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Not sure if I have it

11 years 1 month ago #17498 by Jill
We have been working to get appointments with our local urologist and the expert Patricia referred me to at OHSU. My first appointment is tomorrow with the local urologist. My records were faxed to OHSU yesterday and I think their review board will look them over today.

I'm not sure what to expect tomorrow--probably the cystoscopy?

What if OHSU gives me an appointment as early as Friday or Monday--will they do the cystoscopy again? Or can they use the results of the local one?

Thanks in advance. I'm getting really nervous now, but glad I'm getting in to find out.

Jill

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11 years 1 month ago #17332 by Jill
Tate, Maria, Patricia-thanks so much.

I showed my husband all the responses on the forum and he was thrilled just as I was. You guys are great.

Patricia, you're right. We will call Dr. Daneshmand regardless of what my insurance says. I loved what his bio said--sounds like he's not only competent, but very concerned about full knowledge of the patient and family support.

I don't have clots yet, so I guess I'll just wait for now. We'll be on the phone Monday morning and see what we can work out and I will be sure to keep you guys informed along the way.


Jill

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11 years 1 month ago #17327 by Patricia
Jill...look at this page.....http://www.emedicinehealth.com/blood_in_the_urine/page2_em.htm
It will tell you that microscopic blood is usually from the upper tract and pink, red or tea colored is almost always lower tract.
There are also foods and medications that can cause a pink cast
If you start passing clots then its time to go to the ER.
You're only about what 45 minutes from Portland....i'd go there in a heartbeat..insurance or not. This is just to important. And at these major centers they are usually very quick to get you in. I personally consulted with no less than 6 top specialists all over the country and they didn't charge anymore than my local uros do which kind of surprised me.
Pat

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11 years 1 month ago #17326 by Jill
Wow--thanks so much for all the info.

I'm very familiar with OHSU--my father actually passed away there :(

They have a great reputation in Oregon--I will check with my insurance company to see if I can get up there.

Okay, here's another dumb question--how do I know if I'm having "heavy hematura"?
I can tell you that for three weeks, there is visible red/pink in my urine 95% of the time. Interestingly enough, the first time I go in the morning, it's clearer than it is for the rest of the day. The rest of the day, I almost always have pink urine (sorry to be so graphic!) I don't know if that is considered heavy or not, but my doctor did look at the workup yesterday, for what that's worth, and she didn't tell me to go to the ER.

I think we'll probably call Dr. Daneshmand next week. We weren't happy with the non-response we got from the urologist down here.

Thank you, thank you, thank you all of you for your help so far. I do appreciate it so much.

Jill

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11 years 1 month ago #17321 by Patricia
Jill...the best place in Oregon is in Portland and part of the NCI. The OHSU Cancer Institute.
http://www.ohsu.edu/health/meet-our-staff/doctors/doctor.cfm?id=11019
This doctor trained with one of the absolute best in bladder cancer at USC/Norris with Dr. John Stein.
You will see a phone number to call on his bio...when you call make sure they know it is an emergency..that you are having hematura.
Personally i had no pain whatsoever with my bladder cancer..the hematura came out of the blue. I was advised to go to the Emergency Room where they did a urinalysis and a CT scan. The CT scan showed the tumor in the bladder and they always assume bladder cancer until proven otherwise.
As for how fast it grows...its anybodys guess but when it becomes symptomatic you really don't want to waste any time getting a correct diagnosis and i can't relate how crucial it is that you are seen by someone who sees lots of this and your best bet is at a large cancer center or university setting. The local urologists generally do not deal with a lot of this....their expertise is generally in prostate problems and cancers.
I hope that your insurance will allow you this option.
If you should experience heavy hematura...go to the ER...at least they will do a CT scan.
I wish you the best........Pat

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11 years 1 month ago #17320 by marie
Hi Jill,
You are in the right place for support and information. I'm not an expert, and I suppose there could be something else going on, but I feel that you should do all you can to get to see a urologist as soon as possible. They will likely do an ultrasound or a cyctoscopy (they go into the bladder with a scope), and then you will know more. It's not the most pleasant, but I had a topical which made it bearable.

In my case, I did not have any blood in my urine, only a pressure feeling for a few months. My doctor gave me antibiotics, and it did alleviate it for awhile but then it came back. From there I had an ultrasound, then a cystoscopy. The urologist was able to tell me it was cancer from the cystoscopy, and then I had a trans-urethral resection of the bladder (TURBT) where they removed the tumor and told me the stage and grade of the cancer. (It took a few weeks to get the pathology after the TURBT).

Don't get ahead of yourself and try to stay calm. Many bladder cancers are low grade and can be managed by removing them. You'll get lots of answers to your questions as you need them from the many helpful people on this forum. Just try to get into see someone as soon as you can.

Keep us posted...
Marie

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