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Just got the news, what can I expect?

3 years 6 months ago #48887 by MadLove
Dear Lisascop,

I was in the procedure room at the local urologist's office in January 2015 when the first cystoscopy was performed on my 51 year old husband. Seeing the tumor on the 60" flat screen while seated on the lounge chair in the local urologist's office was unexpected but that visualization "put a face" on the cancer and made it something concrete for me as a caregiver. We transferred to a bladder cancer specialist at Johns Hopkins and are now veterans of two TURBT's and the first of six weekly BCG treatments.

There was an interval of about six weeks between the cystoscopy with the local urologist and the initial TURBT with the bladder cancer specialist. In my husband's case, the specialist does not feel that time has any long term effect on his outcome (diagnosed with non-invasive CIS).

If possible, work with a major hospital and specialist that sees lots of bladder cancer specialists. As much possible, consider including your support system in your appointments. My husband has saved a lot of time in not having to remember and repeat information!

Best wishes!

Husband's journey:
01/2015 1st cystoscopy
03&04/2015 TURBTs-CIS
07/2015 Finished BCGx6
08/2015 biopsy-BENIGN!
10/2015 Finished BCGx3
12/2015 Cysto, redness
01/2016 TURBT, Benign
04/2016 Cysto
05/2016 Finished BCGx3
07&11/2016 Cysto's
1/2017 Finished BCGx3
2/2017 Cysto, redness
3/2017 TURBT, Cysto...

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3 years 6 months ago #48879 by raider
Keep us posted, I won't bore you with my story as you have plenty on your mind right now. I will look for your update and if I can provide insight/feedback that relates to what I have and went through I will let you know. Best wishes and keep us posted

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3 years 6 months ago - 3 years 6 months ago #48878 by Alan
Welcome but, sorry you had to be here. George is my local shrink (just teasing/joking as he has a wealth of info and insight keeping us focused). I want to stress what he stated on one of his posts. You want a URO that sees LOTS of bladder cancer as so many see mostly prostatic cases, so do check that out. I am not familiar with bladder cancer centers in Albuquerqe but if there is a major teaching hospital with a specialty in bladder-go for it! I was lucky that my local referral was outstanding (close to San Antonio). Should anything change after 7 years I am ready to go a major center-in my case MD Anderson.

Good luck and post away as someone is usually around within several hours responding with help even though we aren't doctors. We are just some that have "been there and done that".

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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3 years 6 months ago #48877 by GKLINE
Most of us have unusual stories as to our "First Time" cancer thing.

I was having my annual physical for my SCCA racing licence renewal and my Dr. was my same Dr I've had for 35 years. We always yuck it up as we've known each other so long, when the nurse came in and handed him the results of my urine test.
All laughing stopped and he turned serious and immediately scheduled an ultrasound for the next morning.
And the next day he said he was not waiting for the other test results to come back. He had made an appointment at the urologist for the following day.
My wife and I were ushered into a small room and the Dr came in and said "So, You have cancer."
Just like that my life changed.

Best of luck. Your life will change too. But I found so many good things during my treatment and recovery (like this site) that I cannot believe how my life changed for the better.

Very weird. But you find this an amazing journey.

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 6 months ago #48876 by lisascop
Thank you for your support. It's funny in a way, I moved my yearly physical up because I was having issues with my blood pressure, and I couldn't understand why they needed three urine samples and all that blood work. Weeks went by and my blood pressure is now under control. This is all very surreal to me, I was sitting at a slot machine (I live in Albuquerque, NM) and I thought it was my wife calling me to let me know that it was time to leave. It was my doctor, I remember thinking it was odd for her to call a patient on a sunday. We spoke for only a few minutes, it was the longest phone call of my life. She told me that cytology had examined three urine samples, taken over the course of several weeks. All of them contained cancerous cells, most likely from my bladder. She told me that she had scheduled a CT scan and a urologist, and she made sure that I understood that time was not my friend and delay was not a good idea. So I guess I am a little freaked out. I am lucky in a lot of ways, I may have caught it early, I have the Presbyterian health plan, I have a ton of leave, 45 weeks sick, 13 weeks vacation, 5 weeks of comp and 1 week of personal leave, and I have reached my retirement age. So I guess I need to calm down and see whats real. Thank you for your support.

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3 years 6 months ago #48873 by GKLINE
Sorry to welcome you here. But welcome anyway.
Your journey is just beginning.

But. And It's a BIG Butt
Slow DOWN!!! Breathe DEEP! AGAIN! ...... AGAIN!

Although I am NOT a Dr. I can relate to all of this. Because I was in your EXACT shoes Seven years ago. And there was no one to give me a clue. I have some clues for you.

You need to get a diagnosis. And the only way to diagnose bc is through a cystoscope.
Yup, they put a camera up there and have a look around. They may even let you watch in living color.
If they see tumors, you will need to get to a bladder cancer specialist. BC is a tricky little devil and it has a habit of coming back. So.... you need a specialist.
A Dr that has seen hundreds of cases. If you give your location here, I know someone can direct you to a bladder cancer hospital. This is important info.

After the scope, and IF they see anything there, you will have a Trans uterial resection of the bladder (we call it a TURB). This is a rather minor operation and is usually done in hospital and you will be put under. The cancer will be cut out and analysed in pathology to determine what type it is.
There will be another TURB in a few weeks to determine if they got it all.

So, there you have it. The start of bc. treatment.

From my experience;
Get to a Bladder cancer specialist. People here can help.
Follow the steps to recovery.
Don't freak out! Try not to anyway. I know it's hard.
If they caught it early... and it sounds as though they did, You will get through this.
We are not Dr's but we have been there and we are still here. I was diagnosed seven years ago and I have had my bladder removed.... And I am still here. I work at my auto dealership every day, race cars, golf, ski, and play a "Dirt Rotten Scoundral" on stage at the local summer theater. You will too.

I hope this helps. Now take another DEEP BREATH! Oh yeah!
Now.... Get out there and get rid of this crap!

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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