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Risk and Learning Help Please

1st - All of you are heroes. I have been reading your stories and am inspired. Honestly, incredibly brave stories I am reading.

2nd - Apologies in advance but looking for advice..

Background: Microhematuria since 2015
- 49yr Old Male...
- Kidney stone issues 2016, 2018, 2022 (1 in Jan, 1 in Feb)
- Migraine medication was likely the cause
(changed meds in Mar '22)
- Had several CAT Scans over the years (3-4) due to Kidney Stones
(Most recent was in Feb '22)
- Had a Cystoscopy in 2018 (was negative)
- Recent check up Oct '22 Urinalysis (Dip Stick only) showed 2+ blood in urine (not sure how much that is/what 2+ means)
- My father had a history of Microhematuria (undefined cause - not BC)

I had a good check up conversation with Dr. during the visit and he never mentioned the blood in urine results... When I saw the test results on-line I asked Doc and Nurse about the Blood... and should I be concerned/do something.

After several inconsistent discussions with Nurses and Dr. (one nurse says 2+ is really nothing when it comes to someone with my history, another nurse seemed to have different opinion). Dr. did not say recommend Cystoscopy and die CAT Scan test...but ordered them only AFTER I called to check up on blood in urine test result (which he knew of). Dr. said "you are in 10% I can only give you info and you make the call" UGGGGGGG

Which brings me to my question...
- All of you are experts here....should I have these tests done? I know that more radiation (CAT scan) is not the best for that area...not to mention the unpleasantness of whole scope thing..

Apologies for this seemingly trivial request for advice....All of you are much stronger than I and I feel bad for even asking. My mind is my greatest enemy with this...

Any advice / resource sites would be appreciated.

  1. @ckmerc - I am not a medical professional and cannot provide medical advice. First of all - I am wondering if you should consider a 2nd opinion. As you may know, Bladder cancer can be very aggressive and many times the first sign is blood in the urine. I personally did not have that but was diagnosed with aggressive BC anyway. If you are concerned enough that this may be something more serious that your doctor is telling you, for your own piece of mind you may want to consider the test. I am disappointed that your doctor basically left this entirely up to you though. Possibly another doctor could look at the test results that you have had so far and give an opinion. I wish I could offer more but understand your concern. You need to do what is best for you and what will make you feel more confident in your current medical concern. Keep us posted and good luck with whatever you choose moving forward. Linda Urbanski ( moderator, team member)

    1. great feedback and appreciate it. I guess I was expecting the Dr. to provide the "recommendation"...he kept saying I was in the 10% bracket and low yield risk. Also...just learning (today) that my father had the same thing and it was not BC I found interesting.. not sure if microhematuria is inherited. (non specific cause I mean)

      I will likely get the tests done...I just found it interesting he did not make me aware of the test result in the recent Dr. visit. Just was your BC discovered?

      1. I think for your own peace of mind, having it further investigated us probably the right course of action. Take care. Laura, Moderator,

    2. hi. Like Linda, I am not medically trained. However, I would say since you are getting mixed messages and no clear answer, I would ask to be referred to a urologist to discuss it further. Then you can decide if you feel it’s best to have further investigated. If the doctor you are currently seeing is a urologist, then getting a second opinion may well be the best course of action. Wishing you well. Let us know how you get on. Laura, Moderator,

      1. @ckmerc - I had been having much more frequent needs to urinate for several months prior to my diagnosis. I honestly feel that as I was 63 and always in good health that it thought it must be something simple. I was "diagnosed" without any testing - with having a UTI - This went on for months with it rearing up again. Finally I ended up in the ER with very painful bladder spasms 10 months after being told I had UTI - (first ever) and was finally told I had aggressive stage 1 bladder cancer. I chose to pass on treatments and went right for RC/IC weeks later. 8 years later I am still cancer free, no issues that are not easily manageable and no regrets. I cannot recall if you were considering IC or NEO. Gnick is the NEO person to speak to. As for IC, I have a tip sheet that I would be happy to share regardless of your diversion choice. My best Linda Urbanski ( moderator, " team member)

      2. hey. That’s good to know. I know terminology is different in the US and the UK. I know doctor covers all the specialists too. In the UK, a doctor is a generalist you would see before going to see a consultant/surgeon, for example a urologist. Wishing you well with next steps. Laura, Moderator,

    3. I appreciate the recommendation, Linda - thanks. Linda's tip sheet is a great reference. Contact her directly for a copy.

      I AM the poster child for Neo and recommend it without reservation for those who need a bladder removed. However, let's not get ahead of ourselves. Testing is relatively easy and not that expensive (with insurance), so by all means, see more doctors and get more data. A blue light cystoscopy is an easy out-patient procedure that puts a camera directly into the bladder for a close look. Mine were done by the surgeon at the clinic. Walk in, walk out. Nothing to fear.

      I had zero symptoms. My cancer was discovered by chance a year ago by a radiologist looking at a hip scan. An invasive procedure called TURBT was done shortly thereafter and confirmed the BC, but I waited another six months doing (unsuccessful) treatment before having the bladder removed.

      Creating a neo is not easy, so don't be afraid to ask HOW MANY your surgeon has done. Practice makes perfect...and my Dr said he does 50 per year. No problems in recovery and none since surgery six months ago (except the ongoing unhappiness in my digestive system, which is entirely manageable and relatively free of discomfort).

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