Need advice

7 months 2 weeks ago #59921 by mikequestions
Need advice was created by mikequestions
I was recently diagnosed with T1, high-grade bladder cancer. I just had turbt surgery, and the surgeon met with me post-op, about 10 days after the procedure. He said the cancer was "larger than he expected" with the original cystoscopy, and that he was not completely sure of the type of the cancer, and will need to do another another surgery to explore the base area, clean it up, and perform an additional biopsy to make sure it's not T2 cancer and in to the muscle layer. I'm scheduled for that surgery in about a week.

Even typing this is freaking me out all over again. My hands are shaking. Even though I've accepted this as "real" it seems strange that it's me and that I'm writing this.

I believe I fully understand the difference between T1 and T2, and what that means as far as treatment goes. It's not a rosy picture either way, and I'm braced for it (as much as I can be). The paths are pretty clearly defined.

The thing that I am not sure of, is if I will be able to continue work when my treatment (or bladder removal) is done. I'm 56 and a business owner, and I would like to continue working for a while if possible. I'm curious others have done this, or if I'm completely unrealistic with my outlook. I'm not ready to give up on life, and have no intention of being unable to live it. I have to be realistic though, and I'm scared as hell. Will I have to give up recreational activities? Travel? Your thoughts are appreciated.
Mike

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7 months 2 weeks ago - 7 months 2 weeks ago #59923 by Alan
Replied by Alan on topic Need advice
Welcome Mike,

I was in your shoes 12.5 years ago. The most important piece of advice I can give is take EVERYTHING one day at a time. I have to remind myself of that almost every day on many issues.

A few thoughts here. A second TURB is done very often. It is used as a safety and second check especially on large tumors, high grade tumors and when the doc simply wants to sure of staging. It is good medicine.

Also, have you been given the pathology report from your first TURB? You really don't know much until that is done. In rare circumstances posters have come back with even a no cancer as in your post the doc has some questions on "type" and a visual isn't always correct. It happened on my 1st TURB as my URO guessed it appeared to be low grade but, was wrong from my path report and he is skilled. Then you will have a plan of attack.

Easy for me to say but, lets see what stage this may be hoping for the best and prepared for the worst. Meaning it sounds like this is no more that stage 1 or 2. If stage 1 depends on the grade on treatment. From "waiting and watching" to BCG/immunotherapy. If 2, yes a cystectomy would be in play. On that subject it is still very treatable and beatable. I personally have 3 friends/aquaintenances that have had to go through this. They are all active golfers and doing well with one 7 years post, another 5 and yet a third at 3.

,As for work and recreation? You will be able to do it all! Keep asking away as you go.

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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7 months 2 weeks ago #59924 by sara.anne
Replied by sara.anne on topic Need advice
I can really understand all your concerns. There are so many questions for a patient with your diagnosis and the answers are not always clear. Your urologist seems to be doing exactly the right thing. A second TURB is always indicated in your situation...the difference between a diagnosis of T1 and T2 makes a major difference in the decisions about the type of treatment. Here is a reference to the diagnosis and treatment of this type of bladder cancer that may be more than you want to know:

www.ncbi.nlm.nih.gov/pmc/articles/PMC4910762/

As for what lies ahead, the answer to that is "it depends." First, Alan has great advice..take it one day at a time. Should the T1 diagnosis hold the most likely recommendation would be for BCG treatments and frequent monitoring. In this case of course you could continue working. There might be days when you would need to take a "sick day" or two, but for the most part life would go on as normal.

If the diagnosis switches to T2 the most likely recommendation would be for a radical cystectomy. This is major surgery with a fairly long recovery time, but after that you would most likely be able to resume life almost as before. We have members who have done car racing, scuba diving, and running businesses. The King of Norway has had a radical cystectomy and still "kings." It is way too early to overthink this possibility, but I did want to mention it.

Please let us know what the outcome of the second TURB is!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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7 months 2 weeks ago #59925 by mikequestions
Replied by mikequestions on topic Need advice
Alan,

Your advice is awesome, and extremely helpful. I cried all the way through reading it.
I've taken your advice and have emailed my urologist, and have requested the pathology report. It's not enough for me to know the laymen's description of this cancer. I need details in order to mentally process what is happening. I know my urologist is used to providing minimal details as to not overwhelm people, but I don't work that way - I need all of the pieces, and it's probably obvious by now - I usually like to see the big picture - way in to the future. All of my friends, family, you, Sara Anne, and my wife, keep telling me to take this one day at a time and to not look at the overall, daunting obstacles ahead. I'm having to learn that, and learn to be patient with myself and my situation. This is perhaps more difficult for me than dealing with the physical part.

Sara Anne,

Thank you for the link. I'll check it out.
Your words are kind and reassuring, and paint a picture of hope for me. I've read many of your posts in this forum, and so much appreciate what you're doing. I'm so grateful I found this place.
I'm emotionally raw right now, and everything seems surreal. I'm having to learn how to be in control, while being pretty out of control of my physical condition.

Thank you, my friends.
Mike

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7 months 2 weeks ago #59926 by Alan
Replied by Alan on topic Need advice
Mike,

You WILL come out of this mentally stronger and more effective in life!

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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7 months 2 weeks ago #59928 by DougG
Replied by DougG on topic Need advice
Mike,
One day at a time is great advice. I just want you to know that there are others on here who have taken many bumps in the road and are "keepin on truckin". My husband is a 19 year survivor of bladder cancer and still has a full, wonderful life. See a post from 3 years ago: FATHER OF THE BRIDE DANCE -- 15 YR BC SURVIVOR! I'm praying for successful results for you.
Anita

Anita
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Caregiver

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