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IMPORTANT: The Bladder Cancer Canada discussion forum is not a substitute for professional medical advice or treatment. The opinions & contents in this forum is for information only and is not reviewed by medical professionals. They are experiences & opinions of patient members like you, and is NOT intended to represent the best or only approach to a situation. Always consult your physician and do not rely solely on the information in this site when making decisions about your health.

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  • #8705

    I had been spending my time on our American equivalent site BCAN and found the link here, home!
    I am female, 51 yrs old
    More than a year and a half ago I noticed blood in my urine. I panicked! I was told at the Dr’s office that it happens sometimes when you do strenuous things. It happened intermittently after that which I basically ignored figuring I had done something strenuous, and gee I’m getting old, guess this happens.
    Oct 2012 I began to get more blood along with clots in my urine and had the back and flank ache to go with it. Went to the Dr and I said I must have a urine infection, so that’s what she treated me for. Within days I knew it wasn’t working and there was more to my problem. I let it go because I knew I had a physical scheduled for late Nov, waited this long, a little more couldn’t hurt. By this time some of the clots were bigger than the top of my thumb and I dared to pee into a jar so I could actually see how red it was since the toilet diluted it. WOW, I was scared!
    Since the first 2 Dr trips were replacement Drs, Nov was the first time I had seen my actual Dr. She was astounded that I had complained about the blood 3 times and said we will get to the bottom of this ASAP.
    I was scheduled for an ultrasound Dec 22. My Dr called me the next morning to say I had a 5 cm mass on my bladder and that I was scheduled for the first appt with uro – Dr Michael Cheng when he returned after Xmas. In the meantime, Merry Frickin Christmas! I did not want anyone to know, did not want to ruin anyone’s Xmas, made my husband promise not to tell anyone.
    Appt 7 Jan, Uro only said he booked me for TURBT 22 Jan, no checking, nothing. At this point, we still hadn`t told anyone.
    22 Jan – TURBT done, Uro said tumour was blocking right ureter and he had to dig to find it! Put in a stent to keep it draining. Extra day in hosp because urine was not coming out clear at all and I was drinking copious amounts of water. Still hadn`t told anyone, not even family!
    I hope I`m not rambling!
    Because I didn`t have the patience to wait for my follow-up with the Uro and knowing my GP would get a copy of the pathology, I called her and got the news, low & high grade urothelial carcinoma in the 2nd layer – T1 (I assume). OMG, I have Bladder Cancer! Slowly we start to let family know, only to find out my sister had the same in 2007!
    Feb 6 – Follow-up with Uro. To start 6 week BCG treatments 21 Feb with a 3 year maintenance plan. CT scan to follow to see if there is any kidney damage because of the blockage.
    20 Feb – CT scan
    21 Feb – first instillment, no issues. Planned ahead and had pyridium prescribed, as well as belladonna/oppium suppositories (just in case). Before going for treatment I had 1 pyridium, 1 Motrin and 1 Benadryl. Started drinking copious amounts of water at the 90 minute mark, held to the 3 hour mark and no burning, nothing! Phew! Let’s hope the rest are as easy!
    During the treatment I ask Uro if he happened to have CT result, he does.
    I have a distended kidney, bladder wall thickening and to top it off, a kidney stone! I should have asked what it means for the first 2 but I didn’t. Anyone have any insights?
    I find myself this evening for the very first time since this journey started, crying! I am an extremely strong person, or so everyone says. I had been wondering when this would happen because I knew it should, but hadn’t till now.
    There, I have put it all down! Thank you all so much for bending your ear, or eye! It is great to find a network of people, knowing I’m not alone in facing this monster!


    Thanks for sharing your long journey to diagnosis and treatment with your Canadian friends. Sadly, this is a story that is repeated far too often, particularly with women, but not exclusively so. Bladder Cancer Canada is doing everything it can with the help of so many people to bring awareness. Perhaps you’ve heard of the ads or seen them :”See red, see your doctor.” Check it out on our home page.

    The medical stuff is best left to medical people and others with more experience and some on this site are better suited to speak about that from a more educated point of view, Jack Moon, our president being one of them. Jack can also comment on the best uros in your area (maybe you have one of them, I don’t know), London having some top ones in the country. For sure, being treated at a major cancer hospital is essential and I highly recommend that if you are not already doing so.

    One point I noted in your story. You mentioned holding the BCG for three hours. In my experience, two hours is the norm and in some places only one. Three is a new one on me. Perhaps others will comment, but that might be worth checking on. The side effects tend to get stronger as the treatments go on for many and most after three of four have some issues, though my own were not too severe. I would think the thickening of the bladder wall would need to be closely watched. I too had that and it ended up not being a good thing, though every patient is unique and not all symptoms are identical.

    51 is not old! It just feels that way some days. We understand that in this club of ours that no one wants to be a member of. Keep us posted. Others will for sure address some of your points. We’re with you, for you and supporting you.


    Jack Moon

    Hi Kimmc

    Sorry that you have been diagnosed with bladder cancer.
    Being diagnosed with T1 high/low grade, usually the Uro would do a re-turbt approx 6 weeks after the first turbt to insure that the tumor was completely removed and that it did not penetrate the muscle of the bladder.
    This is the procedure recommended by the Canadian Urologist Association, and practiced by the top bladder cancer specialists at cancer and teaching hospitals.
    BCG should normally be held in the bladder for no more than 2 hours so it does not inflame the bladder wall too much. I recommend you ask your Urologist about that subject.
    You live very close to a cancer centre in London with 2 top bladder cancer specialists. If you ever are in need of a 2nd opinion, we can assist you with that process.
    All the best with your BCG treatments.
    BCG = Bladder Cancer Gone


    HI Kimmc and welcome to our site!

    Sorry to learn of your diagnosis but I strongly recommend considering the advice from Jack and Greg. I am female also and was diagnosed with TaG3 (noninvasive, high grade) at age 50 in the fall of 2008 and a reoccurence of a single tumour (same diagnosis) in the summer of 2010. If your kidney shows distension it is possible that was the result of the ureter being blocked for some time. The urine was continuing to back up into the kidney. The kidney stone could be causing issues too depending on its location and size. I would have a serious discussion with your uro about what to do about the kidney stone, distention and monitoring the thickening of the bladder wall. I suffered from kidney stones and some damage to my left kidney as a child due to my left ureter being too narrow and kinked (birth defects). The kidney stones were removed and the ureter repaired but it wasn’t an easy process. However that being said the surgery has come a long way since 1965.

    I have done 21 BCG treatments and did find that the side effects got heavier as time went on. Some people are fortunate and that doesn’t happen. I would query holding the BCG for 3 hours. The max i’ve heard of is 2. Some places say 1 is enough. Where I go the norm is 2 or as close to that as you can get. I had to cut a couple of thenm short due to an over full bladder and a lot of bladder pain and spams. Best of luck and keep in touch. We will support you along the way.


    Hi Kimmic:

    Sorry to hear of your diagnosis. I also was diagnosed a year ago and have had two TURBS and one round of BCG’S. I had my BCG’S in London and only to hold it for one hour. I stayed the whole time and was monitored and after the hour voided and left. Never heard of 3 hours. Your uro is the same as my husbands. I also am a female in my mid 50’s and was petrified when I seen blood. I went straight to the E.R. and they said I had kidney stones. The next day I had an ultrasound and they found a 5 cm mass on my bladder. Stupid as it sounds I had heard of bladder cancer but knew nothing about it or never knew anyone that had it. Now I hear more and more people are diagnosed. Many young. This site was so informative to me and have had a lot of support here. Very best on your journey.


    Hi Kimmc. I am glad you found our site. I too am female, and was diagnosed with stage 2 high grade bladder cancer at age 40. Like you, that news sent my world into a tail spin. You are doing all the right things…. you are taking charge of your health by asking questions and staying on top of the results. I never had BCG, so I can’t offer you any advice there. But I will say that once found, bladder cancer can be treated and you can still live a good life. Take comfort in the fact that it was found and now you can fight it with everything you have – including those of us here! We are here to help. Good Luck!


    Thank you all SO much! Everyone is very helpful!
    BTW, I didn’t HAVE to hold it for 3 hours, I did because I wanted my bladder to be as full as it could possibly be! In my opinion, diluted BCG should cut down the burning!


    Careful with BCG! It is a very caustic substance. Not sure what your medical and/or pharmacological background is, but probably best to play by the rules with this.

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