Newly Diagnosed

[M C]

Hello all,

My name is Michael and I am a 69 year old male, living in Ottawa, who was diagnosed with Bladder Cancer on May 05, 2017. I am scheduled for a TURBT on May 18. The May 05 cystoscopy showed a tumour about the size of a dime as well as a number of smaller cancers. I had a prostatectomy in June, 2016. My prostate was removed due to cancer but my PSA tests have been clear since that surgery. I attributed the occasional bleeding I have been experiencing since early February or so, to ‘ongoing healing’ from the prostatectomy but in hind site, this was an incorrect assumption. My enlarged prostate made urinating very difficult for many years and the constant pushing to urinate, caused my bladder to develop a huge diverticulum which was removed at the time of the prostatectomy. My Urologist the the Ottawa General said it was the largest bladder diverticulum he had ever seen. At present I am experiencing the ongoing emotions of fear, worry and anxiety. I will have a more complete picture after the TURBT is completed and I get the details of the pathology report. That’s about it for now.

[PeterL]

Hi Michael, sorry to hear about your recent diagnosis. I found out about my diagnosis 6 months ago so the emotions you describe are still fresh in my mind. It gets better after the initial shock. It may not be easy but try to stay positive.

There’s lots of great people on this forum that can offer encouragement, support, and advice. Praying for peace for you and that your TURBT goes well!

Peter

[Tom M]

Hi Michael.

Welcome to Bladder Cancer Canada. Sorry you have to be here but please know that there is lots of support.

Your emotions of fear, worry and anxiety are normal and understandable. Having had prostate cancer you were probably less traumatized by hearing the word “cancer” than many of us were at the outset.

Fear is a fear of the unknown and that applies to both the procedure(s) and the disease. Those of us who have been through the TURBT procedure, often a number of times, can tell you that the procedure itself is not really anything to worry about. Think of it as a cystoscopy where, instead of just looking, the doctor cuts out your tumor and scrapes the cancerous cells and then cauterizes the bleeding. You are either asleep or will have a spinal block so you won’t feel anything. It’s a bit uncomfortable afterward because you will have a catheter for a while while your bladder is flushed to get rid of residual bleeding any any clots that may form. Urination can also be a bit uncomfortable for a while but you have been there before.

The biggest unknown and fear we all experience is the pathology report. When your surgeon sends samples of the tumor and bladder tissue to the pathologist, a wait of up to a couple of weeks before receiving the report is common. Because your course of treatment from this point onward depends on the grading and staging of your cancer cells, we tend to mentally torture ourselves during that 10 day wait – always assuming the worst. I have 2 pieces of advice for you about the pathology report: first, make sure your family doctor gets a copy of the report and secondly, try your best to put it out of your mind for a couple of weeks. Worrying about it isn’t going to change a thing and if you can honestly say to yourself “whatever is, is” and deal with it at the proper time, you’ll make things much easier for yourself.

When I was first diagnosed with bladder cancer 6 years ago, my family doctor told me that, while no one wants to have cancer, bladder cancer is about the best kind you can have. In my case the road was quite long and I can tell you about various treatments but the good news is that I am still here and living a normal like.

I wish you well with your TURBT next week and sincerely hope that the results will be encouraging for your ongoing treatments but, whatever the case, know that you have support from many of us who have ‘been there’. Don’t hesitate to call the Bladder Cancer Canada toll free number if you would like to speak with a volunteer.

Best of luck. Please keep in touch – especially when you get results and look at a course of treatment.

With support,

Tom

[bluebill]

Hi Michael,

Welcome to the Bladder Cancer Forum.  I am a 67 year old male with Bladder Cancer and live in Kanata. I was first diagnosed 2 1/2 years ago with T1HG.  I started with large amounts of blood in my urine after that I had an ultrasound and that showed a 2.5 mm tumor.

This was followed by a TURBT which the pathology report confirmed that I had NMIBC and the classification was T1HG. Please make sure you request a copy of the pathology report at your next appointment.  Most Urologist will give it out without any questions.  The next TURBT was about 8 weeks later which I consider as the most important one as the Urologist scraps the bladder wall and removes as much of any remain tumor and takes another sample for cytology. After that a protocol will be set out for your treatment based on your diagnosis.  

When I was first diagnosed fear was definitely one of the emotions I had. Once the diagnosis was made the fear was much less and life started to get back to normal.  I went through BCG treatments for 2 years with a cysto every 3 months followed by BCG treatments for once a week for 3 weeks the initial treatment was once a week for 6 weeks. We all react differently to treatments but I know other cancer treatments are far more side effects than BCG have.  
I suggest you keep your loved ones and friends very close as my wife was a great help in getting us through all of this.

I also believe now if you are going to get cancer Bladder cancer is one of the best you can have.  I now have appointments every 6 months a cysto on May 24th followed by 3 weeks of BCG. So life is good I still have fear of a reoccurrence but you will find the fear, worry and anxiety  slowly decreases as time goes on.  

You will find a great deal of information on this forum which will be very helpful.  I wish you all the best in your start of your Bladder Cancer  journey. If I can help in any way please send me a message.

Cheers
Bluebill
T1HG

[M C]

Thanks PeterL, Tom M and bluebill for your kind words of encouragement and support. It helps me deal with the BC issues I am facing knowing that you all have similar issues and are going through or have gone through a situation very similar. The pathology report which I expect to receive a few weeks after my TURBT is worrisome as my mind imagines a bad outcome. I know I have to control my thoughts and try to stay positive. I have work to do in this area and I believe it will get better with time. Thanks again for you very kind words of support. I will post an update when I have more information.
One final thought; I am so fortunate to have a great, supportive wife who is with me every step of the way along this difficult journey. We will be celebrating our 35 wedding anniversary on May 22.

Cheers
M C

[M C]

I had my TURBT on May 18 and it went well. I am still having some burning on urination but that is diminishing as time passes. My next step is the appointment with my Urologist and the pathology report. I have been spending some time thinking about my bladder cancer and how it may have ‘potentially’ started. Not sure if anyone else has brought this topic up on this forum but I think it should be introduced now, in any case. For about four or five years I have been in the habit of using my laptop computer while reclining in an easy chair or sitting with my legs extended on a sofa. When in this position my laptop was always positioned almost directly above my bladder, sometimes for 3-4 hours each day. This area of my skin would get warmed by the laptop especially when I would be using it while re-charging the onboard lithium battery. Unknowingly, I may have been directing electro-magnetic radiation directly into my bladder and kidney area and may have possibly, caused my own bladder cancer. I have done a bit of research in this area and discovered the internet is awash with the dangers of EMR’s. Of course, I can’t prove my suspicions but It is something that I think deserves to be mentioned here. Needless to say, I keep my laptop at arms length away from me, while using it now.

[brett]

MC, fascinating post ! and here i sit with a laptop in my— yes lap, anyhow I’m waiting for lab results from a second TURBT also the first one labeled me as having aT1 G3 hope i got that right, anyhow its been 2 months since the rollercoaster ride began. I figure its all part of the package for me, as i smoked 45 years, spent 38 years in a coal mine as a heavy duty mechanic. They say hair dressers are in danger of this same diagnosis, and i say so is anyone working in proximity of welders using dye and contrast aerosols to find cracks.
Well, on with the ride, may some good come of it.
brett

[M C]

Just a brief update on my situation: My second TURBT was completed on June 13, exactly 26 days after the first TURBT. The report from my urologist was good news as my BC is NMIBC at this time and six BCG treatments are scheduled. The bad news is the Urology department at the Ottawa Hospital shuts down for holidays between July 23 and August 07. It seems like they did not want to start my BCG treatments before their holidays as that would interrupt my treatment cycle ……..so I am not scheduled for my first BCG until August 08th when the medical staff all return from holidays. This is eight weeks after my second TURBT and well outside of the Canadian Urological Association guidelines of commencement of BCG within two to four weeks of the second TURBT. I asked my urolo admin assistant if it would be possible to start the BCG treatments at any other location in Ontario as I am flexible and can travel but she said it would mean starting all over again with a new urologist at the new location so……that doesn’t really work. I understand the need for medical staff to have holidays but unfortunately my BC doesn’t take a holiday and this four to six week delay in starting BCG treatments could compromise my cancer outcome. I’m just expressing frustration with the medical system and realize that ultimately, there is really not much I can do about it.

[bluebill]

Hi MC,

Glad to hear your 2nd TURBT went well. The eight weeks until your BCG is something I think you should discuss directly with your Urologist. My first BCG was just about six weeks after my 2nd TURBT and was due to my slow bladder recovery.

Bluebill
T1HG

[cheryl9]

Hello M C
I understand your frustration. Guidelines are just that: guidelines. After each of my TURBTs we didn’t get the pathology report for 4-6 weeks. Then it was another couple weeks before BCG treatments were scheduled. After three TURBTs, two fulgurations and 30 BCG treatments, I am two years cancer free.

In case no one filled you in, the is your first round of BCG out of a usual 3 year protocol of treatments. DON’T PANIC!!! It just isn’t worth it.

A new favorite quote of mine: I have lived many years with many troubles and most of them did not materialize.

My best, best advice: quit swinging from the rafters. All you will get is slivers in your fingers and many bumps on your head.

Take care
Cheryl

[marysue]

Hi MC:

One thing to keep in mind is that the TURBT surgeries remove all, if not most of the cancer, not just a sample for biopsy, and that at the very least if not a complete cure, slows it down and buys you time. Two back to back TURBTS often do a really good job of helping increase the odds of success.

I had to wait 6 weeks after my first TURBT in 2008 and 8 weeks after my second TURBT in 2010 before starting BCG treatments. I had to wait the 8 weeks for an opening in the clinic. It was really full at that time. I did a set of 6 (once a week for 6 weeks in 2008) and 15 treatments in 2010 ( a second set of 6 followed by 3 sets of 3 – once a week for three weeks at 3,6 and 12 months from the date of the first 6). I have been cancer free for nearly 8 years.

It is my understanding (someone can correct me if I’m wrong) that a week or two variance of starting doesn’t have a high risk of skewing any successful outcomes. The purpose of the BCG is to stimulate your immune system to that it will attack any further cancer development and help prevent it from coming back and once treatment is started it is important to try to complete as many of the recommended treatments as possible. Some people do need to miss a treatment for medical reasons. Other stop due to side effects or other medical needs. Still others will resume treatments after a break. Your urologist and clinic staff will be the best to advise you as you go through the treatments.

Try to deep breathe and take it slow. This is scary, I know but it is doable. I remember how I felt when I was where you are now and can honestly look back and feel proud of the battle that I persevered with and won. Best of luck going forward and let us know how it goes. (((((HUGS)))))

[M C]

Thanks for your kind words of encouragement, Mary Sue. I know I am panicking a bit at the delay in treatment and I have to work hard at ‘relaxing’. It is in my nature to overreact when things don’t go as planned.

I will post a follow-up once I start BCG treatments.

[Jack Moon]

Hi MC

I have had 3 sets of weekly BCG treatments and also 12 maintenance treatments. The earliest I began BCG treatments after a Turbt was 6 weeks. My Uro insisted on min of 6 weeks to insure the bladder had healed. Also throughout my BCG treatments I had several bladder infections, I believe 9 in total and my treatment protocol was interrupted each time by a minimum of 1 week and I believe twice by 2 weeks. I was diagnosed in 2005, had 2 small low grade recurrences and have been all clear since 2007. Hopefully the short delay in your treatments will not affect the outcome.
I wish you all the best with the treatments, and hope they keep the bladder cancer away.
Best to you,
Jack

[M C]

The last of six BCG treatments was completed today and must say they were essentially uneventful. No burning or discomfort other than the usual uncomfortableness of the catheter insertions during each treatment. Also, no blood has been noticed in my urine. My cystoscopy is scheduled for October 20 so I am hoping for good results at that time. I will post a follow-up after that procedure is completed. Best wishes to all.

[Rick B]

Good to hear you tolerated the BCG instillation well and best wishes for an all clear on Oct 27th. I have gone through what you’re experiencing and after 3 TURBT’s and 20 BCG treatments over a period of 15 months I am pleased to say that i’ve been cancer free for over 4 yrs.

Stay strong and above all stay positive…god bless!

Rick

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