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  • Blood in urine, former smoker

    Posted by Donnasue on December 25, 2017 at 4:07 pm

    Tuesday evening I saw blood in my urine. For the evening – like 4 times that night and twice the next morning. I have no symptoms of uti so immediately went to the dr. She wrote me a rx for uti and also gave me a name of a urologist. She sent the culture out and I’ve heard nothing. I think because there is no infection with the holiday upon us I won’t be able to call again until Tuesday. Obviously there are not a lot of reasons behind blood in the urine. Bladder cancer is all over Google… and I used to smoke for like 15-20 years. I’m 46 years old. I’ve had a lot health worries over the years but nothing like this. I’m scared to death. I can’t even function because I’m just so shocked. And I don’t even know what to do next…literally I don’t even know what to do. Do i call the doctor tomorrow and book a follow up or just call a urologist?? And I have my 10 year old daughter with me so i can’t have her seeing my emotion…

    They took a sample and she said there was blood and *some* bacteria in it- when she said some she said it in a way that seemed there was not much bacteria….she said she was going to send it out for culture and see if anything grows. Then said she was also giving me the name of a urologist….so she’s treating for uti because it’s the simplest cause. I do not have a uti though. I am positive because this is not the way they present with me. With me it’s the burning. I have ALWAYS had the burning and I have NEVER had blood.

    If it was only a little bacteria in it that could be from how I collected it maybe i accidentally touched the lid or something. And I have never had a doctor send out a sample for culture because they always could tell for sure in the office.
    I am afraid.

    Donnasue replied 7 years, 1 month ago 4 Members · 20 Replies
  • 20 Replies
  • Donnasue's avatar

    Donnasue

    Member
    January 12, 2018 at 3:48 pm

    Just checking in. I had the ultrasound and Xray today. I feel like she lingered in my right kidney longer than the left. And each time I repeat the blood in urine that brought me to this I feel more and more like it’s serious.
    I suppose I will hear results next week.

    I hope everyone here is well.

  • jack-r's avatar

    jack-r

    Member
    January 9, 2018 at 6:10 am

    DonnaSue,

    Good to hear that you are getting closer to an answer. Sorry to hear that you have had yet_another additional delay. sounds like you have a good doc who wants to assess the overall situation of bloody urine instead of focusing on just the bladder.

    All too often, this ‘battle’ against the cancer seems to be a war in slow motion.We are always waiting for something – the next test, then the results, then an additional test. Even when we receive a good report – No Cancer Found – there is always the next check up or follow up test to concern us.

    Blood in urine is quantified quickly, it is a matter of spinning the urine and using a high power microscope to count cells in a high power field. The purpose of a culture – allowing bacteria etc to grow until they form recognizable colonies requires a couple of days.

    Hang in there. The answers you seek willl be coming your way soon.

    Best
    Jack


    6/2015 HG Papillary & CIS
    3 Years and 30 BCG/BCG+Inf
    Tis CIS comes back.
    BC clear as of 5/17 !
    RCC found in my one & only kidney 10/17
    Begin Chemo; Cisplatin and Gemzar
    8/18 begin Chemo# 3
    Begin year 4 with cis
    2/19 Chemo #4
    9/19 NED again :)
    1/2020 CIS is back
    Tried Keytruda, stopped by side effects
    Workin on a new plan for 2021
  • Donnasue's avatar

    Donnasue

    Member
    January 8, 2018 at 7:41 pm

    So I just got back from my appointment with the urologist. He didn’t do an exam and I have to return to provide a urine sample next week because i got my period today. Of course.
    They scheduled me for a renal ultrasound and abdominal x Ray Friday. After that would come the scope if he needs to. He said my fears are not the first thing he’s concerned about as there are other possibilities to be explored first. My opinion is why don’t they just do the scope and rule that out…. so you’re right again jack I’ll know nothing definitive for a few weeks still. Oh I think he did say it was a good amount of blood in the urine the first time … I guess that’s what the culture showed.
    He did mention inflammation and I don’t even know if that increases the chances of it being cancer or not…I’m still at square one. And afraid.

  • Donnasue's avatar

    Donnasue

    Member
    December 28, 2017 at 1:53 pm

    And you’re right Jack. The dr called to let me know it isn’t a uti, and to call a urologist. So that’s where I head next. In the meantime my lower back is aching a lot and I always attribute that to my previous spinal surgery. Maybe it isn’t.

  • Donnasue's avatar

    Donnasue

    Member
    December 27, 2017 at 9:17 pm

    Thanks guys. Goodness why does everything brake so long? I guess I feel like I’m not doing anything and to be doing something is better than nothing. Ok so I will wait. I’ll let you know what they say.
    Thank you again.

  • jack-r's avatar

    jack-r

    Member
    December 27, 2017 at 8:08 pm

    Donnasue,

    We are sincerely trying to help you. The best advice I can offer you, given everything you have posted, is that you need to accept that you will not have an instant answer.
    If and I mean *IF* you have a serious medical issue causing blood in urine, you are at least a couple of weeks away from a meaningful diagnosis. Maybe longer.
    Please please give the medical system time to act. Worry about the unknown is a terrible enemy to battle.
    Most if no all of have been there.

    Wishing you the only the best,
    Let us know what is found,
    Jack

    Dictated not typed


    6/2015 HG Papillary & CIS
    3 Years and 30 BCG/BCG+Inf
    Tis CIS comes back.
    BC clear as of 5/17 !
    RCC found in my one & only kidney 10/17
    Begin Chemo; Cisplatin and Gemzar
    8/18 begin Chemo# 3
    Begin year 4 with cis
    2/19 Chemo #4
    9/19 NED again :)
    1/2020 CIS is back
    Tried Keytruda, stopped by side effects
    Workin on a new plan for 2021
  • sara.anne's avatar

    sara.anne

    Member
    December 27, 2017 at 7:43 pm

    You could make an appt and cancel if it is a UTI
    or
    one more day would’t hurt to wait


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
  • Donnasue's avatar

    Donnasue

    Member
    December 27, 2017 at 7:35 pm

    I’m back again guys. I still have not heard from the doctor. I called twice yesterday and th y said the results are in however a nurse or the doctor has to read them and they would call. Doctor left at 4:30 and nurses were there til 7:30. I didn’t call yet today because my daughter was with me and I’m at work. My daughter is now with a friend and when I get out I will call again. Should I just make an appointment with a urologist??

  • Donnasue's avatar

    Donnasue

    Member
    December 26, 2017 at 3:21 pm

    Jack, thank you. Yes I am a tough one. After losing my mom to colon cancer when i was 28 I developed an unhealthy anxiety about my health. So I’ve gone down the worry road quite a few times. Nothing like this though. Thanks again. I’ll keep you in my prayers as well as everyone else here.

  • jack-r's avatar

    jack-r

    Member
    December 26, 2017 at 2:34 pm

    DonnaSue,

    You are a tough one. I know from where you come, so…

    From first hand experience, kidney cancer (at least in the early stage) does not have cause pain.
    After months of BCG for bladder cancer (going well, thank you), on a scan they found my kidney cancer – a whole different breed of cancer than the bladder.

    Any things are still looking good. My team and I have a plan, treatment is happening, and a good outcome is expected. A new normal if you will.

    Try to NOT get yourself tied up in negative thoughts and worry. You will deal with whatever life throws at you, once it has a name and you have a care plan.

    Hug your daughter, get out and have a special day, play Chutes and Ladders..anything to remind yourself that life is good. Yes, we all know how hard it is to stop worrying about the “worst”. But do try to stop.

    Best,
    Jack


    6/2015 HG Papillary & CIS
    3 Years and 30 BCG/BCG+Inf
    Tis CIS comes back.
    BC clear as of 5/17 !
    RCC found in my one & only kidney 10/17
    Begin Chemo; Cisplatin and Gemzar
    8/18 begin Chemo# 3
    Begin year 4 with cis
    2/19 Chemo #4
    9/19 NED again :)
    1/2020 CIS is back
    Tried Keytruda, stopped by side effects
    Workin on a new plan for 2021
  • Donnasue's avatar

    Donnasue

    Member
    December 26, 2017 at 2:08 pm

    I suppose that is one of the things scaring me is that everything I read points straight to bladder cancer because I have zero pain in the kidney area… Thank you for your post it helps to not feel so alone.
    I called the doctor’s office and said the culture results weren’t back yet possibly due to the holiday. She said the dr. would call when they are back. So I’m waiting for the phone to ring and hoping my daughter will be involved with something else when that happens so that she’s not hearing the call.

  • Alan's avatar

    Alan

    Member
    December 26, 2017 at 1:43 pm

    As Jack and Sara Anne have posted, you won’t know anything until you get the culture back. IF it is not a UTI it still can be MANY other things. Kidney stones can cause bleeding. I even know 3 people that have passed blood with no known reason ever discovered, my wife is one of those. They did a retro-pylogram into the kidneys and NEVER found a cause. The best advice I ever got….. one day at a time.


    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.
  • Donnasue's avatar

    Donnasue

    Member
    December 26, 2017 at 12:33 pm

    Thank you Sara Anne. Thank you for taking the time out of your day to answer my questions and offer comfort. It means a lot to me especially right now.
    So over the last few nights I have been paying closer attention to how my body feels and I’m noticing little things like maybe I do use the bathroom more often than most people. I thought that was just because I drink ( too much) coffee. I go a few times at night too.
    Today the doctor’s office will reopen and I will call to see what they say. I suppose I will research good urologists as well and make that appointment.

  • sara.anne's avatar

    sara.anne

    Member
    December 26, 2017 at 1:03 am

    I do understand your concerns Donna Sue. When I was diagnosed I was sure that I was going to die. Then I really researched bladder cancer, had long talks with my doctors and realized that there was a lot of hope for the future Right now all you can do is wait for the pathology report. After your first urological exam the urologist may be able to give you an idea of what you might be facing but it won’t be sure until that path report is back .

    If your diagnosis is bladder cancer and if you are like most of us you will lose a day or so of work when you have the TURB and a day or so here and there maybe even once a week occasionally depending on your treatment options.

    You need to remember when reading about people whose bladder cancer was discovered because of blood in the urine is that these are people who ended up with bladder cancer I don’t know of any websites for people who just had urinary blood and then were diagnosed with a UTI or something else that was not cancer You are reading about a self selected group of people

    I realize that nothing I say can completely alleviate your worries but in reality you don’t have any idea what the diagnosis may be We will keep our fingers crossed for you

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
  • sara.anne's avatar

    sara.anne

    Member
    December 26, 2017 at 1:03 am

    I do understand your concerns Donna Sue. When I was diagnosed I was sure that I was going to die. Then I really researched bladder cancer, had long talks with my doctors and realized that there was a lot of hope for the future Right now all you can do is wait for the pathology report. After your first urological exam the urologist may be able to give you an idea of what you might be facing but it won’t be sure until that path report is back .

    If your diagnosis is bladder cancer and if you are like most of us you will lose a day or so of work when you have the TURB and a day or so here and there maybe even once a week occasionally depending on your treatment options.

    You need to remember when reading about people whose bladder cancer was discovered because of blood in the urine is that these are people who ended up with bladder cancer I don’t know of any websites for people who just had urinary blood and then were diagnosed with a UTI or something else that was not cancer You are reading about a self selected group of people

    I realize that nothing I say can completely alleviate your worries but in reality you don’t have any idea what the diagnosis may be We will keep our fingers crossed for you

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
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