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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.

Viewing 9 posts - 1 through 9 (of 9 total)
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  • #8571
    Nettie
    Participant

    My husband was diagnosed with bladder cancer when he had a TURBT on Sep 12th. Second TURBT on Oct 12th.
    Pathology states: Papillary urothelial carcinoma, high grade
    Carcinoma shows invasion of lamina propria,
    Concomitant carcinoma in situ
    Muscularis propria identified and is negative for carcinoma
    Negative for lymphovascular invasion

    He is now receiving BCG treatments. He is having his 4th treatment tomorrow.
    1st treatment – no problem
    2nd treatment – chills a couple of hours later, Tylenol took care of it. Joint pain 2 days later but could have been flu instead of BCG related
    3rd treatment – much bladder spasm and burning for 6 hours starting 2 hours after treatment.
    Sent an email to the oncology nurse asking for advice for the treatment tomorrow. An oncologist called my husband and said to call our urologist (we have a very good one). However the oncologist was very understanding and made my husband feel more positive.
    Because my husband is a truck driver and would be out of area, I called the urologist office and his nurse said the Dr was in surgery today but would likely call back yet or send a Rx to the drug store. They had already received an email from the oncologist.
    My husband had very bad bladder spasms after his TURBTs and I’m wondering if he has a very sensitive bladder. He did have a bladder infection after his second TURBT. The nurse in urologist clinic said she had never seen a patient with such bad bladder spasms with TURBTs before and not with a 3rd BCG treatment either.

    Does anyone have any suggestions? Hopefully the BCG treatments will help him! I think we are still at the stage of not being totally positive about the outcome! This site is great. I was on a couple of other sites before this one that were very scary!!

    #22035
    Jack Moon
    Keymaster

    Hi Nettie

    Sorry your husband has developed bladder spasms which is quite common when undergoing BCG treatments. I personally did not get the bladder spasms until my last 18 treatments and they were not too severe but my Urologist did prescribe Detrol which did help in my case. Everyone seems to have varying side effects with the BCG treatments. BCG treatments are the gold standard for non-muscle invasive bladder cancer. In my case after a couple small low grade recurrences and 30 BCG treatments including 12 maintenance treatments I have been all clear for 10 years. Hopefully the BCG treatments also keep the cancer at bay for your husband like they have for me.
    Do not hesitate to ask our members any questions regarding your husband’s journey with bladder cancer, we all are very happy to share our experiences.
    All the best,
    BCG = Bladder Cancer Gone
    Jack

    #22036
    DDep
    Participant

    Hi Nettie,

    It is good you reached out to Bladder Cancer Canada
    I am sorry to hear that your Husband has been diagnosed with Bladder Cancer.

    From your post it appears that he has Non-Muscle Invasive Bladder Cancer (NMIBC) as T1HG with CIS. He is being treated with BCG according to the Canadian Urological Association guidelines. There is a very good success rate in “curing” CIS with BCG.

    Side effects from BCG varies for everyone. But the general side-effects include:
    Chills, frequent urination, Burning during urination, slight blood in urine. All should pass in 24 to 48 hours.

    I am being treated with BCG over the past 2 years. I was diagnosed with a “large” TaLG tumor in July 2015. My risk for recurrence was Intermediate.
    Personally, the BCG “lays-me-up” for 24 hours. I get the symptoms mentioned, as well as bladder spasms. During BCG treatment, for the first 12 hours, I have to go to the bathroom every 20 minutes and sit there for a few minutes. I stay in bed and have access to an ensuite bathroom.

    The most important thing I can say is …. stick with it ! BCG is the “Gold Standard” in treatment.

    As Jack says, “BCG – Bladder Cancer Gone”.

    God Bless

    DDep

    #22037
    Nettie
    Participant

    Thanks for the reply Jack. The urologist had already faxed a couple of prescriptions to the cancer clinic by the time we got there. Pyridium, oxybutynin chloride and Toradol. The nurse did have problems inserting the catheter and it bled when she withdrew it. She seemed a bit concerned about that. It is now 2 hours past treatment and although he can feel something is going on, he doesn’t have the bladder spasms he had last week. Has drank almost 2 liters of water already.

    DDep, Yes you got the diagnosis spot on! This is our first kick at BC so as you can imagine our thoughts go all over and way out of control at times. We are definitely praying for success with the BCG.

    Thank you to both of you for responding. I like the BCG – bladder cancer gone!

    #22042
    marysue
    Participant

    Hi Nettie:

    Welcome to Bladder Cancer Canada but sorry that you have need of us. I too, am a survivor of BCG treatments.

    I experienced low fever, lots of chills, fatigue, headache, muscle and joint aches and pains, brain fog, bladder and urethra irritation and burning and bladder spasms while doing treatments.

    For me, regular pain killers were enough to help. Aleve was the best with all the symptoms. Additionally, I found heat really helped with the bladder spasms. I would hold a hot water bottle or heating pad to my bladder area and the heat calmed everything down. I would also take a pain killer about 1 hour prior to treatments. That was at the recommendation of the BCG nurses and it helped me.

    I usually needed to take pain killers for about 24-48 hours post treatment to deal with the side effects. Side effects started to wear off once the treatments were finished but it took a few months for them to go away completely. As time went on I would have a few good feeling days and those days gradually out numbered the lousy ones. The thing that kept me going was the belief that this was the best thing to help me defeat bladder cancer. I was determined not to lose my bladder.

    I suggest asking if your hubby could/should take any of the prescribed antispasmodics prior to treatment instead of as needed in order to be able to stay on top of the spasms rather than chase them once they start. Hope my comments help. Take care. ((((HUGS))))

    #22046
    Nettie
    Participant

    Hi Marysue. Yes definitely this is not a place we want to be but are thankful for bladder cancer people who are willing to share their experience and expertise.
    I spoke to the uro’s nurse today as hubby has another BCG treatment coming up day after tomorrow. She advised for him to take 200mg of Pyridium the morning of the treatment and Oxybutinin Chloride and Toradol one hour before treatment. She also believes his bladder spasms and doesn’t allow the catheter to be inserted. She thinks this will relax his bladder enough to not have such a painful experience. Last week he didn’t experience bladder spasms after the treatment, due to meds.
    So we’re the BCG treatments successful for you? I’m hoping and praying they will be successful for my husband. We have a 4 hour drive, one way, for BCG treatments.
    Thank you for responding to my post. wishing everyone on this site God’s Blessing!

    #22051
    marysue
    Participant

    Hi Nettie:

    Wow! That is a long drive for a treatment. I thought I had it tough with a 45 minute to 1 hour drive. To answer your question; yes, BCG treatments seem to have worked for me.

    I was first diagnosed with non-muscle invasive high grade bladder cancer in September 2008. I had several tumours. I had a TURBT surgery (scope surgery to remove the tumours for biopsy) and that was followed with 6 weeks of BCG treatments (once a week for 6 weeks). All was well until July 2010 when a small tumour was discovered at my cystoscopy check so I had to start all over again with a second TURBT surgery and that was followed up with 15 BCG treatments that were a second set of 6 and 3 sets of three (once a week for 3 weeks). My second set of 6 BCG was in November-December 2010 and the sets of 3 were in March, June 2011 and the last three in January 2012. I have been clear ever since and am down to annual cystoscopy checks – the next is in March 2018.

    I too, believe that some of the issue that I had with bladder spasms was due to the catheter. I had an awful lot of spasms post op when the catheter was still in there overnight. I needed painkillers and heat to calm it down. The intrusion of a catheter for the BCG did the same thing. I do have some spasms after a cysto exam but not as bad. For the last few cystos I have asked for extra Lidocaine gel to be inserted into my urethra pre-exam and I’m starting to think that that helps. This is only speculation, I don’t have any proof, but I think that the extra gel goes further down and numbs the entry way to the bladder. I have a nerve near there and it gets dinged when a scope or catheter goes in but with the extra gel I don’t feel it. Maybe ask the nurse if this could help your hubby? Just a thought.

    I hope and pray for the same success for your hubby. As Jack says BCG=bladder cancer gone. Take care and let us know how it goes. (((((HUGS)))))

    #22056
    Nettie
    Participant

    Hubby completed his #5 BCG treatment yesterday and the meds to relax his bladder worked! The treatment went without pain and he had maybe a half hour of chills last night and that was it! So thankful for that, he has one more to go!

    #22057
    Nettie
    Participant

    Marysue, thanks for telling me about your successful cancer journey. I pray March will bring great results for you again! Hearing such a success story helps us to trust these treatments can do the same for my husband. One more treatment next week and then a cystoscopy beginning of February. Praying for success so he can go on to maintenance. We realize there will most likely be a reoccurrence at some point but pray he will get a reprieve for now.

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