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Blood in urine

MandiePandie's picture
MandiePandie
Posts: 84
Joined: Dec 2020

We couldnt even get just a days break from the b.s. Dad did his last round of FOLFOX, was struggling through the subsequent fatigue, cold sensitivity, and nausea. Just as he felt like he was turning the corner, just as he planned to dip his feet in the pool the next day and try a beyond burger and maybe even a bit of his favorite ice cream; he woke up and noticed blood in his urine. 

I am so angry. Maybe its the pregnancy hormones. My family wont talk about anything so I dont know if what I am feeling is normal. I just know I feel so damn angry. Gross hematuria (not the microscopic blood) is usually a bad sign. He has no pain, nothing that would indicate this is simply his prostate, the urinalysis showed no signs of infection. His blood work was normal except for his platelets at 114 (should be above 150) and his iron and iron saturation low. No one from the oncology doctors office will speak to him, they just ordered the lab work and refered him to urology. The appointment is in a little over a month. Maybe thats why I am so angry, how can they make him wait so long? 

I just wanted him to have a little bit of a break, a little bit of time to find his new normal, to enjoy things again. Instead, he is utterly crushed and reminded that something is wrong everytime he pees (yes it happens everytime), and told "we will see in in 5 weeks". 

 

Real Tar Heel
Posts: 255
Joined: Nov 2019

The time distance for the appointment may be because of his insurance having to approve the tests. However, this sounds very serious. Have you considered taking him to the emergency room, a walk-in clinic? What about his PCP? Chemo drugs kill so many parts of us I think the medical pros who have been at it a long time just shrug things off as being par for the course and not dangerous.

Sorry he's dealing with this. It's a good sign that he is not experiencing pain. Might try pressing against his lower back to see if he feels anything.

MandiePandie's picture
MandiePandie
Posts: 84
Joined: Dec 2020

He has an HMO and its in the same hospital system, surely they will do the cystoscopy but its just literally the first availability. I wanted him to just go to the ER but frankly he is so afraid of them now after his experience with an abscess following his resection surgery that led to his ileostomy. He really starts to tremble with fear at the thought of going back to the ER, plus now this his oncologist knows about it and is apparently fine with just letting him wait, he doesnt want to push the issue and is just hoping it goes away. Like you said though, it sounds serious and honestly thats because usually it is. The absence of pain is what probably points to this being something more nefarious which is just another reason I am angry about the wait time. UGH. 

 

Thanks for taking the time to reply by the way. It means so much more than you could ever know. I feel like an island of one, trying to encourage my dad not to let it bother him and lying that I am sure since the oncologist isnt freaking out that it could be nothing. Then of course the moment I am not with him I break down. Anyway, thanks again for replying :) 

Tueffel's picture
Tueffel
Posts: 310
Joined: Feb 2020

Go directly to the emergency department and telling them about the symptoms. Many things can cause hematuria but if it is visible with the eye it should be checked out. I dont know which chemos cause it but eg hemorrhagic cystitis is a side effect but it can be treated really easy. 

But I know how you feel, one good week and then several bad weeks. You get some good news and the next day the bad ones.

There is on sign you can do for kidney stones. You put your hand flat above the kidney on the backside and bump it with the fist. Do it on both sites and see if he experiences pain. 

MandiePandie's picture
MandiePandie
Posts: 84
Joined: Dec 2020

He certainly wont go now as his oncologists office did not direct him to do so. Obviously if he develops any other symptoms I'll just tell him to go instead of calling, but frankly he is just really so afraid of the emergency department. I dont blame him of course, it was so horrible that he was there all alone before and he developed some real PTSD from it all. Its almost child like, how children become afraid of going to the doctors because they got a injection at the last visit; but I dont mean that in a negative way towards him, its just so sad is all.  Its so horrible to have to see your dad have to suffer. I know you know that. What a horrible club to be in.

I was hoping it could be hemorrhagic cystitis... but usually that causes pain or other urinary symptoms. Of which he has none. No burning. No hesitancy. No frequency. No fever. No flank pain. Nothing. Nada. Nichts. Just pee the color of tea.   

I am trying to be hopeful that because he had CTs and the PET scan 4 months ago before he started treatment, that nothing too serious could be happening. But I know those scans can miss mets often, and as rare as a kidney or bladder met is, they still happen to someone. Im just sort of wallowing in the "why him?!" of it all. We just wanted a darn break. UGH! 

grammadebbie's picture
grammadebbie
Posts: 471
Joined: Jun 2009

I totally understand his fear of the ER. I've experienced  some great fear of them in the past also.   I have a HMO also.  Maybe  you could take him to Urgent Care instead of ER.  They have been very helpful to me in the past.  Also, it's ok to be a advocate for your Dad!  Cancer patients don't always make the best decisions because they are overwhelmed and just want some "normal" time.  I have had doctors in the past apologize to me after a trip to the ER.  Saying they didn't realize the urgency of the situation.  (even though they were told of the urgency). At least at Urgent Care you will get  some testing and maybe even a prognosis. Praying for you all.

 

 

worriedson714's picture
worriedson714
Posts: 327
Joined: Dec 2019

My dad has been dealing with the same thing on and off for a while as well as UTI's that seem to happen everytime he doesn't drink water for a little bit . My dad also has kidney stones one which is very big as well as swelling and inflamation in one kidney and his kidney doctor wanted him to do nothing . Since my dad just had a recurrence of his cancer the kidney doctor wanted him to go threw chemo and radiation then deal with the kidneys . It took me days of arguing with the kidney doctor to get a ultrasound scheduled to get his kidney checked out . Now my dad isn't on chemo as of yet but the urologist and kidney doctor both told me flat out blood in urine isn't a emergency . They simply look at is cause of my dad's kidney stones and urostomy he is high risk for UTI's . However it should make a huge difference that your dad is on active chemo I would for sure go to the emergency .

         My dad is just like yours he is afriad of going to the emergency room now and he tends to ignore problems out of fear it seems like . Like right now my dad's liver numbers are up also he doesn't even want to have them rechecked or a scan . All you can do is explain to your dad how worried you are and be supportive and hope that gets threw to him and he agrees to go to emergency room . 

        Far as anger goes I believe it's normal cause I am so angry I want to punch a wall all the time cause just like your dad my dad always seems to have another problem waiting in the wings . I pray for him to get a break even for a day and my heart breaks cause he never seems to get one . All we can do is be strong for our dad's now they need us more then ever we have to be the ray of hope they need to give them what they need to get threw this . 

              The waiting omg gets me so angry right now my dad's cancer just got confirmed as back and we have to wait 3 weeks for more appointments just to get ready for treatment . It literally has me seeing red honestly some doctors just don't seem to care all you can do is what I been trying to get my dad to do look for new better doctors there are some that care . 

MandiePandie's picture
MandiePandie
Posts: 84
Joined: Dec 2020

The thing with the wait is, its just long enough to not let us have normalcy and for the anxiety to just build and build. This sucks. 

worriedson714's picture
worriedson714
Posts: 327
Joined: Dec 2019

              I know what you mean my dad just had a recurrence we have to wait 2 weeks for appointments to set up treatment meantime he has blood in his urine and maybe even what looks like blood clots from his kidney stones . It took me two days to force the doctor to do a ultrasound and now they don't want to do nothing until after the cancer is handled . It honestly just seems like some doctors don't care which is why we are getting a second opinion trying to find better doctors . Has your dad thought about a second opinion or looking for new doctors ? There are those that care just got to find them .

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

Maybe you could say something like "The scan readings done by the hospital rad department ensures they are being the hospital guards/lawyers if you will to make sure everything was looked at closely?"  That raises an eyebrow and gets more indepth info than just say a half pg, 1 page report about what is going on.

MandiePandie's picture
MandiePandie
Posts: 84
Joined: Dec 2020

Not sure what you mean. 

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

All I am saying is standard dictation/reading scans is not sufficient.  If I get a scan reading that just says min this or that I ask for another reading.  Some benign things are dismissed but could be important down the road or now.

EX: after a SOC reading on a scan I requested they go back and look again to report everything, not just saying things like this organ is normal, that is not abnormal, ect.  2nd read noted a mucus plug in my lung.  HELLO people that is important information I need to know!!! SMH...apparently been there for 6 mths or so, no mention of it.  Mucus plugs decrease O2 levels, duh...but not so much as increase inflammation so I am told but haven't researched the imflammation part yet.  So now, working on getting the mucus plug to discharge...Be pro-active, very pro-active or you could miss something important.

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