Freshly diagnosed!! High Grade T2 Bladder Cancer

[Ash]

What a fun way to start new year …NOT!!

I am 62 year old male, generally in good health, in Oct 2014 went to my doctor when I had experienced discomfort while peeing. After couple of round of urine tests and course of antibiotics took a month. In Nov 2014, urologist confirmed blood in urine and bladder cancer diagnosis. First treatment TURBT on Dec-22, didn’t have any problems with procedure, stayed in the hospital overnight. It was my first ever experience staying at hospital, let alone dealing with cancer and catheter tube in my penis. It was a lot to take in as an experience. I still kept believing that these tumours may not be cancerous. I went through tough post-operative 2 weeks given holiday period, got UTI spent Christmas eve in emergency getting antibiotics and catheter bag installed as I couldn’t pee anymore. Then blockage in the catheter brought us back to emergency on new year eve as well. Stayed in hospital for 3 nights getting CBI treatment and then sent home with the my buddy catheter bag…BTW we found out there are different catheter tube sizes…for men, I can tell you anything over 16F is quite uncomfortable. I asked the nurse to get a smaller one but she said there wasn’t anything else available 20F is uncomfortable and 22F is even worse.finally two days later like magic, the urine was clear, no more blood and clots…nurse came to the house and took out the catheter this time, but then start 2 day of hellish something they call “In and out” procedure where two times a day nurse comes for 2days to check if bladder is retaining urine or not…I was in the clear, no urine retention thankfully. Drank lots of fluids including horsetail tea which help bladder. Met the doctor who advised the first TURBT tissue sample didn’t result in conclusive result and he suspected muscle-invasive cancer so prescribed another TURBT to go deeper this time. I was still positive and in denial that doctor was wrong…in my happy place 🙂 but short-lived second TURBT was done Jan-26. At least this time, no post-op complications other than frequent urination, specially night time…have to get up at least 5-6 times. Finally this week doctor gave the bad news it is muscle invasive stage2 TCC and transferred my case to his colleague who does bladder removal surgeries and there will be chemo for a month prior to surgery.
Now I am absolutely freaked out, I can deal with chemo, removal of a body organ is not something I am ready to do. My wife suggested we take second opinion and researched to see if we can get appt at Princess Margaret Cancer hospital. We are now waiting to hear from our family physician who has sent over the case details to Princess Margaret. Lets see what happens….in the meantime also have appt with this other doctor next week…

[Jack Moon]

So sorry about your diagnosis. If you need any assistance obtaining the 2nd opinion at PMH, people here at BCC can assist you.
There are many very fine Urologist/Oncologists at PMH, such as Dr. Michael Jewett (world renowned), Dr. Alexandre Zlotta, and Dr. Neil Fleshner, just to name a few.
All the best going forward.
Jack
,

[Ash]

Thank you so much. Yes, we would love any help on PMH. How do I go about it?

[Jack Moon]

Just call BCC 1-866-674-8889 leave a message. Someone will contact you.
Your GP needs to be specific about the doctor you wish to see at PMH.
Anyone of the three doctors I have mentioned above are extremely well respected.
All the best,
Jack

[marysue]

Hi Ash:

You are right. This is not the way to start off a new year. Follow Jack’s advice about PMH. They are top notch. I’m from Calgary and did not have as serious a diagnosis but I can relate to the freak out part. It is tougher for someone who has never had a serious health issue before. I’ve had plenty so even though hospitals will never be on my list of favourite places at least I had some familiarity with them. Once the diagnosis is finally settled and you’ve come back down to earth somewhat, you will need to have a heart to heart about the chemo treatment and the type of diversion you may need. It will take time to adjust mentally to the diagnosis and what you are facing. Give yourself lots of time and space. Take someone with you to your appointments, take notes, ask lots of questions. Post them here on the site too. You will get lots of insight from those that have been down the road before you. Right now I’m sending you best wishes and ((((((BIGHUGS)))))).

[Greg]

Ash:
Jack’s comments above are the way to go. Jack is one of the BCC founders and knows the docs above.
I too was diagnosed with T2 four years ago and had a radical cystectomy et cetera (I am 59). I would suggest no one is ever ready to have the bladder, prostate, seminal vesicles and many lymph nodes removed as well as a new diversion constructed. But trust me, life can be excellent afterwards and when the worry of cancer is gone, life resumes quite normally for most. I also asked for a second opinion at PMH for treatment options and BCC helped put that in place. I met with Drs Zinman and Zlotta and they confirmed what my Sunnybrook docs had said. But hearing it from a world renowned hospital with world renowned specialists is somehow very helpful. As well, if they confirm the first diagnosis and treatment plan, getting them to do the surgery is the way to go. This is what they live and breathe and there are very few surprises for them.
Keep in touch. BCC can also put you in touch with someone with whom you can speak on the telephone if you desire who has been in your place and can be an encouragement and answer some of your questions.
This cancer can be beaten!
Greg

[Gord]

Hi Ash. Two years ago, at age 52, I was also diagnosed with muscle invasive BC, stage 2 as well. Had my TURBT just before Christmas 2012, had a catheter over the holidays as you did. Ugh. Wanted to encourage you to stay positive, and be your own best advocate for the care and treatment you need. The advice and help from Jack and Greg above are invaluable. Two years ago this past week, I started three months of chemo. Had my bladder removed in June 2013. Cancer free since then – 20 months now. I have a neo bladder, and life is pretty good without a real bladder. Not to say that the road from where you are now to where you will be in a few months is easy, it is not, but it is very doable. Hang in there, Ash. Like Greg said, this cancer can be beaten! I am totally willing to share my experiences and support along the way as you move through the next weeks and months. This forum is a great place, glad you found it. I will look for your next update!

[Ash]

Dear all,

Thank you so much for your support, bighugs 🙂 and advice. I now have an appointment booked with Dr. Zlotta for tomorrow afternoon.

Special thanks to Jack and Randy for help on PMH guidance.

I did see the other urologist that my doctor had referred today, his opnion is aggressive T3b cancer but says 4 months of chemo and then radical surgery in August timeframe.

I am looking forward to tomorrow’s visit. You all have helped me get renewed motivation to proceed further. I will keep you posted on my progress.

Cheers
Ash

[millize]

Dear Ash You are in a good place here. We are all surviers here.

[marysue]

Best wishes going forward Ash! (((((BIGHUGS)))))

[Author]

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