Long Story...Recurrent Hematuria, Investigated, Questions

2 years 2 months ago - 2 years 2 months ago #56321 by carlton
Thank you for your quick reply. That was very nice. I am trying to remain calm, and logical. The recurrence is what really freaked me out I guess. But now, since 11/14, it has been all clear again. The "out of the blue" nature of it is hard on a person like me. I have a hard time now every time I go to the bathroom, wondering if I will see blood again. And I had never seen any before the occurrence on 9/4, though my docs have told me that microscopic has been present in the past, though that was when I also had the UTIs. So I guess I shall just do what I can to try and remain calm. What else can I do? But I very much appreciate you taking the time to reply considering that this board is primarily for those that have already been DX'd.

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2 years 2 months ago #56320 by Finalman2
Hi Carlton!

Just a view from someone currently awaiting a TURBT for a tumour to be removed in the UK. I'm 26, never smoked, never worked with chemicals etc so no risk factors for BC (lucky huh?)

I found blood in my urine ONCE, had a Ultrasound completed thinking it'd be a kidney issue, something was seen in bladder. As soon as they went in they could see what appears to be a papillary tumour roughly 1cm in size and running solo in my bladder. They believe it's non-invasive but we need to wait for the TURBT in 2 weeks time to tell for sure. Luckily I'm in the UK and the NHS have been absolutely brilliant in finding this and tackling it.

I'm with you, I can understand where your worry is with wanting to be around for your kids, you've done everything right in bringing it to their attention ASAP, the fact that nothing was found in the Cysto is amazing news. I'm in the same boat, I am 26 and have been doing everything career wise to prepare for a family, suddenly I've been diagnosed with this at a young age and the future of a family becomes a worry as I don't have any kids yet. I've got no fear of dying, just not being able to live long enough to have a family, see them grow and succeed.

Please never apologies for Health Anxiety, people deal with these things differently and as with yourself, I have been panicked like crazy. You should never need to apologise for that.

I wish I could say something to help you calm down but having a Cysto be clear is, a month and a half isn't a long way (although it definitely feels like it when you're worried). From someone that is genuinely worried about the thought of not getting to see kids grow up, spend your time enjoying your family and you'll find the checkup comes around before you know it!

28/10/18 - Blood???
24/12/18 - Dx TaG2
15/01/19 - Start BCG
06/04/19 - Cysto + Biopsies - CANCER CLEAR
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2 years 2 months ago #56319 by sara.anne
Sorry to hear about your issues and I DO totally understand your anxiety.

Please remember a few things. First, most cases of hematuria are NOT bladder cancer and in many cases a cause is never found.

Second, cytology is not the best diagnostic. Urine cytology tests are notorious for false positives. Most urologists routinely send urine sample for testing, but if the results are "positive" it usually just indicates that they need to look a bit deeper and cystoscopy/CT scans are done. Since you have already had these, urine cytology probably wouldn't add to the information the doctor already has. In addition, he is well aware of your anxieties. And he has scheduled an exam in a few months just in case something does materialize.

A second opinion in your case, to ease your mind, is certainly indicated. It would answer some of your questions. And a month and a half is not too long (except for the nerves!) even if bladder cancer is present. You can call the new urologist and offer to accept a cancellation at the last moment and perhaps get in sooner.

As you know there are lots of reasons for hematuria that are NOT bladder cancer. I could tell you to relax about this, but that is impossible for you, I understand. But you are doing all the right things including scheduling a second opinion.

Wishing you all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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2 years 2 months ago - 2 years 2 months ago #56317 by carlton
Hello...I will try to be succinct and factual, but this is a long story.

47 yr old male, overweight, Diabetic for 20 years, on insulin, but decent A1C (6.4), Exercise 4-5 times per week by walking 5 KM (about an hour per day)

HX of Kidney and Bladder Stones, Born Hypospadias with 3 corrective surgeries as a child, Recurrent UTIs confirmed by culture, from 2012 through 2017, when finally knocked out (Klebsiella Pnuemonia), off and on microscopic hematuria for years

Bad health anxiety history and depression (primarily spurred on by the Sudden Cardiac Arrest death of my best friend in 2013, who I grew up with from the time we were 12). Take Klonopin, and have been on a multitude of other meds....this will be important later.

OK....now the nitty gritty....

9/4/18 - Visible Hematuria on first void of day waking up. Was a bit dehydrated, volume was low, urine was pinkish. Freaked out and went to PCP immediately. Confirmed blood there, as I knew they would. Did a culture, no infection. Referred to Urologist next day. Scheduled for CT w and w/o contrast, with Hematuria protocol, Pelvic and Abdomen, plus Urogram in one week.

9/5 - visited Urologist....suggested Cystoscopy, said nothing about doing a Cytology, though he did take a urine sample at the office. Not sure why he didn't want to do a cytology?? By this time, there was no blood in the sample. Scheduled Cysto for 9/21. Said he would give CT results then.

9/10 - CT scan done....radio tech suggested it looked good, without actually saying so...

9/12 - had a previously scheduled appt. at PCP, so got CT results then. Totally normal. Prostate and Bladder looked normal. Urogram normal. No lymphadenopathy or abnormal growths or Mass seen anywhere in my body. No evidence of neoplasm. Only a diffuse fatty liver, which being fat, I know I've had for a long time, as it was on a scan back in 2013. Also...no stones on the scan, which kind of disappointed me as I was hoping that would be the apparent cause.

9/21 - Cysto day. Very nervous. Given valium, basically no effect. Note: Because of my hypospadias as a child, and all the work done down there, I have a real phobia of urology work, and a very low pain tolerance in my urethra. I have been cathed before, and every time it hurts. No urologist seems to believe me when I tell them this. I wanted this cysto done under light general, as my colonoscopy was back in 2013, but he would not do it. Only used the local gel, plus the valium they gave me that did nothing. Well, I tensed up big time. Great pain going through the prostate, and I mean to tell you I basically screamed.

Results? According to urologist, unremarkable. A slight stricture through prostate area, but not overly enlarged. Notable vascularization of prostate. No growth or abnormality detected in bladder. I specifically asked him after he had pulled the scope out, about any possible CIS areas. He said none. This Uro has over 20 years experience. He was also the head of my state's Urological Association in 2017. I expect he does know what he's doing, but I can't help but wonder if my tenseness and discomfort led him to do a quicker scope than he might have, though it did not feel quick, imo. I'm just hoping he was thorough and didn't miss anything. In fact, at this time, I'm wondering if they actually record the cysto with the technology they have nowadays? So they could refer to it in the future if necessary. Seems they could do so and it wouldn't take much data storage. Just curious.

Also....I asked again about cytology, but he said there is no need to do one. He didn't go into detail. I don't understand that. In the UK, for instance, I know everyone that goes to hematuria clinic get cytology. Why don't they do it here in the US? I know it has some limits, and percentage-wise, might not be super specific, but isn't it better to have more info? Or isn't it? Does that lead to extra anxiety upon false positives, or abnormal results, that aren't necessarily positive?

So I was sent home with an order to follow up in March of 2019 for another Urinalysis, and possibly my first ever PSA. Told not to worry about cancer. Easier said than done, but I tried.

October went by normally, as did early November, and I nearly forgot about the whole thing. In fact, I remember thinking maybe I should just cancel my follow up in march, since I hate Urologists so much.

Note: No blood since that day on 9/4. I also have Urine dipsticks being diabetic, so I have periodically checked my urine for blood with the strips, not finding any. I ran a control test on the strips by poking my finger with a lancet, and putting a drop or two of blood in a glass of water, totally invisible, to see if it could be detected by the strip, and indeed it was, so I know the strips work. In fact, from 9/4 through Cysto day, I was checking almost every time I went at home. I told my Uro this on the day of the Cysto, and afterwards, he said to just stop checking, it's making me more anxious. Was not a good listener about that.

So never any blood since 9/4....until...

11/13 - woke up, 1st void of day, dehydrated, low urine volume, slight pink...did not test this, but in retrospect, it was likely blood. However, urine appeared normal the rest of the day. Tested it before bed, and no blood. OK...not worrying....then....

11/14 - woke up, still dehydrated, been drinking sodapop instead of water. Urine on 1st void wasd exactly like I saw on 9/4. Very pinkish. Kind of a white film on the top of the water. Totally freaked out now.

Called Uro first thing to report it, and ask if I should come in and be seen. They have me talk to a nurse, she looks at my chart, and says NO. Says just monitor it and make note of it and come back on your scheduled follow up in March! What?!?! I CAN'T ACCEPT THAT. I plead with her to please ask the doctor. I ask about the vascularization on my prostate...could that be it? Are they sure the cysto was clear?? She says she will ask the doctor to be sure and call me back. This was morning of 9/14....I get no call back the rest of the day, or 9/15.

Later that day, I noticed a small clump/clot came out in otherwise clear urine. Fished it out. Thought it might be a stone, but it was soft, and I'm guessing it was a small clot. Very small.....maybe a millimeter or two? Maybe a little bit bigger. Hard to estimate.

Meanwhile, I did three things.

1. I had been taking Trintellix, a newer anti-depressant. It has a warning about abnormal bleeding being a side effect. In fact, even the TV commercial mentions this. Over 70% of this medication is excreted in the urine. I started this medication in July 2018. At the time I was also taking a daily Aspirin, and a large dose of Turmeric every day. Both are anti-coagulants. Now, I had stopped the Aspirin after the first episode of visible hematuria, as I had a suspicion or hope that it was the cause, and at the time, I also stopped the Trintellix and Turmeric briefly, but re-started them in late September, if I recall.

Anyway, I stopped the Trintellix on 11/14 for good.

2. I stopped the Turmeric also on 11/14 for good.

3. I stopped my daily walking, hoping that maybe dehydration and/or exercise was playing a role in this. I actually only stopped walking for 2 days, and resumed on 11/16.

I finally called my Uro's office back on 11/16, and was connected back to the nurse I had spoken with before. She apologized for not calling back, but said she had left a note on the doctor's desk. She told me that nothing in my chart indicates an issue, and just to note the recurrence of the visible hematuria, but no need to go back for follow up until March 2019. Ugh.

Well...this hasn't sat well with me. I have been in a tailspin of fear that cancer was missed. I was referred by my therapist to an inpatient/outpatient mental health facility for assessment, as I've been crying, and out of my mind, worried that I have cancer and nobody is doing anything about it, and that it will keep growing inside me and kill me. They wanted me to participate in their outpatient mental health program, but turns out it is cost prohibitive, sadly.

I made a 2nd opinion appointment with a urologist at a local University Hospital, but still cannot be seen until 1/14/2019....so another month and a half. I need to obtain all of my records from my original Uro and bring them to that appointment. Not sure what that will lead to.

I also contacted my Uro using the clinic's online portal, and asked a couple of questions. Why he didn't think it necessary to do a Cytology? Does he record cystoscopies? And also, if he could give me a reason to be confident in his conclusion after the cystoscopy so I could have peace of mind. I think he is a good doctor. I hope these questions do not offend him.

I know health anxiety patients do bother doctors...and I'm sorry for that. But I cannot help it. The blood was there. It is proven. It recurred. I know that upwards of more than 50% of recurrent visible hematuria can show no apparent pathology. That drives me crazy....but I guess I may have to live with it.

I know I have other factors that could be the cause: Prior corrective hypospadias surgery (though my Uro said the scope showed the repair holding up quite well), Stones history (maybe one was passed and I never saw it), Diabetes and the things it can do to your body, Vascularization of the prostate, and finally, medicines with a link to abnormal bleeding.

I just know how important it is for cancer to be detected early, and treated right away, and I have read of cases where a negative cysto on initial investigation does later turn into a found malignancy. I am scared of such a thing. Deathly scared. I have googled myself to death the last few months over this....I need to learn to step away from google. It hasn't been helpful, only frightnening.

I have an 11 year old daughter, and when my best friend died in 2013, his daughter was also 11. I just want to make sure to do everything possible for myself to stay on this planet for a lot longer to be with her. I do not want her losing her daddy....I mean....again, I'm only 47.

So thank you for reading this long story. It's not cancer yet. I just hope I'm never told that it is, and that it is more complicated because of some delay in diagnosis. I pray for all of you that are dealing with this bravely. Please pass on any thoughts if you feel so inclined.

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