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Just diagnosed

3 years 2 months ago - 3 years 2 months ago #51389 by Alan
That was exactly my DX 8 years ago. It is normal to worry. Everyone deals with this differently as I'll never forget the URO called my wife as a professional courtesy to see if she wanted to give me the not so good news (she works at the medium sized town hospital so she would see the guy on rare occasions as she worked in the labor and delivery area). She said nope, he is a big boy tell him direct and I appreciated the act. Hit me for a ton of bricks for about an hour. After I churned through it, two things hit me. We all will leave this earth sometime and if my time was to be sooner or later, so be it and move along-I don't mean to be morbid it is just a fact. So, I changed mentally to more of one day at a time and that is where I am at 8 years later. We always know many people with far worse situations: a good friend with a brain tumor with 2-3 months left. Another that broke his back two years ago and can hardly walk.

You are one of the fortunate people that should beat this and gone to a stronger, richer and more effective life because of what you have faced. BCG while not fun it is FAR better than the rigors of chemo.

It is also OK to feel mad or bad about this, it is also OK to vent. Post anytime, we will listen. And, you will be typing to someone else in several months helping them along!

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 #51388 by Lupenbill
Any advice on how to relax and put this in perspective would be helpful. I'm so worked up about this can't figure out how to relax with it and just do what I need to do.
Lupenbill

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3 years 2 months ago #51387 by Lupenbill
So just got back from the urologist and got the pathobiology report's it is a TA HG that's scary that means six weeks of BCG treatments I understand they're not that hard to deal with.then after three months he wants to do another biopsy to make sure there is nothing left. Feeling very defeated right now. I do know that it could've been worse. I also know this is something that is not life-threatening since it was caught extremely early.
Lupenbill
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3 years 2 months ago #51386 by heather79
That is great news, Lupenbill! We're almost on the same track, I had my second TURBT on 6/20/2016, doc said he got it all, and scraped a little deep to be make sure, so I'm stuck with an indwelling catheter for a few days which is making life interesting at work, to say the least. I'm hoping to get it out tomorrow with a trial void, because I'm already leaking a bit around the catheter. I'm on pyridium so it's a bright orange staining color (I hate the color orange! :laugh: ) But I'm hoping for an all clear report, though I might have to have a few cycles of BCG. My doctor gave me pictures of my tumor before removal. I found them strangely pretty. Keep yourself up!

Heather
Diagnosed 5/25/2016
First cysto and TURBT 5/23/2016
Nephrostomy placement 5/24/2016
Second cysto and TURBT 6/20/2016
Papillary urothelial carcinoma, mostly low grade
No stromal invasion, no metastasis
Original tumor size (by CT): 7.3x4.8x4.8

Heather
Dx 5/25/2016, First cysto and TURBT 5/23/2016, 2nd cysto and TURBT 6/20/2016, Original tumor size (by CT): 7.3 cm x 4.8 cm x 4.8 cm, BCG 8/31/2016-10/12/2016,
Cysto 11/15/2016: Recurrence :(, TURBT (#3) 12/5/2016, BCG x 3 weeks, off 1 week x 1 year (end Jan 2018)
Cysto 4/5/17: NED!!
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3 years 2 months ago #51385 by Lupenbill
It seems to be subsiding a bit. I have an appointment with the urologist today at 11:15 anyway. I will discuss this with him at that point. I have a feeling it's relatively normal from what I'm seeing and from what I'm being told this whole process has been extremely stressful. I am hoping for good news today we should get the lab results back.
Lupenbill
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3 years 2 months ago #51384 by Alan
Unless it is red blood (fresh) versus darker (usually meaning older) it is somewhat normal. I was warned by my URO on my second TURB that I would probably pass clots 10-14 days post. And, while it may look like a lot it usually isn't. If he hadn't warned me I would have freaked out. As always, you/we are paying for their expertise. For peace of mind you may still want to call the doctor or nurse especially if it si still fresh blood.

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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