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So very glad I found this place

2 years 11 months ago - 2 years 11 months ago #50423 by Shelbel
Thank you, Gkline, I appreciate that! :)

Because I said I would, here's an update--although it is neither terribly informative, nor promising.

My appointment was with a Dr Brown from OSU yesterday. Very nice man. He seemed very concerned and wants me in for testing ASAP--which translates into a CT next week and the cysto the week after. I had been hoping he'd take pity on me and do it yesterday, but they were still crazy busy from the holidays.

He did write a script for something to help with symptoms that is supposed to work better than my OTC stuff. I'm looking forward to that.

The only odd, not-so-great thing that happened was the girl doing the post-void bladder scan. Empty, empty, not empty. Over and over. I don't do these, but I see them done all the time, and this poor girl was getting frustrated. I asked what she was doing and she told me she couldn't get a good average because my readings were "all over the place". The place giving her the most difficulty was the place where I'm feeling the most pain. She must have taken like twenty readings before she just gave up.

Those are just ultra-sound machines, I think she was picking something up because there was something there to pick up. Strangely enough, this has dialed down my anxiety level several notches. I am suddenly very calm about everything.

Then I came home and found that Alan Rickman had died. Now *that* broke my heart.

So I guess it's now a wait-and-see kind of thing. I will update again after my scope on the 28th.

Thanks for reading, I wish it were the last installment for this thread.

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2 years 11 months ago #50418 by GKLINE
Hello
I won't tell you not to be nervous because that would be dumb of me, but try and reign it in. You are doing the right thing looking for a specialist in bc. Tell us what they say and what they want to do next. This is a treatable cancer and there are lots of survivors here.
Don't take no for an answer. The Dr need to do a scope of your bladder. They simple insert a brownie sized camera in and take some pictures. It is not usually painful....just annoying. But you can even watch the show "live" on tv.
If there are any tumors present, they will schedule a TURB to remove them. They will do 2 of these just to check for clean margins.
This is the protocol for this disease and all of us have had this done.

And we are still here to give you this sympathetic advice (coupled with some humor to help)

Best of luck
and
Be careful out there


George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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2 years 11 months ago #50393 by Shelbel
Thank you again, Catherine. I'm trying to remain optimistic. And busy. Busy helps. Lol.

Long story (and long visit) short, I ended up in my doctor's office again on Monday with excrutiatiating pain. It was either there are the ER. He did an exam that ruled out anything gynecological, my pain does not seem to be related to IC or a neuropathy--he was pushing hard, nothing is prolapsed. The only thing left in that area where it hurts is the corner of the bladder, the ureter, and the sigmoid colon. Since I have no GI complaints, he's crossing that one off too.

He was very unhappy with the NP's referral to the urogyn, and how long it was taking to get in. He is sending me to someone from OSU instead, and my appointment is now on Thursday 1/14.

I'm grateful they could get me in so soon, but now I'm just nervous.

I'll update after that appointment. Thanks for checking up on me :)

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2 years 11 months ago #50369 by CatherineH
Hi Michelle... I hope you get that call very soon! I will be watching for your followup post to see how things went. I do want you to file this away somewhere in your mind... IF (big IF) it should turn out to be bc, it is very treatable, especially when diagnosed in the earlier stages. There are people here who have been posting for years who can attest to that. My six-year anniversary is coming up next month. Will be thinking of you in the coming week.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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2 years 11 months ago - 2 years 11 months ago #50361 by Shelbel
Thank you for the warm welcome, I do appreciate it.

My real problem is just pain and discomfort at the moment, in between the other UTI symptoms of urgency and dysuria. It doesn't let up. I keep trying to read symptoms from other possible causes, including IBS, prolapse--anything really--and I'll have a few of those symptoms, but not enough to make me feel better that this might be something other than bladder cancer.

Every symptom has so many other potential causes, even my Topomax made me quite tired in the beginning so while most of the side effects of that med have settled down, I still can't say that my sluggishness isn't from that. It's really frustrating, every symptom can land in another disease/disorder column, but I have all of them in this column.

I am on day 5 of the Whole 30 eating plan. I'd been alcohol free (mostly) since July and gluten-free since August because of migraines, and it's my second go at it, so it's not hard at all this time :) . I figured if the pain can be attributed to something like IBS or IC that is irritated by food or drink, I'd like to be as clean as I can be going into that appointment. Although to be honest, my problems started the first week of November, and I didn't start enjoying Christmas cookies and chocolate until the middle of December. But anything is worth a shot, right?

I really hope they call me back soon. I just want to know. I can handle it, I just need to know.

Btw, I love how supportive you all are of each other here. I've gone back years through posts, your empathy and kindness is unwavering. I promise I will update this thread and not just leave people hanging. ;) Reading posts six years after they'd been written and I'm like, "...but, but....what was causing your symptoms????" Lol.

I picked a helluva a year to stop drinking, I'm telling ya.

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2 years 11 months ago - 2 years 11 months ago #50346 by CatherineH
Hello Michelle, and welcome to our forum. You have indeed found a group of people who know way too much about bladder cancer because most of us have been through it. I'm very sorry you are facing this... and as much as you want it to just go away, not knowing is much worse than knowing what is going on. Of course you know that already since you are in the field.

I'm glad you took charge and got things moving to get to the uro and have that cystoscopy. That will answer a lot of questions for you. Please ask any questions you may have... we are way past being embarrassed over our bladder issues.

My hope for you is that it is just another pesky and stubborn UTI. But in case it isn't, we are here to give you that shoulder to lean on. Again... I am glad you found us. Feeling lost on top of everything else is not a good place to be. When you found us... we found you too!

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
The following user(s) said Thank You: Shelbel

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