Here I Go Again

6 years 10 months ago - 6 years 10 months ago #46807 by globalguy
Here I Go Again was created by globalguy
It's been some time since I last contributed (Mike's passing). Boy I wish he were here now.

I've recently had my regular screening. Cystoscopy, all looked normal, cytology, positive for malignancy, TCC once again. My doctor is puzzled and he leads the MGH Genitourinary Dept. TURBT scheduled 08-Sept. I have all the confidence in the world in my doctor. We've discussed, at a very high level, having to undertake a more radical approach.

I'm not one to jump into panic mode and business is keeping me busy, however, it's there, like a steady drumbeat, in the back of my mind. Waking up at 1:00a or 2:00a and staying up all night. I haven't told my wife yet as she's holding vigil, as her mother is in final stage of Alzheimer's. I can't throw this on her now, so here I am unloading to those who have supported me in the past.

Thanks for reading and allowing me to vent.

JoeP

Joe P

Diagnosed: 01/2012 - TCC CIS
All Clear: 06/2012
Diagnosed (Again): 02/04/2013 - TCC CIS
All Clear (Again): 05/03/2013
Diagnosed Yet Again 10/15/2014 - RCC
Working It
Mass General Hospital, Boston, MA.

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6 years 10 months ago #46808 by AnneH
Replied by AnneH on topic Here I Go Again
So sorry to hear the news, of course you are understandably upset, this is a lot to absorb. I'm going to state what they say here often on this site, get a second opinion. You can have all the confidence in the world with your doctor but for any radical procedure you should get another view.

It is very sweet of you to protect your wife from the latest news, but I know I would want my husband to tell me, even if I had several issues going on in my life.

Good luck and vent all you want, we are here to listen!!

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6 years 10 months ago #46810 by sara.anne
Replied by sara.anne on topic Here I Go Again
Joe, so sorry that you have having to go through this. One thing to remember is that urine cytology has one big negative....lots of false positives. Please think of this fact at 1 a.m.!!

Your urologist IS doing exactly what he should be and the next TURB should give you some answers.

Will keep my fingers crossed and think good thoughts!!

Sara Anne

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

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6 years 10 months ago #46814 by globalguy
Replied by globalguy on topic Here I Go Again
Thank you and I understand. I also had a positive result with FISH as well. Dana Farber also agrees that planned protocol is in line with their interpretation of next steps.

So I will keep the false positive possibility in the back of my mind, while up during the early morning hours. On a positive note, I'm seeing some very good documentaries ;-)

Joe P

Diagnosed: 01/2012 - TCC CIS
All Clear: 06/2012
Diagnosed (Again): 02/04/2013 - TCC CIS
All Clear (Again): 05/03/2013
Diagnosed Yet Again 10/15/2014 - RCC
Working It
Mass General Hospital, Boston, MA.

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6 years 9 months ago #46821 by GKLINE
Replied by GKLINE on topic Here I Go Again
Joe
Up at night? Do you really think that your wife doesn't suspect a thing? Don't bet on it!
I know she has a lot going on (lost my mom to a 10 year Alzheimer's battle in March) but your wife is "YOUR TEAM"
You sure wouldn't want to hide from your quarterback that the left guard was not there because he had a few other worries on his mind, would you?

But, on to other things.
From your travels on this site, you know that this bc thing is a process and the bastard "comes back!" And I will quote Mike here "Always get a second opinion!"
I am not trying to diss your present Dr. because he is following the normal procedures. A TURB is the natural next step and that will tell you A LOT.
I know it is very easy for me to say "sleep well" and I know that will not be easy to do. I KNOW how to stay awake over "things" too.

So, for now, we'll follow protocol. Do the TURB. Get the results. and then make a Plan.

I know this is impossible to do............ breath and relax.
Easy for me to say.

Good luck
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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6 years 9 months ago #46822 by globalguy
Replied by globalguy on topic Here I Go Again
George, the football analogy resonates and thanks. You're absolutely correct. I have taken Mike's mantra to heart and have sought a 2nd opinion. Both teams are aligned with the moving forward plan and will reconvene based on TURB results.

Since I first posted, my wife has discovered my "situation" due to the arrival of TURB schedule and lab requests. Not a good scene at the homestead that evening. Now that things have calmed I've requested that she focus on her mom and family.

That aside, I'm dealing with things and awaiting 08-Sept. Results, I'm sure the following week.

You're a good man, George and I've always appreciated your advise and candor. I'll be sure to keep all apprised, once we have real news.

Joe

Joe P

Diagnosed: 01/2012 - TCC CIS
All Clear: 06/2012
Diagnosed (Again): 02/04/2013 - TCC CIS
All Clear (Again): 05/03/2013
Diagnosed Yet Again 10/15/2014 - RCC
Working It
Mass General Hospital, Boston, MA.

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