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Anyone Experience This??

1 week 1 day ago #53726 by Nancycccslp
You know the answer before I say it. You need to see a urologist for a cystoscopy. If that simply cannot happen, you at least need a CAT scan.
You do not sound crazy. Just because your insurance is limiting, is no reflection on you. Talk to your primary doc and beg for a CAT. Talk to the nurses at the insurance company and stress that you have a history of bladder cancer. I'm sorry that due to your coverage, you have incredible hurdles that have nothing to do with maintaining your health!!

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1 month 1 week ago #53592 by Hannah01
Hi Josephine, your plans seems to be the issue, you either call them or discuss it with your doc. Wish things will be much better initially...

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1 month 2 weeks ago #53553 by Alan
Welcome, we are still sorry for the reason to be here. Your HMO does sound like you are hampered somewhat. One question on that. Does it still pay for out of network just a slower rate that might be capped at a maximum loss?

On to your situation. Sounds like you are still doing at least your yearly cystoscopes which are simply necessary if for nothing else peace of mind. You still need to find the reason for passing blood. Sometimes the cause is never found but, you need to try. A CT scan of the torso is often done to see if the kidneys to rule out something else going on. Especially since you did have bladder cancer 6 years ago

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 2 weeks ago #53550 by Jack R
Josephine,

I think you are concerned and trying to get proper care from an HMO plan.

Perhaps your doctor can describe what you should expect in the way of post cancer services. If the level of care seems too low, call the insurance carrier and ask for their standard of care.

I hope you can get an answer to the cause of the bleeding. Guessing and prescribing is not the same as diagnosing and treating.

Best,
Jack

6/2015 Bleeding, hurting, scared
DX: HG Papillary & CIS
2 Years and 24 BCG/BCG+Inf
The CIS remains superficial.
It goes away then returns again.
Clean as of 5/17; Adding additional
drugs to BCG maintenance schedule.
Remaining Hopeful.

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1 month 2 weeks ago #53538 by Josephine
Hi everyone! This is my first time posting on this site. Can anyone tell me if this situation has happened to you or someone else? For almost a year I have seen some blood on toilet tissue sporadically. A month or two could go by until I see it again. I have absolutely no symptoms of a UTI at all. Each time I see it, I go to Urgent care and my urine analysis, cytology shows negative result. There were times when I used UTI test strips (as I didn't want to waste time or money at the Dr if the result was negative) and again negative results at the drs office. So last Friday and Saturday I tested my urine again ( urine had a terrible odor) and both times the test was positive for nitrates. Went to the Dr. Monday morning at urgent care and urine test at the drs office was negative but she sent it out for cytology and I'm awaiting results. When I went to Uro back in March 2017 (for these symptoms) after waiting two months for appt and again urine showed no infection. ( dr was booked so I had to see his Nurse Practitioner) Since I had a cysto in September 2016, she felt it wasn't necessary to do another one since it was all clear. She said it was probably cystitis and gave me a prescription for Cipro, which I never filled. I'm not taking meds for a maybe diagnosis. Has anyone experienced anything like this? The next appt I have is on July 27th with my doctor.

I was diagnosed with Ta non invasive in July 2011. Had a Turbt and mitomycin instillation. In 2015 during my cysto the Dr saw some flat red lesions and I had a biopsy done and he said I was still in remission.

I know this is a crazy story and I sound nuts!! But it's all true and making me crazy. I don't get the best treatment (I'm well aware) but I have an HMO from work and have to use the drs that are available to me. If you are reading this post, I'm sure you are saying or thinking,"What's wrong with this person, Go to a different doctor that knows what their doing!!" I wish I could but that's not possible for me.

So anyway, that's my story. I can't help but think and worry that my cancer is back or coming back or whatever!! Something is going on for sure. I wish you love and light.

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