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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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  • #8439

    I am new to the forum, but really looking forward to getting advice from like minded people who are trying to positively get themselves through a difficult time.

    For the last few years, I was experiencing some bladder related issues, that I determined was due to a bladder infection. Only after finding blood in my urine back in 2014, I was advised by my family Doctor that I should have that looked at. After having my first Cysto, in early 2014, the Doctor found 4 tumors in my bladder. Not happy with the first Doctor and his associated Hospital, my wife, my family Doctor, and I, did our research and selected St. Michael’s Hospital and the care of Dr. Kenneth Pace.

    Dr. Pace, did his own Cysto, in 2014 and did confirm that I had tumors in my bladder. I then had a TUBRT procedure done in the summer of 2014 and the tumors where sent out for biopsy. My wife and I where elated to here that the tumor had come back as benign.

    Each day, I continued to feel better and better, all signs and symptoms where decreasing, and I was enjoying the freedom of peeing like a “somewhat normal” human being until August. I felt that old familiar urgency and frequency, and lack of control. I scheduled a visit to see Dr. Pace again, and we began to see what was now bothering me. A few Cysto’s later and a few prescriptions later (thinking that I had a hyper active bladder disorder) it was found in March of 2015 that I in fact, have bladder cancer.

    I survived my first round of BCG treatments this summer, with all of the mentioned side effects, as well as having my back go out (not sure how that happened). In August I returned to work, after taking 21/2 months off from work as I felt I could function somewhat normally. In September I did my follow up Cysto, only to find that they where not happy with the level of healing and that they where going to postpone my “maintenance round” of BCG till January 2017.

    I am somewhat disappointed, not to see any progress or improvement in regards to my bladder and healing, I guess I was expecting to see or feel results. Is this normal or will I be normal again. Are my expectations too high?

    I guess this is why I am looking for help?

    Chris White

    #21107
    Jack Moon
    Keymaster

    Hi Chris

    Sorry you have had to deal with bladder cancer and BCG treatments. I believe your doctor is being cautious regarding your next set of treatments. Usually the maintenance treatments are with-in 3 months of your 1st set of 6 treatments. I would not be too concerned about waiting the extra time to insure your bladder has healed from the first set of treatments. I was diagnosed in 2005 had a few recurrences in 2006 and 2007 during BCG treatments. I did have 30 treatments in total from 2006 to 2009 and I am happy to say I have been cancer free since 2007. Many times I felt like you, when will or will I ever return to normal. I can say it took me about 1 year after my final BCG to return to normal. I have no urgency today, no pain, and I get a full night’s sleep without having to urinate. Just be patient and hopefully over time when your treatments are over you should get back to normal, but it will take some time.
    Wishing you all the best and do not be a stranger, as many of us here have experienced what you are going through and are happy to share our experiences.
    BCG = Bladder Cancer Gone
    Jack

    #21108
    marysue
    Participant

    Hi Chris:

    Welcome to Bladder Cancer Canada but sorry to learn that you have need of us as I refer to BCC “the club no one wishes they belonged to. However that being said it was the sanity of this group that helped me keep my head in a better place and things in perspective.

    The BC journey is an emotional one and like you, I thought I would never get to the end of the tunnel. I was originally diagnosed in 2008 with non-muscle invasive high grade, had a TURBT to remove 6-8 tumours and that was followed by 6 BCG treatments. All was well and good until a reoccurrence of a single high grade tumour in 2010 and of course the journey started all over again with another TURBT and 15 more BCGs for a grand total of 21. I had quite a few side effects with 2011 being pretty much a write off with feeling lousy.

    Side effects can last for a while and it isn’t unusual to be depressed or emotional. It does get better with time. I suggest taking time for you – doing things that you really enjoy. If you find yourself struggling really badly, I suggest that you seek professional help. It is common for cancer patients to need extra support especially during the treatment period. Sometimes its a coping “how do I get through this” issue; other times it is that some issues that you may have been dealing with intensify or come to a head at this time and it becomes too much on top of dealing with cancer.

    I found that yoga and acupuncture treatments helped along with talking to folks on the BCC discussion forum. I also journalled a lot. The release onto paper let me get a lot of emotions out. I filled two school notebooks. I later destroyed them so people wouldn’t discover them and read the contents as some of it was pretty ugly stuff. However, I felt so much lighter after letting everything out. I should have gotten extra help but didn’t mainly because I didn’t realize that I should and no one informed me of the resources available. So, I became my own self help and I’m now okay but it’s not the route I recommend for everyone.

    While having your next round of treatments postponed isn’t great as I’m sure you want to get them over with, I second what Jack said in that it is important for your bladder to be healed properly otherwise you could end up with a very inflamed bladder and/or a systemic BCG infection.

    To speed healing – I suggest drinking lots of water, peppermint and chamomile herbal teas. If you aren’t already doing this, avoid caffeine especially while doing BCG treatments- coffee, tea including green tea and any cola or energy drinks that have caffeine. Lots of us have found that BCG does inflame our bladders a bit and caffeine can aggravate the situation. This isn’t something that medical people will always tell you.

    I found that in addition to doing things I enjoyed, I treated myself to small rewards after each treatment and still do after my annual cystoscopy checkup. These treats for me were things like a new novel or magazine, a small inexpensive piece of costume jewelry or a favourite food treat. This helped mark milestones and lifted my spirits.

    I hope that these suggestions will give you some ideas. Take care and hang in there. We are here for you. Stay in touch and let us know how it goes. (((((HUGS))))

    #21109

    I am great full to have your support, and I realize that our medical system does a great to treat our condition, but who treats us mentally. I realize that, although my story seems long in my eyes, I am only in the beginning. This seems daunting at times, as I struggle to be productive at work, with my modified work load. I do have a million questions, but I will try to eat this elephant….one bite at a time.

    #21110
    marysue
    Participant

    Hi Chris:

    I found the mental part of this journey much more difficult than the physical. As mentioned in my earlier post I should have had help but was fortunate to work things through with the help of an acupuncturist, my son’s former tutor, programs at Wellspring Calgary, in addition to some folks on this site. Not everyone can do what I managed to do.

    I suggest if you are finding things overwhelming ask your family physician or urologist for a referral to a psycho-social department. The Toronto hospitals that treat cancer should have these people and a psychosocial department. You might not even need a referral.

    In Calgary, we have the Tom Baker Cancer Centre and they do have psychologists that help people cope with cancer and no referral is necessary. Sometimes people need a short term prescription to help them through it for anxiety or insomnia, others just need a few talk sessions with a professional to help them sort things out. Still some need everything. We are all unique and a cancer diagnosis affects us all in a different way.

    Toronto also has a Wellspring which is a cancer support centre for patients and their families. No referrals are needed and everything is free or nearly free since they run on donations. In Calgary, Wellspring is another source of peer support. I’m not sure how the Toronto centre is run, but Wellspring has a wealth of programs that are designed to help cancer patients of all stripes deal with coping with their cancer journey. I believe the Toronto Wellspring was the first one in Canada. Just google Wellspring and their website will come up with the contact info.

    I did take several programs at the centre here in Calgary and found them useful especially in lifting me out of my mental funk. For me, the Healing Journey and the Creative Journaling programs were the best. They have all kinds of other programs – music, exercise, discussion groups, support groups, presentations in addition to any craft/art stuff and no, you don’t have to have any specific skills or talents to partake.

    I think the point I’m trying to make is that when I did something different like one of these programs it did help lift the dark cloud and help me to see things from a better perspective. I hope that you will consider some of this. It could make a world of difference for you.

    You can also call the BCC toll free number and ask to be matched to a patient volunteer that has a similar diagnosis and treatment plan. That person will contact you and sometimes physically talking to someone is a mental up lifter too.

    Also, don’t hesitate to post any questions that you have. You have a wealth of experience on this site to tap into. The questions are many. This journey has a steep learning curve. Hopefully getting some answers to your questions will help your mental state as well. I hope my suggestions help. Let us know.

    Take care. (((((HUGS))))))

    #21155
    millize
    Participant

    Hi Chris Well it can be a long journey, so learn to celebrate any little progress. This isn’t the end, will change your life yes.As we all have you will ajust to all that comes your way.All the best moving forward

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