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Homepage – Forum Forums Non-Muscle Invasive Bladder Cancer New to the forum and my experience/observatiom

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  • #35951
    phg
    Participant

    I was diagnosed with Non invasive bladder cancer a year and a half ago. I live in St. John’s, NL and I’m new to the forums. When I was diagnosed it was a single small high grade tumor. It was removed in March of 2017 and since then I’ve had the BCG treatment and several follow up cystoscopies.  Thank God all has gone well so far. That it has taken an emotional toll. In fact every time  I go to the bathroom there is considerable anxiety that I’m going to see blood. Everytime! I expect this is something I will have to live with the rest of my life but I’ve often wondered if others have the same feelings and how do you cope with this? I’m glad to be with the forums and there is indeed strength in numbers.

     

    Paul

    #35954
    Joe
    Participant

    testing

    #35955
    Nightingale
    Keymaster

    Hello Paul,

    I am a 10 year survivor.  In my case the cancer came back 3 times and after the third procedure; followed by check ups every 3 months, then every 6 months, then yearly and finally no more check ups.  I have always been physically active; from running, swimming, biking and golf, I tried to maintain a good fitness level.  In that 10 year span and even now, I ‘think’ about the possibility of blood in my urine and I observe every time, especially after a vigorous workout, since that is what triggered an increased flow of blood and saved my life.

    I have the mind set that if I see blood, I will go straight away to have a scope check and have it addressed immediately.  I view the sight of blood as a good visible indicator that I’d rather be aware of, than not.

    I don’t worry about it, because I know I can address it.  I hope I am making sense.  I am now 62 years old and enjoying every waking moment.  I am retired from full time work and enjoy the volunteer work and some part-time work that keeps me mentally engaged and active.

    I hope this is helpful.

    my best.

     

    P.S., Welcome to the Forum and for submitting your concern.  We are here to help!

     

    • This reply was modified 4 years, 10 months ago by Nightingale.
    • This reply was modified 4 years, 10 months ago by Nightingale.
    #35966
    Jack Moon
    Keymaster

    Hi Paul

    My 1st few years after a couple recurrences I felt the same. But as time passed those feelings left. But I still do watch my pee every time I urinate, just habit I think.

    Good luck to you and welcome to the forum.

    Jack

    #35968
    Rick B
    Participant

    Hi Paul,

    Much the same here. I had 2 recurrences over a period of 15 months and my last BCG treatment was Oct 2013…I’m 68. I’ve been cancer free for nearly 6 years.  Even now, I think about it and always check for blood. I had 3 month follow-up for 2 yrs, then 6 month follow-up for nearly 3 years and am now on annual checks.  I’ve accepted the fact that it could recur as BC has a high recurrence rate and so having a check keeps me at ease a bit. I know that if I see blood or have urgency need to void does not necessarily mean it is BC but it is an early warning signal that needs to be checked out.

    Welcome to this forum…I’ve been connected since early 2013 and want you to know that the folks here are very helpful…reach out anytime. Also, having lived most of my young adult life in NL it is great to hear from you. Was born in C’ville area and spent many years in St. John’s/Mount Pearl before moving on in the mid 70’s.

    Stay well…God Bless.

     

    Rick

    #35988
    marysue
    Participant

    Hi phg:

     

    I too, like the others here still watch my pee when I go even though I’m almost 10 years out from the last occurrence.  I too,  think it is from habit more than anything else.  I’m no longer afraid because of the knowledge that I’ve gained about bladder cancer and I know what to do about it.  I also believe because of the changes I’ve made in caring for myself that I’ve done the best I can to lessen the chances of recurrence.

    I’m down to annual check ups and next year all being well (10 years cancer free) can choose to graduate to 18 month, 24 month check ups or cut loose altogether.  I’m most likely going to choose 24 month checkups mainly to stay connected to my uro (whom I really like) so should I have an issue, I won’t have to start the process all over again with someone else. I have found that as I graduated to the next level of checkups it helped lessen my fear of recurrence because I have come to realize that as time goes on and there is no issue, I’m increasing the likelihood of remaining cancer free.

    You’re right about the emotional toll that BC takes on you.  People at BCC have said that dealing with BC is like an emotional roller coaster especially when dealing with recurrences and if there is any progression with the disease. For some it is a real wild ride. I have always recommended for anyone that is having difficulty coping psychologically get help from a psycho-social resource.   I should have done this but didn’t know about it at the time.  Several people have followed my suggestion and found it helpful.  Best wishes to you for remaining all clear.  ((((HUGS))))

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