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My Dad had just recently been diagnosed.

6 years 7 months ago #41828 by upnorth
Carol,

Wow that is quite the roller coaster ride. But it sounds like things are going in you fathers favor. It's always a good idea to get a copy of the reports. That way you can always come here, or go over to the American Cancer site to get information on how to read the reports. That can really help your mind rest, when you know what is going on first hand.

Now we just have to wait for May 17th to get the rest of the story.


Age 51
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
"Please don't cry because it is over..... Smile because it happened!" {Dr. Seuss} :)
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6 years 7 months ago #41827 by mmc
Wow! Sounds like good news to me but it sure took the long way around! :)

I hope everything is ok. Glad you got the pathology report. When you read it was it all confusing? Did it indicate that there were good margins? I wonder why there was so much confusion in the first place.

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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6 years 7 months ago #41826 by CatherineH
My goodness... what a roller coaster ride you have been on. I wish your Dad the best outcome on his path report and whatever procedure he needs as a result. I know this is truly a family affair and my heart goes out to you all while you await the results.

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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6 years 7 months ago #41825 by scjabaldi
I thought I better get on here and give an update. So much has changed in the last week and a half. I'm going to back up just a little bit so it doesn't seem so confusing.

My Dad had his 2nd tumor resection on March 12th trying to determine if the cancer was in the muscle since the first pathology sample didn't have muscle tissue to make this determination. When they got in there on March 12th the tumors had regrown in their original site which indicated to Dr. Bullock that Dr. Stokes either didn't get it all the first time or it was that aggressive and grew back.

Dad got a call from Dr. Bullock on March 21st with the pathology results and he told Dad that the cancer had definitely invaded the muscle and the 3 other sites that he had been suspicious of Carcinoma In Situ had tested positive for cancer and we had no option but to remove the bladder. Surgery was then scheduled for April 12th with April 6th for Pre-Op and Surger Consult with Dr. Bullock, Pre-Op scheduled first.

When we got in the Surgery Consult with Dr. Bullock he pulled up Dad's chart and started reading from the pathology report, this is where we get confused, he starts telling us that the cancer has NOT invaded the muscle that it is adjacent to the muscle and the 3 other spots that had been biopsied (the ones he felt was suspicious for Carcinoma In Situ) all came back no malignancies. For 2 weeks my Dad has been so upset and down in the dumps and in a matter of seconds we hear the opposite of what he had been told on the phone. I was so confused I asked Dr. Bullock 3 or 4 times to make sure that he was telling us that it had NOT invaded the muscle at this point. I had been freaking out worrying about how long it had been in the muscle and if it had spread to the other organs already and just really thinking the worst.

When Dr. bullock looked at the surgery schedule and realized that dad was already on the schedule he started talking about the surgery. What he wanted to do was to do a cystoscope when they first got into the OR and see if he saw any obvious tumor regrowth, if there was obvious tumor they would remove the scope and transition to the full bladder removal. As he was looking at the schedule he realized that they had scheduled the surgery wrong. Dad has said all along that he wants the Neobladder but they had him scheduled to get the Urostomy bag after the bladder was removed. So it was quickly decided that they wouldn't be able to remove the bladder on April 12th if necessary, so what Dr. Bullock decided was that he would do a cystoscope in the office on April 6th and if there was obvious tumor regrowth we would cancel the OR time on April 12th and just reschedule the bladder removal on a different day. When he got in the bladder in the office he found 3 different sites that he was suspicious of tumor regrowth but no obvious tumor, one of them being in the middle of one of the original tumor sites. He decided at that point he would like to resect those sites one last time to see what pathology tells us. We went back April 12th, since we had the OR time, and Dr. Bullock did a 3rd resection. He said that Dad probably wouldn't have to go home with a catheter because it would be a superficial resection. Well we got our hopes up too much on that one. Dad did end up coming home with the catheter again because they have resected the original tumor site so many times and had to go so deep that the bladder is very thin there. Dr. Bullock said the chance of rupturing his bladder was too high if he didn't have the catheter for 4 or 5 days to allow the resection sites to heal over. Reports from Mom says that they have figured out how to strap the leg back on him and he's not having as much discomfort as he did with the past catheters. :)

SO ONCE AGAIN WE WAIT!

If pathology comes back showing tumor, we already have another surgery date for May 17th, a little farther out than I would like, but I feel we have a little more time since it hadn't invaded the muscle as of March 12th. I got a copy of pathology so I could read for myself what the truth was. I work with medical records and had to see the documentation before I could comprehend what was real at this point. My dad has also now requested that all his reports be sent to his house, partially because he knows I like to see it all.

If pathology comes back showing no tumor we will be transitioning to the BCG treatments back home with Dr. Stokes.

I really hope this didn't come across as me talking bad about Dr. Bullock because that's not what I meant at all. I just wanted to update everyone on the change of events. He is an awesome Dr. and we all love him and trust what he is doing, not sure how the information got so messed up on the pathology, but I am a strong believer that things happen for a reason. I told Dad that it wasn't meant for him to get his bladder out yet so we are thankful that everything was scheduled wrong because otherwise we would have went ahead with the bladder removal and he has been given another chance to save his bladder. :)

Quite the change of events in the last few visits. I will definitely repost and let you know what the pathology results are.

Thank you all for all of your information, this site has been such an amazing way for me to deal with Dad's cancer diagnosis. Hearing all of your words of encouragement and your experiences has gave me comfort in knowing what to expect. I can't even begin to tell you how much I really appreciate it.

I will talk to you soon!
Carol

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6 years 8 months ago #41675 by GKLINE
Carol
I think EVERY one of us has had the same questions when we were diagnosed. They are perfect questions.
While in the hospital, don't worry about your father wanting to eat. I was in for 8 days and I never really had the urge to eat. As I was walking out the door of my room to go home they brought me my first meal...... Ahem! I passed. I did lose 24 pounds and that wasn't a bad thing.
I was 53 at the time of surgery and I had the same question about erectile disfunction. I had nerve sparing neobladder surgery and they always take the prostate. I had about a year to 18 months of time to get that working. I didn't gain full confidence until the 2 year mark. Each time I began to feel bad about this, my wife assured me it was better to have me alive. She was a great partener through all of this.

Mike and I are probably the norm when it comes to being continent. I was fully continent during the daytime by my 4th month. But nightime is another thing. I have to get up 2 times during the night, most nights. Since there is no "normal Urge" sometimes, during a deep sleep, I lose a little control. But.... That is the small price we pay for being alive.

The last thing I can say is "Thanks for finding us" I wish I had found these guys before my surgery. They make a very scarey thing; bearable.
This is a BIG Time deal. But it is merely a door that your family will pass through to being cancer free. My family found this experience to be both freightening and Bonding. We were all kinda just going along with the day to day things and suddenly.... Wham! cancer. But the whole experience made us all stop and realize we were on autopilot. Just cruising. As a group we all came together and fought this disease. And we are better people for it.

I hope everything works as well for you and your family. I will keep you in our prayers.

Now...... Lets get this show on the road!

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 8 months ago #41674 by Babsiebob
Welcome Carol
Sorry you have to be here but as the rest of us have found out it is not impossible and your dad will come through this beast with flying colors.Once again I have to say Mike what a great guy you are and such a comforting and imformitive help you are to all of us.
Barbara

Dx 4-28-08
pT3a no mo
Rc with Ileal Conduit on 6-09-08
2nd surgery on 6-27-09 for ureter leak
Renal failure on 7-01-09 nephy tube and then stent on 7-09-09
so far so good

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