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Homepage – Forum Forums Newly Diagnosed With Bladder Cancer Brand new here, wondering a few things.

  • This topic has 9 replies, 6 voices, and was last updated 3 years ago by Joe.
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  • #41555
    canuckfanforever
    Participant

    Hi everyone, thank you for accepting me into this group.  I am a 64 year old woman, who has had chronic UTI’s for years (non-symptamatic only shows up on physical urine test).  A few months ago, I had pain in my lower right abdomen, so my gp sent me for urinalysis.  Yes, another UTI.  Went through 3 rounds of different anti-biotics, finally the infection is gone.  But my latest urine test showed blood in the urine.  Nothing in the toilet bowl.  She was already sending me for ultrasound because the pain in abdomen was still there.  The ultrasound showed mass in the bladder, not a huge one but not a small one either.  Solid, somewhat polypoid, vascular mass upper anterior , right side.  Some calcification, thickening of the bladder mucosa posteriorly near the mass.  Suspected bladder carcinoma.  I have a cystoscopy scheduled for Wednesday.  In other forums it sounds like some have the tumor removed during this procedure then sent to pathology.  Some need chemo, some don’t.  Apparently the urologist I have been referred to is just taking a look, no procedure will be done at this time.  Is this normal?  I was hoping to come home tumorless.  Is it quite possible that it could be benign?  I am beyond freaking out as my 65 year old husband is terminal with pancreatic cancer, is near the end.  I am his caregiver as he wants to be at home.  I need this dealt with as quickly as possible, and I need to be well.

    Sorry to carry on, but I am not sure if this is proper protocol or not?  Why are some dealt with at the cystoscopy and others have to wait again for another few weeks?

    Any info or insight is very grately appreciated.

     

    • This topic was modified 2 years, 10 months ago by Jack Moon.
    #41556
    Jack Moon
    Keymaster

    Hi Canuckfanfoever

     

    The normal procedure for 1st visits is the Urologolist will be to perform a cystoscopy. Once he/she has seen the inside of your bladder and if a tumor is present he/she will schedule a Turbt to remove the tumor and have it sent to pathology. It is always possible that a tumor could be benign.

    So your Urologist is following the normal protocol at this point.

    So sorry regarding your husband.

    I wish you all the best, and keep us posted on how all goes.

    All the best,

    Jack

    #41558
    marysue
    Participant

    Hi Canuckfanforever:

    Jack is right.  This is the usual protocol.  When I first had blood in my urine back in June 2008, I went straight off to my GP.  After a solid poke and prod exam, asking questions and checking my urine, he determined that I most likely had something going on in my bladder so he ordered an xray and ultrasound.  These tests showed not one but potentially half a dozen tumours in my bladder.  I was shipped off to see a urologist the same day and after reviewing my test results that was when he told me that he wanted to do a cystoscopy exam to view the inside of my bladder to confirm what the ultrasound and xrays were potentially showing.

    Unfortunately for me, the cystoscopy exam confirmed the xrays and ultrasound.  I definitely had tumours in my bladder.  I had surgery a few weeks later to have them removed and they were sent to pathology to be staged and graded.  The majority of urologists want to do a proper surgery at a separate appointment than the cysto check usually because of the length of time it would take to remove the tumours and the extent of what they may have to do may require a general anesthetic.  Usually the days docs are doing cystos they have a lot of patients lined up and it is a quick in and out for the majority.

    Occasionally some docs will remove the tumours during a cysto exam but from what I’ve heard it is not always a pleasant procedure.  With my case I would not have wanted to be awake when he removed all those tumours.  So being your first rodeo, I’m thinking that your uro wants to take a good look with the cystoscope to determine the size and scope of the potential issue and plan it from there.  Hopefully whatever is there is benign and a simple removal will do the trick.

    Like Jack, I’m sorry to learn about your husband.  This is not an easy road for you.  Take care of yourself and get all the help that you can from others to get whatever you need done.  Please keep us in the loop and best of luck going forward.  You’re in my thoughts and prayers.  ((((HUGS))))

    #41578
    Nightingale
    Keymaster

    Hi Canuckfanforever!

    My heart goes out to you!  Being a caregiver while having to deal with possible bladder cancer is tough.  You seem to me to be tough and positive minded.  I hope everything works out for you!

    Please keep us in the loop and lean on us as much as needed.  If you wish to talk live, I host a monthly support group and my next one is on Tues May 25 at 6:30 PM.  We use ZOOM to hold this virtual session.

    Let me know if you’re interested.  Btw, we’re in South Western Ontario.

    My best,

    #41580
    Sandy
    Participant

    Hi Everyone,

    I am a 56 yr old female who was recently diagnosed with bladder cancer and I have just had my first TURBT with a stent left in. I’m home and doing well. I just got a call from my UROLOGIST and I am now getting a second TURBT done within the next 6 weeks and being set up to receive BCGtreatments over the next 6 weeks. I have a high grade tumours. I forgot to ask what stage or type?  He may have told me but I can’t remember. There was a lot of info to digest.
    My question to you all is, how did you manage while working during your treatments?  What were your experiences navigating work, appointments etc.
    Cheers!

    #41582
    Nightingale
    Keymaster

    Hi Sandy,

    I am an 11 yr BC survivor and remember distinctly after my first turbt with a stent left in; going into work.  I remember doing a one hour presentation, and running to the washroom after to pee and ensure everything was ok.  I did pee some blood, which was to be expected.  Thankfully, my job allowed me to work from home most of the time, and shortly after (10 days) I was able to remove the stent myself and experience some normality to my life.  My cancer was low grade non invasive, and I never received the BCG treatment.

    My cancer returned 3 times and after each procedure I was able to do some work almost immediately.  Thankfully, my job did not require physical exertion.

    I hope this is somewhat helpful

    My best,

    #41585
    marysue
    Participant

    Hi Sandy:

    I am a 10.5 year survivor.  I have had bladder cancer twice.  Both times were urothelial carcinoma, Stage 0 but high grade.  I suggest next time you speak with your uro ask to double check the type of bladder cancer, stage and grade.  It sounds like your uro is doing his due diligence in having you do a second TURBT close after the first one.  Many of them do this to try to ensure greater success of “getting it all” and in some cases it seems to reduce the likelihood of recurrence. Sometimes it is to confirm the pathology results of the first surgery.

    I did 21 BCG treatments over a 3.5 year period between 2008-2012.  I did the first 6 after my first TURBT.  When the cancer recurred in the summer of 2010, ( a single urothelial tumour also stage 0, high grade) I had another TURBT followed by 15 more BCGs ( a second set of 6, followed by 3 sets of 3 ending in January 2012).  I have been clear ever since.

    To answer your question about work – after my first TURBT I was not working at the time, nor during the first 6 BCG treatments but based on the extensiveness of my first surgery (6-8 tumours were removed) and the side effects from the BCG I definitely would have needed time off.

    When I had the recurrence in 2010, I was working part time retail work.  I knew from the past experience that I would need time off because of how I felt and  my job involved lifting.  I took three weeks of medical leave for the surgery.  When I came back my supervisor put me on reduced hours for the first week back. We had allowed for me to have a full month off if needed. For the BCG treatments I booked the day of treatment off and the following 2 days because of the side effects making me feel like I had a hefty dose of the flu.  After a couple of days of rest I was able to manage my job.

    So, I think to answer your question my suggestions would be – take it slow and one step at a time to see how it goes.  I’m glad to know that the first TURBT went well and hope that the second does too.  However with having 2 surgeries almost back to back, I would say be prepared to take some time off if needed and a lot of that will depend on the type of job that you do.  As mentioned Nightingale was able to work from home for much of the time and that can make a difference especially if you need to take bathroom or rest breaks.

    Same for the BCG treatments.  I strongly recommend at least taking the day of treatment off – firstly because you have to cut fluids a few hours prior to treatment and then while doing treatment you may be asked to lie down during that time.  There is now some debate about whether it is necessary to lie down for the 2 hours.  Some doctors say that regular movement is enough to spread the drug around the surface of the bladder.  They will give you instructions about what is right for you at the first appointment.  For me that wouldn’t have worked because I had bladder spasms when the drug was in me and the only way I could keep the drug in for the 2 hours was to lay down on my bed with a heating pad on my tummy.

    After a couple of hours you have to void the BCG.  I will warn you that first void out will hurt like a bitch.  Many of us describe it like peeing hot razor blades.  Subsequent voids hurt less.  For women I have always suggested pouring cool water over yourself as you pee out.  Sounds kinky I know but it washes the ares and greatly reduces the sting of the BCG.  Because of the nature of the drug and the albeit low risk of spreading infection it is not recommended that you use a public toilet for at least 6 hours post treatment so that would eliminate being able to use the toilets in a public workplace.  Once the treatment is completed you need to start drinking copious amounts of water to flush the remainder of the drug out of your bladder and system which obviously means more trips to the bathroom for the next day or so.  If your workplace doesn’t have a washroom close by or if taking frequent bathroom breaks would pose an issue at work, I recommend taking at least one day off post treatments. Another reason of course as mentioned is the side effects.  Some people manage to work through treatments just fine.  I did need the time off because of feeling like I had the flu and the treatment made me very tired so I would sleep a good portion of the day after but that it just me.  It may not happen to you.

    So long story short – plan to take some time off, but work if you feel able.  Best of luck and let us know how it goes.  Reach out to me if you have any questions. ((((HUGS))))

    #41590
    canuckfanforever
    Participant

    Hi everyone, thank you for all your thoughts & prayers for my husband and myself.  Sadly my husband passed away last Thursday.  I hold on to all the wonderful years we had together, and the fact that he is no longer suffering.

    I went for my cystoscopy on Wednesday, which was actually very easy and pain free.  I have my Turbt scheduled for Friday.  I asked the urologist if he was going to do the chemo into bladder at the same time and he said they don’t do that.  They will wait for the biopsy results (7-10 days) and then if necessary have me back again for the chemo, sorry can’t remember what that procedure is called).  Is that normal practice in Canada?  Doesn’t it make sense to do as soon as the tumor is out to prevent another week of possibly growing more cancer cells?

    This forum is great, there are so many positive stories it makes me feel so much better reading that people do quite nicely survive this type of cancer.  I am also working with an ND Oncologist and am now on whole foods plant based diet.  Not the best time for me to be cutting out my stress relievers (wine & chocolate 🙂  but now I look after myself.

    Appreciate anyone who can tell me if this is proper procedure or not.

     

    #41591
    Jack Moon
    Keymaster

    Normally treatments do not begin until the Urologist knows the type of bladder cancer, stage and grade of the tumor(s). Treatments for bladder cancer will vary depending on type, stage and grade. If any treatments are required. That was the case in my experience with bladder cancer.

    So so sorry about the loss of your husband.

    God Bless

    Jack

    • This reply was modified 3 years ago by Jack Moon.
    #41595
    Joe
    Participant

     

    Below is the description in 2021 Canadian Urology Association in regards to single intravesical chemotherapy immediately after a TURBT.  The reason is to kill cancer cells or fragments of the tumor which might land other parts of the bladder.  This is especially recommended for low-risk non-muscle-invasive bladder cancer which is not aggressive but re-appear often.   In 2004, there was a study done involving 1,476 patients, mostly low risk, where 1 immediate instillation of
    chemotherapy with either MMC, epirubicin or pirarubicin after TURBT was associated with recurrence rate of 36.7%, versus 48.4% for the TURBT alone, resulting in a 39% decrease in the odds of recurrence.    The most recent meta-analysis revisiting the topic in 2016 was published again by Sylvester et al, this time including individual data analysis of 2,278 randomized patients227. A reduction of 35% in the relative risk of recurrence was reported favouring SIC (HR 0.65, p<0.001), with 5-year recurrence of 44.8% versus 58.8% for TURBT alone (LE 1).

    Consequently, 2021 Canadian Urology Association in their guidelines for non-muscle-invasive bladder cancer states the single administration of chemotherapy after TURBT as follows.

    6.1.1 Single instillation of chemotherapy (SIC) post-TURBT
    – SIC (with MMC, epirubicin, doxorubicin, pirarubicin or gemcitabine) should be offered to all patients with presumed low risk NMIBC at TURBT and should be
    administered within 24 hours after endoscopic resection (LE 1; strong recommendation).
    – SIC is recommended for intermediate-risk NMIBC and for patients with ≤ 1
    recurrence/year and EORTC recurrence score < 5 (LE 1; strong recommendation). SIC should be discussed even when further adjuvant intravesical chemotherapy is
    planned (LE 2; weak recommendation).
    – The benefit of SIC in patients with high-risk NMIBC is unclear when BCG is planned as adjuvant treatment (LE 3).
    – SIC should not be administered after extensive resection or when bladder perforation is suspected (LE 3; strong recommendation).

    Because usually, urologists have to wait till the pathology report on the biopsied samples which are obtained during TURBT and it takes about a week or two for the pathology report to become available, if you wait for the pathology report, the chemotherapy cannot be administered within 24 hours after TURBT as per recommendation by CUA.

    FYI, Low-Risk NMIBC is a low grade, single tumor which is less than 3 cm.   Intermediate Risk NMIBC is low grade with multiple locations or a single tumor which is greater than 3 cm.  Hi Risk NMIBC is if the tumor is high grade or CIS or both.

    Any large metropolitan hospital with a cancer centre and/or affiliated with a university with a urology department will follow CUA guidelines.   I went to a local regional hospital without a cancer centre.   I did not get the intravesical chemotherapy after the initial TURBT, so I was not happy about it.    Because low risk NMIBC rarely progresses to high-risk NMBIC or muscle-invasive,  not having SIC may just mean that I have a higher chance of having TURBTs due to recurrence.  Still if SIC can reduce the chance of recurrence, I would gladly received SIC.

    best

     

    CUA guidelines on NMIBC (non-muscle invasive bladder cancer)

    https://cua.org/system/files/Guidelines/7367_NMIBC%20Guideline_Epub.pdf

     

     

    • This reply was modified 3 years ago by Jack Moon.
    • This reply was modified 3 years ago by Jack Moon.
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