30/male, dome T1b with CIS

5 years 8 months ago - 5 years 8 months ago #49180 by murray55
30/male, dome T1b with CIS was created by murray55

I just got diagnosed last week at mayo. Got TURBT, pathology ruled it was a T1b with adjacent CIS (1 location for tumor and it's in the dome). MRI came back for negative for spreading any where else, also no sign of muscle invasion. They recommended in 6 weeks to do another TURBT and if it returned with T1 or higher to get RC including prostate removal, but if lower than t1 to do BCG.

I'm freaking out here, I just got married last year and had my first child 1 month ago.

I know mayo is top notch but I'm a very thorough person and I feel i should get a second (or even third opinion). I'm willing to go anywhere in the country (i'm in MN). Does anyone have any recommendations for doctors/surgeons who have dealt with young people with T1 bladder cancer? Especially if they do partial bladder removal/prostate/nerve sparing.

Thank you for your help!

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5 years 8 months ago #49182 by sara.anne
Replied by sara.anne on topic 30/male, dome T1b with CIS
So sorry to hear about your diagnosis. Everyone here is either a patient or a caregiver, so you have lots of friends.

First, you are in an excellent place for diagnosis and treatment. They are "right on" in recommending a second TURB. Too often this is not done. The first time the uro takes samples where he thinks the tumors are. The second time, with results from the first go-round in hand, he has a much better idea of where the problem sites might be. My diagnosis after the second TURB was quite a bit different.

If you feel that you really need a second opinion, Johns-Hopkins will do a review of the pathology (slides and diagnosis) by mail. Besides Mayo, other top bladder cancer centers include Memorial Sloan Ksttering in NYC, USC in Los Angeles, and MD Anderson in Houston.

Partial cystectomy is not often used in bladder cancer cases, because the entire bladder is at risk of recurring tumors. It is occasionally used in a rare type of bladder cancer, adenocarcinoma. I am not a physician, but I strongly doubt that it would ever be considered with the presence of CIS....which is sort of like a rash on the bladder lining.

I do know that, should it come to cystectomy, it is not the end of the world. We have members here who drive race cars, go scuba diving, and yes, have satisfying sex lives with no bladder.

Don't blame you for freaking out. Been there, done that. I remember coming home from my diagnosis appointment and thinking (calmly, I then thought) "well, now I know what I will die of." My internist suggested that I "might be depressed." That really made me angry...I HAD EVERY RIGHT TO BE DEPRESSED. Well, 7 years later, no recurrences (yet), and doing great.

You will get through this, one way or another.

Sara Anne

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

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5 years 8 months ago #49184 by GKLINE
Replied by GKLINE on topic 30/male, dome T1b with CIS
Well Murray
You are Me! The me from seven years ago,that is.
I came to this site and asked the same questions and had the same fears.
I am sorry that you are here. And I am so glad you are here. We are you...... Just a little further down the road.

My hope for you is that your second TURB shows clean margins and you can have BCG treatments and stay cancer free. I will say a prayer for this.

But the next step is bladder removal and prostrate removal with "nerve sparing" procedure. You will have no more children( although I have heard of some who had their super put in a bank and used that) as you will have no sperm.. But nerve sparing is a way of allowing you to have a functioning penis, after a while.
This worked for me, but took a year to return. And my wife was patient.
Just to let you know....... This is NOT the end of life. If caught early, and you have a good Dr you will live a long life and....... You will not die from bc......... Because you will not have a bladder to get cancer..

I am not trying to be glib about this......right now you are probably freeking out.. That is normal. I FREAKED OUT BIG TIME. But I also found strength in my wife and children. They were "on my team" BIG TIME. We talked about everything. We became the Kline Team for the cure.
And we had to go All The Way. I was like you. Young(50)(that will seem young in a few years) had a big job, had three young women, and a great wife. I was extremely active; skier,golfer,raced sports cars and loved life.. Went in for a physical and...... BOOM! You have cancer!
In three months I had two TURBs and bladder removal.
So now, seven years later....... Still cancer free. Still skiing, golfing, and driving my sports car (hoping to take a regional championship!
Please follow the Dr advice. Make sure he is following an aggressive protocol ..... Have your "Team" behind, next to, and in front of you.. Stay healthy. Keep the Faith. And fight like hell.!
We are only patients and care givers here..... Not Drs
But we know how you feel.
And remember to start living your life. It will change. But you WILL have a life. I promise.

George Kline
Ps..... By the way, I live in upstate NY, but I am answering this from Venice Italy. I have never been overseas before. So a lot of us here are proof that life does indeed go on..
My wife even said last night was pretty special too. If you are worried about that.

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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5 years 8 months ago #49188 by Martin47
Replied by Martin47 on topic 30/male, dome T1b with CIS
Dear 30/male, dome T1b with CIS,

You must get a 2nd opinion, as I did. I was floored just like you, although I am twice plus 18 years older than you, but who is not afraid of having to die? When I got my second opinion, I was relieved, because that Urologist doctor told me exactly the same as the first said, so I knew, to stay with that doctor. And I am on the mend. BCG (eight applications)preceded by an operation of the bladder and eight days in the hospital (!) did the trick. Thanks to the two Urologist who cared for me, and help from Above, Bless, Martin47

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5 years 8 months ago #49198 by MadLove
Replied by MadLove on topic 30/male, dome T1b with CIS
Dear Murray55,

Congratulations on your recent marriage and birth of your first child! I hope you are able to fully celebrate this joyful events as you continue your research into cancer treatment.

My husband receives care from an exceptional bladder cancer specialist at Johns Hopkins. We may be biased (he does refer to my 52 year old spouse as young), but we consider him a rock star!

Switching from a local urologist to a specialist a quick 90 miles from home was the right thing for my family. We have full confidence in the excellence of care as well as the benefit of relief from the persistent question of is everything being done that can be done?

Seeking a second opinion was done based on posting forums that was the right thing to do, and I strongly concur with that advice.

Best wishes to you and your family as you continue with your research and cancer care.


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 due 9/2017

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