress from an early age; when I was nine years old, I had blood in my urine which turned out to be benign, but I had a cystoscopy which to be frank, left me in such pain and discomfort for almost two months that I never fully recovered psychologically. There are three parts of my body which I just have trouble with the doctors manipulating - the eyes are two of them, and you now know the third lol. Colon exam? No problem. Heart catheterization and stenting? No problem - four of those already inserted. But the urethra? Gah.... So I have spoken to my urologist and he will indeed put me under for each of the BCG treatments. I expect to have some interesting arguments with the insurance companies over this, but ultimately if they refuse to pay, I will pay out of pocket, it is that important to me.

I also discovered from the procedures I have been through that I appear to have some BPH because Flomax and Alfuzosin definitely make it easier to urinate, so that condition may also be contributing. Oh well, yet another lesson learned.

Anyway - thank you again for your input, I do genuinely appreciate it!

T1 high grade transcell diagnosed 8/14/2015
TURBT 8/21/2015, removed tumor (17mmX14mmX11mm)
Repeat TURBT performed 9/25/2015
Pathology Report: no residual cancer detected
BCG planned starting in October

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