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My name is Peter and I am newly diagnosed with non-invasive bladder cancer, high grade. I just turned 67 and have always been active, team sports, ran marathons and participated in many triathlons and half Iron Man events. I eat a healthy balanced diet, drink little alcohol and have never smoked. I have well controlled asthma and no other underlying health issues. But, cancer plays no favourites.
We live in rural Ontario in an area with a “doctor shortage”. A couple of years ago our family doctor took a well deserved retirement. We have not been able to get another family doctor and must rely on our small local hospital’s emergency facility for routine care.
On June 14, 2019 I went to our emerg with a UTI. My urine lab work confirmed an infection and detected blood. Blood in my urine has been something I have had most of my adult life. My first cystoscopy was when I was 19 and I had another in my 30s. Both were clear. The attending emerg doctor suggested a referral to a urologist and I agreed. My cancer journey began. A cystoscopy on July 29th revealed a few”red spots” in my bladder but my urologist saw them as irritation or infection. The pathology came back “suspicious”. A second cystoscopy with biopsies was scheduled for October 31st. Once again my urologist doubted that the spots were cancerous but he did four resections and biopsies of the bladder and prostatic urethra. My right ureter was perforated in an attempt to reach my right kidney with the ureterscope and a temporary stent was inserted to assist healing.
On November 20th I received the news that pathology of my “red spots” revealed high grade papillary urothrlial carcinoma. BAM! On December 9th my stent was removed. I began BCG treatments December 13th and finished my first round January 17th. I have a cystoscopy scheduled for March 2nd.
We must travel 160 kms round trip to a larger hospital for everything. Thus far 14 times since July.
I like and trust my urologist. He answers my questions and has provided me with three information pamphlets produced by the Canadian Urological Association. But without a family doctor to guide me this is not enough. Without information you don’t know what questions to ask. For me, this void has been filled by this Bladder Cancer Canada website. The webinars and patient forum are most valuable. I know my road ahead will be bumpy but I now have a better map of that road. To all of you, the visionaries, the administrators, the doctors and specialists, the councillors and forum participants a huge Thank You. I am not alone!
Hi petertg:
You are very welcome! Long distance travel for surgery, tests and treatments is something that we hear a lot about at BCC. It is not fun at all. I’m glad that you have found this site and it has helped you and filled in some gaps.
I was first diagnosed in 2008 and BCC didn’t exist yet. While I didn’t have the long distance travel like you have, I didn’t have anyone to talk to until I discovered BCC by accident in 2011. The people here helped answer a lot of questions and yes, as you mentioned you don;t feel alone. I know in the beginning because I had noone to talk to, I thought I had a rare disease and I most certainly felt alone despite the good support I had from my family and friends. I certainly got surprised when I learned from BCC that BC is the 5th most common cancer in Canada. Of course, my first question was why haven’t I heard about it before and then learned it was due to lack of awareness which of course has changed a lot thanks to this organization.
Wishing you all the best and don’t be a stranger. We’d love to hear from you and how things are going. ((((HUGS)))
Hello Petertg,
You are NEVER alone. There are a few of us who are regularly moderating the Bladder Cancer Forum site to help others who are looking for some guidance and support in how to navigate this ‘journey’. Many of us are survivors – I for example am a 10 year survivor, Jack my co-moderator (and co-founder of Bladder Cancer Canada) is also a 10+ year survivor.
I am glad you found us and find relief in being able to read some of the stories we’ve shared.
I wish you all the best in your ‘journey’ and am sending you good, positive thoughts to help you along.
Keep in touch!
Thank You marysue and Nightingale for your support. Perhaps my biggest current issue is “waiting”. I am not very good at it. I like to be proactive and since my cancer is aggressive high grade I would like to respond in kind. Waiting for test results, cystoscopies, TURBTs and BCG treatments is somewhat challenging for all of us. I know that patience is a virtue so I pray for more patience.
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