Bladder Cancer Canada Support

Bladder Cancer Awareness - Support Network

Up to this point...

You had a symptom, you sought advice, you underwent tests, you had a follow up consult, a referral to a urologist, a further examine, a cystoscopy, further blood and urine tests, maybe another imaging scan, a TURBT to remove tumours from the bladder, a follow up pathology report followed by BCG treatments.

You may not have had that total experience, but that is where I was at in my journey from diagnosis in early January, surgery in March and BCG in May/June (first six weeks of induction).

In a time of "all clear"

Coming through all of that, you might now be at a stage to plan your continued journey with bladder cancer. Those of us with non-muscle invasive bladder cancer are reminded and conscious of the fact that there tends to be a high recurrence of the disease. In that regard, we tend to think of how we can ensure that the cancer does not return. Given that I underwent 18 installations of BCG, followed by three month check-ups, extended to six month check-ups and now annual check-ups - I'm feeling pretty good with my latest "all clear". However, I know that I need to be in tune with my own body and be on the watch for any possible signs and know when I might need to dial back in with my urologist.

Seeking Support

Through my own journey, I had initially reached out through the Bladder Cancer Advocacy Network of America (BCAN) and their Inspire Network. When I was googling at the time, that seemed to be the most prominent patient support network. Interestingly enough, they were kind enough to refer me to Jack Moon in Canada. Jack is one of the Co-Founders of Bladder Cancer Canada. He and David Guttman founded Bladder Cancer Canada in 2009. In the past couple of years, thanks to some support through Paul Kraemer and his expertise, Bladder Cancer Canada (BCC) has worked hard at rising up through the google search ranks and are positioned well as the Canadian patient support network.

Defining Your Support Needs

Depending on your own personal needs, you will know what kind of support you require. My first suggestion is to rely heavily on your own family, loved ones and neighbours. No doubt they are concerned for you and want to help you along your journey. Take them up on it! On the patient support front, I strongly (remember I'm volunteer Chair...) recommend the resources at Bladder Cancer Canada.

Bladder Cancer Canada is there for you. They/We offer patient support through a number of different channels. There are terrific patient guidebooks covering the range of bladder cancer that you might be facing. There is a help line and contact form. We have a presence on all social networks - Facebook (main page and community pages) - Twitter - Instagram - LinkedIN, where you can engage in a direct and personal conversation or post publicly for others to learn. We have a discussion forum that is moderated and managed by a team of volunteers to guide you along your journey. BCC also has a YouTube channel with past webinars and presentations that will support you along your bladder cancer path. In several centres across Canada there are ongoing patient support groups for people to engage with each other and share learnings from their own experiences with bladder cancer.

Supporting You

No matter what your needs might be as a patient faced with bladder cancer - our team at Bladder Cancer Canada is here to support you.

Wishing you well.

@FergDevins


bladder cancer awareness

Bladder Cancer Awareness - Get Involved

Your Journey

Remember those words your first heard "bladder cancer". Your world was on hold, your mind was idle, your heart raced, your focus was gone for moments. Yet, you pulled through that initial diagnosis - determined your course of action and here you are today ready this blog post along your current journey with bladder cancer. You made it ! YOU are now a wonderful example of someone who has dealt with bladder cancer and is moving forward with your life. Yes there have been adaptations and bumps along the way, but  you have adapted and your are thriving as a bladder cancer survivor.

Spread the Learning

There is a unique opportunity for you to engage in the bladder cancer community and share your learning. After I had been introduced to Bladder Cancer Canada by a referral from the Inspire Network in the USA to Jack Moon - Co-Founder at Bladder Cancer Canada - I found the wonderful resources at BCC. I endeavoured to do a walk for bladder cancer in my summer community of Kenora, Ontario and went on to raise close to $50,000 dollars for the cause that year. (Thanks to my wonderful network of family, friends, former colleagues and acquaintances across Canada and around the world). My intent was to "give back" and do something to support the fine work at Bladder Cancer Canada - and to hopefully help others who might be facing this disease.

Here's Hoping that YOU will Get Involved

I chose first to do a walk in Kenora. I always smile when I think of that story. I had called Bladder Cancer Canada and the Executive Director advised that there was a walk in Winnipeg - close by. I explained that I wasn't going to make the two hour drive to walk in Winnipeg - I wanted to walk in my community with family and friends. We had a wonderful walk, I connected with family and friends AND I connected with other bladder cancer patients in Kenora!  The walk rose awareness and funds for BCC.

So...YOU...might find what you see as an opportunity to help generate awareness or raise funds for this worthy cause. OR...you might decide that you would like to volunteer as a peer to peer support person. These patients support patients along their journey. Let's face it, you leave your doctor's office with confidence in their medical care - but you have so many other questions and concerns that a patient can support "peer to peer".

Perhaps you will WALK this year in the Bladder Cancer Canada Awareness Walk when Canada Walks for Bladder Cancer September 25th and 26th. (the site at bccwalk.ca will launch June 14th) Or perhaps you will partake in a patient information ZOOM call. Or perhaps you will help with one of the local Facebook pages on posting content. Or perhaps you can assist with French translation for the francophone community. Or perhaps you know of potential sponsors for our walk to call upon for support. Or perhaps you know of someone leading a foundation that might provide funding for our programs and or research. Or perhaps you will make yourself available to speak with a patient that has a similar profile to for support along their journey. There are endless opportunities for you to get involved.

Your Participation is Impactful

Just know that how you decide to get involved and whatever action you take will have IMPACT for Bladder Cancer Canada and for our patient community. Your participation is invaluable. We at Bladder Cancer Canada are truly only as strong as our volunteers and their support networks. Our success is based on the fact that we were Co-Founded by two patients and our focus has been on patient support from day one, along with awareness and funding reasearch. Patients are job one!

If you are interested in participating or connecting feel free to write me at fergd@bladdercancercanada.org. We'll find a role for you at BCC!

My Experience - So Worthwhile and Rewarding

After my walk efforts in Kenora I was recruited by Co-Founder David Guttman. We were going to meet for a coffee on Bayview and ended up enjoying a nice cold Molson Export together. So much happens after a refreshing ale! I joined the Board at BCC, then became National Walk Lead for a couple of years and have been the current Board Chair the past three years. I am so proud to be part of this vibrant group of volunteers. It is a great place to help make a difference. I hope more will join our efforts and get involved.

@FergDevins


BCG

Bladder Cancer Awareness - BCG Treatments

Standard Care Treatment for Non-Muscle Invasive Bladder Cancer

As per my last post, I was diagnosed with non-muscle invasive bladder cancer and after my TURBT and the pathology report, it was classifed as a Ta high grade disease. Thus, my doctor suggested that I should follow up with the standard recommendation of BCG (Bacillus Calmette-Guérin) a treatment, in my case post surgery, after the removal of the two tumours.

BCG (explanation directly from Bladder Cancer Canada site)

Once the bladder has healed from your diagnostic TURBT, a second TURBT may be performed within about six weeks if the tumour was aggressive. A drug called BCG (Bacillus Calmette-Guérin) may be inserted into your bladder through a catheter once a week for about six weeks (intravesical therapy).

BCG is a weakened form of the tuberculosis mycobacterium which stimulates immune responses within the bladder to destroy the cancer cells.

You’ll hold the BCG inside your bladder for up to two hours. Medical facilities have different treatment protocols, but you may be asked to spend time lying down and perhaps rolling on each side and front and back to ensure the chemical makes contact with the whole bladder lining.

Maintenance treatments of BCG may be prescribed to reduce the risk of the tumour recurring. This often involves a three-week treatment plan every three to six months for up to three years.

The initial treatments usually produce few if any side effects, but as the treatments progress, you may experience burning when urinating, a sense of urgency to urinate or the need to urinate more frequently. Some people report fatigue and a mild fever, achiness and nausea. There can be severe reactions, such as pain, inflammation and bleeding, but these are not the norm and diluted or reduced amounts of BCG can be given to help combat these side effects.

The Treatment Process

At Sunnybrook Hospital, urology department, I would visit the cystoscopy suite for my course of treatments. The first cycle was six treatments over six weeks beginning in May of 2014, with a break, and then three weeks of treatments, with breaks up to December 2015. I would make an effort to get in for the earliest appointment in the morning. The procedure involves dropping your drawers and then covering yourself up. The nurse will prep the area, provide some freezing gel for the urethra, insert and catheter and then put the BCG up into the bladder. It takes a matter of minutes. You then expected to return home, go about your day or lay down and "baste". After two hours you can start to "drink like a fish (as one nurse suggested) and then start to pee the stuff out. My ritual was always going home and making a nice big pot of Lipton's Chicken Noodle soup, followed by glasses of water all day long - with intermittent pee sessions - until everything was running clear by the evening. There was some burning session, but nothing too severe. The day of the BCG installation I felt pretty drained, groggy, just worn down. However, awakening the following day I felt a renewed feeling of energy and was back feeling top notch. In the last few installations of BCG I would actually see blood when I was voiding. This was surprising to me, because it was the only time that I had actually seen blood in the urine. All said and done after 18 installations (6-3-3-3-3) I was complete. After 18 installations, Dr. Kodama suggested that I call it "complete". Touch wood - I've not had to return for any more BCG treatments.

Check ups...

I did return for Cystoscopies after BCG treatments on a regular 3 month interval, that then got extended to six months and now I have been on an annual visit in November for annual check ups. So far so good. Love to hear those words - "All Clear for another year, see you in twelve months".

Note

As I have stated in previous blog posts on my bladder cancer journey, this is my own experience. I know in speaking with other patients that some had other experiences. Some folks really find the cystoscopies uncomfortable, or the BCG treatments intolerable. I just found that with each procedure the most important factor is to attempt to relax. If you can be as calm as possible, and not tense up muscles, you will have a fairly pain free experience. The other critical factor was to drink plenty of water - like a fish!  I always remarked that it is amazing what you get used to along the journey to beat bladder cancer!

@FergDevins

 

 

 


Staging Bladder Cancer

Bladder Cancer Awareness - Staging / Grading

Images and Test Results

As patients of bladder cancer we will have experienced that first session with our general practitioner, where they have most likely had you undertake some sort of imaging to determine what might be going on internally. From that stage you likely visited a urologist who would have undertaken more tests and possibly proceeded with a cystoscopy to examine the inside of your bladder.

At this point, you have had a number of tests or scans to narrow down the diagnosis. These tests or images will also determine your course of action, treatment for the weeks and months ahead to wrestle this bladder cancer to the ground.

Pathology

In my case, in March 2014, I was in for a TURBT - resection/surgery to remove two tumours from within my bladder.

From those tumours there was pathology undertaken to determine the stage and grade of my bladder cancer. After my surgery I returned to my urologist to test the bladder with a flow test. Successfully completing the flow test, we reviewed the pathology report and determined the next course of action for follow up treatment.

Today - so many of us as patients have full access to our "charts". Whether it is the Life Labs or Hospital or Institution My Chart - we often have the test results before our doctors have even read them, let alone book us in for a follow up appointment.

Don't Do this at Home on Your Own

CAUTION - your pathology reports or tests results should only be interpreted and consulted with you with your doctor. Your own interpretation is not professional nor knowledgeable. I always chuckle when I first read a CT scan report and something was indicated as "unremarkable". Gosh...you would think that something unremarkable would not look great. In fact the "unremarkable" actually means that there is nothing of concern. You might like to take a peek at your results, given that you will likely have access before you see your doctor. Just be cautious on trying to interpret their meaning on your own. What you might do is have a peek and prepare yourself with questions, based on what you are reading on the report. That will be helpful to your doctor or urologist to be prepared for the minutes that you will have together.

The other caution is to understand that your results might be very different than a friend or acquaintance's results. For instance, I had non-muscle invasive bladder cancer. My pathology report indicated that I had "Ta high grade disease". Thus the actual tumour in the bladder was non-invasive papillary carcinoma - that being that it had not gone into the wall of the bladder. However, the "high grade" means that it could in fact become of concern and aggressive. Thus, my course of action was to undergo a series of treatments with BCG (more to follow on that).

Stage and Grade

This Bladder Cancer Canada is a really clear snap shot of Stage and Grade information - with a visual - I think you will find it useful.

At Bladder Cancer Canada we are prompted by our Co-Found Jack Moon and continuing to make understanding medical terms in layman terms so that people can have a better understanding of what they are facing, what has been done and what still needs to be done on their bladder cancer journey.

Next post...

Next  up will be BCG - the treatment that I underwent as a follow up to my "Ta high grade disease". I sit here in May of 2021 still "all clear". Cheers to that !

@FergDevins


Bladder Cancer Awareness

Bladder Cancer Awareness - The TURBT

Transurethral Resection  of a Bladder Tumour

The TURBT. The transurethral resection of a bladder tumour. This was the procedure that I underwent at Sunnybrook Health Sciences with Dr. Kodama. I arrived prior to 6am in the morning to check-in, after having completed pre-surgical screening a few weeks prior. I was prepped and then held in a queue to be taken to the surgical floor. A resident intern greeted me and provided me with reassurance and some pre-op conversation. I then proceeded to the surgical suite where I was comfortable but under general anesthetic for the procedure. When I awoke in the recovery room I still had a catheter attached and the Dr. reassured me that the procedure had gone well with no complications. The critical factor was to see how the bladder was clearing into a container at the end of the bed. I was overnight with a return visit from the resident intern ensuring that I had rested comfortably. A neighbour, a retired nurse, was working the recovery ward. By mid morning I was peeing quite clear and all systems were go. I was released by noon that day heading home to rest comfortably.

No complications

I was fortunate that I did not have any complications. I have heard from others who may have experienced some clotting or had catheters in longer or returned home with catheters. My catheter was removed before I left the hospital and I returned home in comfort. I continued to drink lots of water to ensure the bladder was functioning well. I was to return to the doctor within a few weeks to assess the pathology report and determine what steps would be next in my bladder cancer journey - more to follow.

Great resources to Review

Bladder Cancer Canada offers very complete and informative patient guidebooks. All the details pertaining to non-muscle invasive bladder cancer and the approaches to dealing with it are included in this resource.

Bladder Cancer Advocacy of America has a great description of the TURBT on their website.

The Cleveland Clinic has a very straight forward summary of the TURBT.

An animated YouTube video from PreOp.com is a good overview of the procedure of TURBT.

Some surgeons may use a blue light for the TURBT procedure - more information here related to the us of blue light.

Wishing you well on your journey. After your TURBT the doctor will want to see you for a post surgical discussion to assess what they found with respect to the stage and grade of your bladder cancer and what your courses of action will be for follow-up. More to follow.

@FergDevins

 

 


WBCPC

Bladder Cancer Awareness - Between Diagnosis and Surgery

My Reflection

I remind folks reading this series of blog posts related to my own non-muscle invasive bladder cancer journey that these are reflections related to my own personal journey in 2014 and forward. Each individual may have a slightly different experience, or a drastically different experience in their bladder cancer journey. I am hopeful that my posts are giving some helpful insights into my own journey - which may in some respects be similar to what others are experiencing or have experienced. In many ways I was fortunate to have been diagnosed with non-muscle invasive bladder cancer. I was diagnosed early, got it out of there, underwent treatments with BCG (more to follow) and in my mind I have been all clear since my TURBT in 2014.

Between Diagnosis and Surgery

There was that period between being diagnosed with what was assumed to be two cancerous tumours and the date of surgery. My urologist also mentioned that one of the tumours was close to a ureter and could potentially be cause for concern on possibly impacting that ureter.

Seeking More Information

So...where does one turn after leaving the office of the urologist being told you have bladder cancer and your surgery is scheduled for March 24 !?

Telling Family and Friends

Firstly, my wife was always moments away walking in the park behind Sunnybrook "on the ready" to pick me up. She arrived at the lower level and naturally asked "how did it go?". Well I said, I am diagnosed with bladder cancer. She said "what!". At that point I realize that I know as much as her, except that I had the pleasure of going through the cystoscopy and actually seeing the tumours on the screen.

We proceeded home and onto the computer to assess what bladder cancer involved. Naturally I would not know the stage or grade or severity until after the surgery was complete, the doctor had assessed his work and pathology reported on the results. More to follow on that.

So...what does one do at this stage? Firstly, we decided that we would be very open with family and friends. This wasn't something that I/we were going to hide from. However - we did fully understand what news that we were able to convey. I think that is important, because family and friends are likely to have more questions than you have answers.

Resources You Can Count On

I started with "Dr. Google". Although many will say...don't search on google, you will find all kinds of wrongful information - I started by looking for groups where patients were in conversation. I found the Inspire Network initially that is based in the US. It was fed off the Bladder Cancer Advocacy Network in the USA. Interestingly enough, when I connect with folks on the Inspire Network - they referred me to Jack Moon in Canada. Jack is one of the Co-Founders of Bladder Cancer Canada. Bladder Cancer Canada is the national patient support network in Canada. They have rich resources, patient guide books, backed up by a medical and research advisory board, peer to peer support avails and an ongoing discussion forum where patients can engage in conversation about their own story and challenges. NOTE - I am currently the Volunteer Chair of Bladder Cancer Canada...more to come on that.

After connect with Jack and finding all of the resources at Bladder Cancer Canada, I was more versed in all that I would be facing in the next stages of my bladder cancer journey.

I was also fortunate to have a friend at work who said that a close friend of his had experienced bladder cancer. We met briefly over coffee and he re-assured me that in his mind, me catching this early, was going to prove to be beneficial and that hopefully the tumours removed would be surface of the bladder and thus non-muscle invasive and not into the wall of the bladder that could result in more serious surgical procedures and possible removal of the bladder.

Rest up For Surgery

All of this said, by the time I vacationed with my wife and son in Aruba for a week, just prior to surgery - I had a pretty good feeling of being informed about what I was facing and the various possible outcomes that might ensue.

Bladder Cancer Canada

In Canada, by connecting with Bladder Cancer Canada, their people, the resources, their guidebooks,  the fellow patients, discussion forums...you will be ready to start your bladder cancer journey and moving forward along this path with abundant resources.

@FergDevins


Bladder Cancer Awareness - After the Cystoscopy

Meeting the urologist

My first meeting with the urologist was February 5th, my cystoscopy took place on February 27th.

Debrief after Cystoscopy

After the cystoscopy you will get dressed and wait for the de-brief with your urologist (in my experience).

That first cystoscopy is truly the discovery examination. What's going on in there? Is there anything to be found? Is there anything of interest? Is there anything to be followed up on?

In my case, my debrief with the resident intern and Dr. Kodama resulted in a very straight-forward matter of fact explanation that what they had seen was in fact two cancer tumours inside the bladder. At this point, you just find out that it looks like cancer.

Its Bladder Cancer

Naturally, as so many have said before me, when you hear the words cancer you hear nothing else. Your heart races, your mind races, the worst scenarios start popping into your mind.

TURBT

Dr. Kodama then explained to me that he had seen this many times, understood that I would need to undergo an operation where the tumours would removed. He likely spoke about it being a TURBT. T U R B T stands for trans urethral resection of bladder tumour. It’s an operation to remove an early cancer in your bladder.

The doctor explained that they resect the tumour and margins around the tumour and then assess through pathology what we are facing.

Booking Surgery

He pulled out his surgical calendar and reviewed what dates were available. I interjected suggesting that perhaps I need to speak with my wife. Dr. Kodama understood that I would need to speak with my wife but suggested that it would not impact the fact that I needed to have surgery and rather than lose time let's get it in the calendar. I agreed, my only condition being that I had a trip booked to Aruba, returning on the 23rd of March. We booked surgery for the 24th. I said I'd been tanned and hung over...smiles.

The operation was booked for March 24th - next blog to follow.

My reflection only...

NOTE: I re-state that this particular experience is my experience. Others may experience or have experienced other situations, diagnosis and follow-up. I'm just recounting my particular experience and the procedures and follow up that I personally experienced.

@FergDevins

 


Cystoscopy

Bladder Cancer Awareness - The Cystoscopy

Ok you've had your initial concerns expressed by your GP, you've headed off to the urologist, the urologist might have run some more tests, maybe another scan or ultra-sound and now they think that they would like you to have a cystoscopy.

In essence this is an opportunity for your urologist to go up into the bladder with a tiny little camera and have an exploratory look around.

So...you're thinking "a camera up my what !?". Smiles...trust me, if you are on the path of assessing whether or not you have bladder cancer, you will want to just trust the guidance of your medical team and book this as quickly as possible so that they can assess your situation.

You will be asked to disrobe, likely put on a hospital gown or two (back and front). You will climb up on a table in a procedural suite of some sort where you will put your legs in stirrups. The nurse will give you a quick wash down there and then likely give you some freezing gel that will help numb the area so that the scope can then be inserted up through the urethra and into the bladder. For males you might find a slight discomfort as the cystoscope passes by the prostate gland. Try and be as calm and tension free as possible, sometimes good to take a deep breath. It may also help for you to take a tylenol before the procedure to further minimize discomfort.

The doctor may draw a small sample of urine from the bladder. The doctor performing the cystoscopy will fill your bladder up with saline to expand the bladder for best viewing opportunity. You will likely have a chance to view the inside of your bladder along with the doctor and his team. The team may include the nurse that prepped you and possible a resident student if your hospital is an educational university institution. In fact the resident may actually perform the cystoscopy and then call your urologist to take a look at the findings.

In my situation, Dr. Kodama saw two small tumours in the bladder. They almost resembled a cauliflower shape. On viewing what was in the bladder the Doctor tapped me on the shoulder and said, "I think you are likely going to need a small operative procedure (my recollection...likely  not his exact words).

The procedure might take up to ten minutes or less.

After the examination you will get dressed and then meet with your urologist for a de-brief to discuss next steps. I'll cover that de-brief in the next blog post.

@FergDevins


Urologist

Bladder Cancer Awareness Month - The Urologist

Referred to Urologist

So you've had your trials and tribulations. You've been to your general practitioner with some sort of symptom. They have decided through tests or observations that you should be referred to a urologist for a follow up on what they have found.

In my case I had been advised that a CT scan was showing something in my bladder. My doctor advised that it appeared to be very minor, but he wanted to send me to Sunnybrook Health Sciences to seek a further follow up by a specialist - urologist.

Upon Arrival

Upon arrival at Sunnybrook Health Sciences Centre, I checked in and was then seen by a "resident" who was training in urology. I explained my situation, he read the reports from my doctor and then the urologist - Dr. Ron Kodama - came in to visit me and further assess my situation.

The Plan forward

Based on the report from my doctor and the CT scan results, Dr. Kodama advised that he would like to have a cystoscopy undertaken by me so that they could go into the bladder and see what was going on. In essence the cystoscopy is a camera that goes up into the bladder to present a view from inside the bladder.

At this point I also believe that blood and urine samples were taken and my follow up appointment for cystoscopy was  booked for the following week.

Cystoscopy to be Booked

At this point there was no reference or mention of bladder cancer at all. Naturally I went home to follow up on what on earth a cystoscopy was. That's tomorrow's blog post.

I hope that you are finding this personal recount of my journey helpful.

See you tomorrow.

@FergDevins


Bladder Cancer Awareness Month - The Referral

Following up on results

You may find yourself back with your general practitioner after an ultra-sound, blood test, urine test or CT scan result with the Doctor suggesting to you that she/he would like to refer you to a urologist for follow-up.

If you are at this stage, you are in good hands. Your doctor has most likely concluded that they have seen something in your results that require follow-up by a specialist.

In my particular case, it was the result of a CT scan that showed something in my bladder. My doctor advised that it looked like it was "small" but that it would be best attended to be following up with a urologist at Sunnybrook Health Sciences Centre in Toronto.

Off to the Urologist

I was very fortunate to have been taken in under the care of Dr. Ron Kodama. After he reviewed the results from my initial CT scan, he suggested that I have a further examination that involved going up into the bladder so that he can have a look inside the bladder and see what was going on. This procedure is called a cystoscopy (more to come on that).

Advocate for Yourself

If you are at a stage where you have received results from your general practitioner and there is no further recommended action, you need to advocate for yourself. You might still have a symptom that you are feeling. Or, perhaps you have been advised to take an antibiotic to combat a possible urinary tract infection. If blood persists or other symptoms, take a stance to be referred to a urologist for further investigation and follow-up. YOU need to advocate for yourself to ensure that you have ruled out any further possibility of bladder cancer or other concerning issue internally.

Canadian Health Network and Bladder Cancer Canada

In Canada, we are so fortunate to have specialists in our institutions coast to coast to coast. Bladder Cancer is capably treated in centres across the nation.

For further support along your journey, you can also tap into the resources at Bladder Cancer Canada. In many instances we offer peer to peer patient support. These patients have "been there done that" and can help you with your decisions along your bladder cancer journey.

Wishing you well.

@FergDevins