Need advice

3 years 1 month ago - 3 years 1 month ago #60006 by mikequestions
Replied by mikequestions on topic Need advice
Hi All,

I've read a lot of information on the internet, which has been both informative and a burden. Though I think it was necessary for me to do the research, I think it also scared the shit out of me, and I'm not sure it was the best thing to do to keep me from freaking out about my condition. I just wanted to clarify that before reporting on my condition.

Since I last posted, I received the pathology report, and as expected, it was "carcinoma in situ", and is agressive.

A week and a half ago, I had the follow-up surgery, and since, I've had the follow-up visit with my urologist to find out the prognosis. This was by far the scariest day I've ever had in my life, and I was physically sick with anxiety before the appointment.

The surgery went well, and it turned out to be Type 1 and only in to the 1st layer of the bladder wall. My urologist is confident he removed it all, and he said it cleaned up really well. I'm scheduled for BCG treatments in about 6 weeks. This is the best possible prognosis I could have received, and I'm as happy as a person can be with bladder cancer.

Post-surgery has been much easier than after the first surgery. Way less pain - way less bleeding. I was very surprised that it was not as brutal as the first surgery. I've been getting by with Oxybutinin and Tylenol, in the evenings only. Sometimes I don't even need the Tylenol.

I want to give you a report on my emotional condition - because I think that a lot of people leave that part out when posting here. Though it's difficult to accurately convey how stressed and emotional I have been throughout this, I can say that when I was awakened from surgery, the nurse was wiping tears from my eyes. I had no idea why I had been crying, but I think the anesthesia takes away all barriers that you put up, and leaves you stripped down to your core. Later that same day, I had to call all of my family members and dear friends, and let them know that I was OK and that the cancer was Type 1, and that the path was curative. I could not hold it together for many of those conversations, and freely cried and didn't care. It has been a huge emotional relief for me, and I'm not afraid (as a man) to let it all go, and let it all show. All of that toughness means nothing to me now. This disease lets you know you're vulnerable, whether you think you are, or not. There's no hiding. There's no need for a front.

I'm learning. Learning who really loves me. Learning about myself. Learning about patience. Learning to be grateful for EVERYTHING that is good in my life. I'd like to say that I'm learning about God, but I'm not sure there is a God. I hope there is, but I'm done exploring religion and having any sort of faith in institutions. I pray, but have no idea if anyone is listening. It's OK. It has to be OK.

I'm looking forward to the BCG treatments and getting rid of this cancer. I'm TOTALLY determined and confident I'll beat this. Still scared - but not AS scared. If fear is a sign of a healthy mind, then I'm as healthy as I can be!

My people have been so supportive. I had no idea they would be behind me as much as they have been. Pushing me, making me cry, making me laugh out loud. I love them SO much. I want to be like that.

I'll be back to report about the success of my BCG treatments.

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3 years 1 month ago #60005 by mikequestions
Replied by mikequestions on topic Need advice
Thanks for the post and especially for the encouragement. I checked out the "Father of the Bride" thread, and it's truly inspiring.

I'm going to follow up in the next post.


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3 years 2 months ago #59928 by DougG
Replied by DougG on topic Need advice
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.

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3 years 2 months ago #59926 by Alan
Replied by Alan on topic Need advice

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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3 years 2 months ago #59925 by mikequestions
Replied by mikequestions on topic Need advice

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.

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3 years 2 months 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:

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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