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Low Grade First Diagnosis - Second Found after 15 months

4 days 4 hours ago #56861 by iXanadu
jchammond,

If lack of control is an issue-I would suggest that you consider listening to or reading a book on mindfulness. Quite by accident, not understanding what mindfulness was, I found a book entitled “the untethered soul“ thinking it was a mindset book. Five minutes in I realized that it was anything but, however subject matter has changed my life in those around me. What I learned from this book, and other readings and listenings on mindfulness has enabled me to live in the now instead of the past that I cannot change or the future that may never arrive in the same fashion that my mind makes it out to be.

This allows me to always be in control. It was my mind that was out of control, not the circumstances around me. Now that my mind has been subordinated to me-I am very very free. Go to Audible, get the book, and give it a listen. I hope that it is as life-changing for you as for me.

1/1/2019 Happy New Year: What is that red tint in the toilet
1/2/2019 Primary DR - might be first signs of BC
1/9/2019 CT Scan, Urine Culture, PSA test - ALL CLEAR
1/13/2019 Cystoscopy show what looks like Papillary
2/1/2019 TURBT
2/5/2019 Clots and blood clog urethra go to ER
2/7/2019 DX: HG...

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4 days 12 hours ago #56857 by jchammond
Alan,

Thank you for your response. This is two in 15 months. Of course my Grandpa had this for 20 years before at 90 he did anything about it. I am just not that attached to my bladder to do this every year. The testing sucks, the only real source of info I have gotten is here and my pathology report. I think I am frustrated with the whole process!!

My surgery was rescheduled due to a UTI.. yet no antibiotics. Doctor's staff is trying my nerves ☺

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4 days 20 hours ago - 4 days 20 hours ago #56856 by Alan
Take the deep breath. "Non-invasive low-grade papillary urothelia carcinoma with no muscularias propria", if it has to be bladder cancer that is the best. Tumors do not grow from stage 0 or 1 in a week. Let's wait and see what the next TURB shows. A second opinion often confirms the first diagnosis. It is good for peace of mind. You are doing what you can do and it is by the book and the U of M is also an excellent center.

The cancer DX is a shock to everyone. This sounds like a cliche but, it has happened and we must go on and attack. We are here for you and am confident in 3-6 months you will be helping others get through this. Keep in touch!

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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4 days 21 hours ago #56855 by jchammond
iXanadu-
I am doing what I can to remain strong - a lot of crying in the bathroom and in my office with the door closed. My worker-bees have been my super strength reminding me that I don't "fight like a girl". My kids and husband are my strength and keep telling me it's going to be fine. My husband has been there for every one of these picture parties with my bladder (every 3 months!)


Thank you for your thoughtful response - I am still having my pitty party but will step up to the podium and fight and be strong. We are getting a second opinion after this next TURBT and based on those results, I want to discuss with my doctors removing my bladder. Non-invasive low-grade papillary urothelia carcinoma with no muscularias propria included - needs to go bye bye!

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4 days 21 hours ago #56854 by jchammond
Anita,

Thank you - so glad to hear your husband is doing well. My problem is I don't do well when I am not in control so being at the mercy of cancer frightens me deeply. My TURBT is postponed for a week as my urologist did several tests of my urine and detected a UTI. So now antibiotics and the waiting game. He is a great doctor but I have lost patience with his staff.

Also have decided to go to U of M for second opinion after this next rodeo. If anyone would bother asking me what I want, I would ask for my bladder to be removed. I am very black and white. Cancer - you need to go!


Jchammond

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6 days 8 hours ago #56840 by iXanadu
Jchammond,

You are in our thoughts and prayers. We are with you in this. Be blessed and be strong. This may be inconvenient but it does not have to be life threatening - I have to reassure my wife and kids frequently. It’s hard being the strong one when you don’t feel strong - but you can do it. Be strong for yourself and the family will follow.

1/1/2019 Happy New Year: What is that red tint in the toilet
1/2/2019 Primary DR - might be first signs of BC
1/9/2019 CT Scan, Urine Culture, PSA test - ALL CLEAR
1/13/2019 Cystoscopy show what looks like Papillary
2/1/2019 TURBT
2/5/2019 Clots and blood clog urethra go to ER
2/7/2019 DX: HG...
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