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Concerned - husband w/blood in urine

3 years 7 months ago #48687 by MadLove
Go with your gut about sitting in on the doctor's appointment. When my husband mentioned visible blood, my thought was an enlarged prostate and I discussed with my husband he should have that evaluated on the initial problem visit with the PCP. I didn't go that appointment and there was no exam of the prostate. An enlarged prostate has since been mentioned, but the focus now is on the BC. I think if the prostate exam was done 12/2015, we may have gotten the referral to the urologist sooner. The extra time in the long run probably won't change the outcome. But it is something I regret.

My husband is also a go with the flow type person and not so concerned about the details. He needs to have a second set of ears in the doctor's office. Plus, the upside for him is if I am in the doctor's room, he gets out of having to do the play by play recall of the visit.

It's been useful to take a notebook to the appointments to keep personal notes and jot down questions in advance to ask the doctor.

Wishing you well.

Husband's journey:
01/2015 1st cystoscopy
03&04/2015 TURBTs-CIS
07/2015 Finished BCGx6
08/2015 biopsy-BENIGN!
10/2015 Finished BCGx3
12/2015 Cysto, redness
01/2016 TURBT, Benign
04/2016 Cysto
05/2016 Finished BCGx3
07&11/2016 Cysto's
1/2017 Finished BCGx3
2/2017 Cysto, redness
3/2017 TURBT, Cysto...
The following user(s) said Thank You: CRDot

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3 years 8 months ago #48686 by CRDot
Thank you both for taking time to respond to me. I am trying not to worry, and he is the "what I don't know won't hurt me" kind of guy, so he isn't talking about it much. We have discussed that we will want a 2nd opinion if there is a C diagnosis. We live in Tallahassee, FL so we are within a few hours drive of Mayo, Shands and Moffitt, but deciding where to go will be the challenge.

Hubby is a smoker, so he is at a higher risk. I have read that the blood in the urine is sometimes there one time, but not the next, so if it doesn't show up in his urine on Wednesday, I'm afraid his PC won't give him the referral. I've told him to insist that he gets the referral no matter what, but he isn't always comfortable being direct. I know he is a grown man, but I wan to go to this appointment with him, but don't want to seem over bearing.

I'll keep researching for 2nd opinion dr's and be prepared in case it is needed. It is great to know you are all here if needed, but I too pray we don't have to become regular members. Thanks again! C

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3 years 8 months ago #48684 by MadLove
Dear CRDot,

My 51 year old husband's symptoms presented 12/2014 and included visible blood in the urine. The PCP treated initially for suspect UTI, followed up with CT scans with and without contrast before making a referral to a local urologist. A cystoscopy in 01/2015 confirmed a mass in the bladder and a TURBT was scheduled with our local urologist.

Due to a planned absence by the local urologist, the TURBT was planned for 3/2015. That wait was a blessing. In that time, we discovered this forum and subsequently sought a second opinion with a bladder cancer specialist at a Center for Excellence a quick two hour drive from home.

We met with the BC specialist in 2/2015 and immediately knew we were had made the best decision possible. A first TURBT was done 03/2015 and non-invasive CIS was diagnosed. The repeat TURBT is schedule for 04/22/15.

Switching to a BC expert has provided tremendous relief. While I continue to read and research, it's more for the purpose of being able to better understand our treatment plan. If we had remained with our local, rural area urologist, I would have some doubt if everything possible was being done. Based on initial feedback from the local urologist, my husband would likely have been scheduled for an RC rather than a repeat TURBT.

The forum has been a wonderful resource and I am grateful for the experiences shared by contributors and their feedback.

I am sorry you and your husband are facing a potential BC scenario. If that is the diagnosis, as most on this forum would say, plan for a second opinion with a BC specialist.

Wishing you well.

Husband's journey:
01/2015 1st cystoscopy
03&04/2015 TURBTs-CIS
07/2015 Finished BCGx6
08/2015 biopsy-BENIGN!
10/2015 Finished BCGx3
12/2015 Cysto, redness
01/2016 TURBT, Benign
04/2016 Cysto
05/2016 Finished BCGx3
07&11/2016 Cysto's
1/2017 Finished BCGx3
2/2017 Cysto, redness
3/2017 TURBT, Cysto...

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3 years 8 months ago - 3 years 8 months ago #48683 by Cynthia
First off Dot my dear. Breath. Ok? All of us here have been there and have the tee shirt, the c word panics anyone. There are about a thousand things that can cause blood in the urine some benign some not so much the vast majority manageable. Until you have a firm DX you will not know what you are dealing with. Even if it is bladder cancer that can mean many things again the majority manageable. As far as pre planning goes know where you want to go for a second opinion if need be, hint some where that does a lot of bladder cancer. Try looking under Hope in the main menu for the center finder it has some places all over the US with bladder cancer programs. Until you know what is really going on be kind to yourself and each other. And know that we are here but we hope you don't need us.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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3 years 8 months ago #48682 by CRDot
Hello all. I found this forum through days and days of research on bladder cancer, symptoms, lab results, etc. My husband (41)became very ill at work on Thursday of this week (became very jittery, weak, heart racing, etc.) at work so he went to urgent care to get checked out. They ran several tests including EKG, etc. because he has HBP, routine labs, and a UA. Almost immediately after getting his urine sample, they stepped back in and asked him if he had been having in back pain, or pain urinating. He has had some back pain, but when he explained it to the dr, they said it sounded muscular. They sent him over and did xray of the kidneys to rule-out kidney stones, it was clear. Fast forward to the end of the appointment, diagnosed him with a respiratory infection, and said that was probably causing him to feel the way he was. Then the bomb got dropped, we were told he needs to follow-up with his primary care doctor ASAP next week to be evaluated because of the "large amounts of blood" in his urine and he is very anemic. His labs and UA were clear for infection. He is apparently losing blood from somewhere. Doctor suspects it could be bladder cancer, and he should see a urologist and will likely need a CT and/or Cystoscopy to evaluate.

So, obviously we are in a bit of panic. He has had no symptoms. The "large amounts of blood" were a shock. He says he hasn't noticed any blood in his urine. So, while if it is BC, I am extremely greatfull that we have found it, I am so shocked that I just don't know what to think. He has an appointment with his PC dr on Wednesday. Hopefully they will give him the referral to urologist ASAP.

Does anyone else have experience with the blood in the urine that wasn't obvious? I want to believe it is nothing, but I keep coming back to the anemia - something has to be causing the anemia in an otherwise healthy man.

Any guidance, or similar experiences you can share would be greatly appreciated. I'm a hope and pray for the best, but prepare for the worst kind of person - so I'm probably researching myself into a full blown meltdown!

Thanks in advance!

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