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1 week 3 days ago #60156 by mikequestions
Hi everyone,
I just want to post an update of my current condition. As I mentioned previously, I had my 2nd TURBT, and all has been going pretty well with recovery, but I want to you know about specifics in case you're also going through this.

I've found that in general, the pain was much less with the second surgery, which was about 6 weeks ago. I've found that scabs still continue to come off and show up in my urine. Previous to this, I usually feel a little pain at the end of urination, and I'm assuming this is due to nerve endings being exposed as the scabs work loose. This pain usually resolves in a couple days, and has decreased with time.

I've found that spicy food (which I love) is not working out for me, and that I feel pain sometimes because of it. For this reason, I'm now going relatively bland with my cuisine (yuck).

I've pretty much eliminated alcohol from my diet since this diagnosis - not because my urologist recommended it, but simply because I figured I didn't need to tax my already taxed system. I'm not an alcoholic, but previous to this, I enjoyed a drink on some evenings. I'm wondering if you all have continued alcohol consumption during treatment, and if so, if you've had any negative affects from it.

My first BCG treatment is scheduled for next week.

Mentally, I'm still freaked out, but dealing with it better now. I'm typically very active with work and other activities, and have had to cut way back on this since the diagnosis. I've found that my body tells me what to do. I'm definitely not in the driver's seat, my bladder is. I'm able to walk 1-2 miles a day, but can't really do anything strenuous. I'm just now (within the last couple weeks) able to do some minor chores which involve bending, lifting, etc... I want to emphasize "minor".

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1 month 1 week ago #60009 by Alan
Mike,

The good news is that when the treatments are over.....and you are already past what is usually the worst part, you will come out stronger and more effective in your life. It is purely taking it one day at a time.

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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1 month 1 week ago #60008 by mikequestions

sara.anne wrote: So glad to hear the results, Mike.

Everyone handles such a diagnosis differently. Some patients do not want to talk about it AT ALL. Others find it an opportunity, as you did, to reach out in love to those close to them. I think that is the best approach rather than hold it all in where it becomes a worrisome poison. When I was diagnosed I knew very little about bladder cancer (used to joke that I didn't even know I had one!) Felt that by sharing my experience perhaps others would recognize the symptoms and get treatment earlier.

Emotionally, it was difficult. When both my urologist and primary care told me that they "thought" I was depressed and perhaps needed treatment, I became very angry. Told myself (and them) that I had every right to be depressed...it was a natural reaction, thank you very much...

Now 12 years later I am still cancer-free. You can do this too!!

Sara Anne


Hi Sara Anne,

Thanks for your thoughts.

Regarding "Talking about it", I'd like to clarify that I'm generally pretty introverted. I'm not the social media type, at all. I despise the hateful rants that are often associated with Facebook and Twitter, and would never think of going public with my cancer information on such a platform. If I wasn't relatively confident of the anonymity in posting here, I wouldn't do it. Also, I'm not confident my clientele and work associates would be judgement-free, so I'm careful about who I share private information with. It's a cruel world in many respects.

Looking deeper in to the concept of social media - Perhaps you could say that I'm too proud to receive sympathy from everyone I know. That, or maybe I'd just rather receive emotional support from people I know I can trust. Whatever. I obviously have found some useful information and support from this forum, and you. I didn't know I needed it until I started reading many of the accounts of personal struggles here. This is why I decided to share mine. Maybe somebody else can glean something useful from my experience. I hope so. I hope I can pay it forward. It's what makes us uniquely human.

Pandemic. Political strife. Cancer. It's a horrible year. It's also one of the most enlightening times of my life - A time of new awareness and hope. We so much need to learn to be better people. I'm learning.
The physical part of this is the easy part.

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1 month 1 week ago #60007 by sara.anne
So glad to hear the results, Mike.

Everyone handles such a diagnosis differently. Some patients do not want to talk about it AT ALL. Others find it an opportunity, as you did, to reach out in love to those close to them. I think that is the best approach rather than hold it all in where it becomes a worrisome poison. When I was diagnosed I knew very little about bladder cancer (used to joke that I didn't even know I had one!) Felt that by sharing my experience perhaps others would recognize the symptoms and get treatment earlier.

Emotionally, it was difficult. When both my urologist and primary care told me that they "thought" I was depressed and perhaps needed treatment, I became very angry. Told myself (and them) that I had every right to be depressed...it was a natural reaction, thank you very much...

Now 12 years later I am still cancer-free. You can do this too!!

Sara Anne

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

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1 month 1 week ago - 1 month 1 week ago #60006 by mikequestions
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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1 month 1 week ago #60005 by mikequestions
Anita,
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.

Mike

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