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Back AGAIN!

7 years 3 months ago #39111 by GKLINE
I have this picture locked in my brain. I had just regained some sense of conciousness(no comments about my REAL lack of conciousness) after my second TURB. My wife was sitting next to the bed and she said "Would you like to know what the Dr. said?"
I was absolutly sure the Dr. was going to give me a clean bill of health and send me on my merry way.
"He said, We have to come back in 5 days for a Radical Cystectomy because he didn't like the way things look inside the bladder."
I was Crushed. I was Sad. I was Mad. I was Pissed. I was Flabbergasted! I was vincable ( as opposed to being Invincable)

The one thing about this crappy disease that really pisses me off is........... It never ends. We just have to follow the protocal and get on with it. If the next step is a RC; That is the next step. We certainly feel your pain (really, we've really felt it) and know it is OK to feel all sorts of emotions. But, the next step is.... The next step.

Thanks for filling us in. This is a great site to ramble.... we understand.

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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7 years 3 months ago #39107 by CatherineH
Your observation about how abused his bladder looks now makes me realize how much the bladder becomes a warzone as we battle to protect it from takeover by a very insidious enemy. That is why we celebrate each and every victory with such gusto! I so hope things go your way again... I will be keeping Eric and you in my closest thoughts.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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7 years 3 months ago #39106 by TheWifeAgain
Thanks Anita and Catherine

The old waiting game. I thought maybe someone here had a crystal ball to guide me. Patricia is about as magical as they come but I don't think even she can see into the future.

Don't get me wrong. I am grateful for the few times he had a clear cysto and that so far he has been able to save his bladder. I've seen many people here in much worse scenarios as we are in. Even though I don't post often I do read the forum often and think of many of the posters here. There are so many amazing people who inspire me to take things day by day.

Eric felt so confident that this was behind him that he got a new job 2 months ago and left his previous job of 10 years. It was a huge decision for him. I can only hope his new employer will be as understanding as his past employer. Of course with the new job came a new truck payment.... :woohoo:

Catherine you hit the nail on the head regarding the doc "deviating" from the normal routine. Having known him for 5+ years now I can tell when he is concerned and when he is happy. I also in the room during the procedure and saw the monitor during the cysto and there were significant changes that have not been there before. There were bright red bloody areas that were much larger than any inflamation I have seen in the past. Most times there would be inflamation, it would be after a series of BCG. The areas this time looked so different than BCG inflamation ever looked.

I'm also amazed at how tough the bladder is. The inside of his bladder looks used and abused compared to the very first images we got when it was pink and smooth.

Age 53 Currently
Bladder Cancer Diagnosis October 2006 T1G3
2011 Finally made it 6 month between Cystos
8/22/2011 Cysto in the OR
(BCG and BCG Maintenance over the years)
Graduated to yearly Cystos
Tumor found at first one year Cysto - TURBT 4/26/2013
Kidney pain - CT scan 5/1/2013

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7 years 3 months ago #39105 by CatherineH
So sorry that his BC is back again. I can't imagine how crushed you both are by this recent development, especially in light of how healthy your husband is otherwise. It's hard to accept that our bodies betray us in such a devastating way. It is scary when the doctor deviates so sharply from the normal routine so I definitely understand your "nervous energy." I wouldn't venture a guess as to where things are headed except to say that I hope there is some encouraging news on that path report for treatment options.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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7 years 3 months ago #39099 by DougG
How disappointing for both of you....nervous energy...been there, done that, continue to do that...not fun. Prayers are with you. I don't have a clue to tell you how this will play out. Like you said, your husband's vitals are EXCELLENT. (((Hugs)))) to you both.

Anita

Anita
Forum Moderator
Caregiver

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7 years 3 months ago - 7 years 3 months ago #39098 by TheWifeAgain
Well I am back again. I guess we all know what that means.

I don't even know where I left off with my husband's never ending Bladder Cancer situation. The point we are at right now is he had finally made it to the 6 month Cystoscopy check up for the first time in 5 years. I tried to count the number if BCG and BCG w/interferon treatments and I cannot come up with an exact number but I can without doubt say that the number is over 25. I wish I had kept a better ongoing treatment journal as religiously as I did at the start of the journey. There has also been 3 TURB's, a zillion cysto's (some with biopsies and some with biopsies with cauterization done as office procedures) and we can toss in a treatment or two of Mitomycin which he can never have again due to severe inflamatory reaction. Whew!

This past Thursday at his 6 month Cysto there were very obvious bight red inflamed areas. Within the first 45 seconds our doctor said he needed to go to the OR for Cysto with biopsy. I am assuming he didn't like the look of the areas or it was more complicated than what we have seen in prior office cystos because usually if there is something questionable he will do the biopsy right then and there. He also said he wanted it done ASAP so 4 days later which brought is to today he had the procedure.

The doctor spoke to me after surgery and said that because some of the areas were large and he wanted to make sure he went as deep as possible there was quite a bit of bleeding and so hubby would be coming home with a catheter.

This really hit him hard today. He thought all of this was behind him and that he would be in and out today and back to work tomorrow. He went from sad to mad when he woke up and realized that he feels like he is starting this whole journey from step one. The one thing he does have on his side is he is healthy as a horse! No daily meds and a heart rate of 48 and blood pressure of 110/70. I can only dream of having such perfect vitals.

Any advice or similar stories out there? I know we have to wait for the pathology report but does anyone have an opinion of how this will play out?

Thanks for listening. I am just rambling and full of nervous energy.

Age 53 Currently
Bladder Cancer Diagnosis October 2006 T1G3
2011 Finally made it 6 month between Cystos
8/22/2011 Cysto in the OR
(BCG and BCG Maintenance over the years)
Graduated to yearly Cystos
Tumor found at first one year Cysto - TURBT 4/26/2013
Kidney pain - CT scan 5/1/2013

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