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Stage 1, High Grade
Emzee
2 Posts
Hi everyone,

My father was just diagnosed with what the doctor is saying 'not even Stage 1 yet' bladder cancer but the tumor was high grade. I am wondering if anyone has a similar experience and can give me some information? I am worried and overwhelmed.

Best,
Emzee
12 Replies
Hello Emzee‍ 

Welcome to the site. I am sorry to hear of your father's diagnosis. Has your father been seen by an oncologist yet? Have his doctors given any indication of what treatment might be involved?

I want to introduce you to lisac‍  who was recently diagnosed with bladder cancer and JLUVRAS‍  whose father has also been diagnosed. Perhaps they can share a little bit of their experience for you.
It is not surprising you are feeling worried and overwhelmed. As the family of the diagnosed, it can be very difficult on you as well. Do you have someone in your circle you can share these feelings with so you are not feeling alone?

Lianne
lisac
7 Posts
I have bladder cancer. Wasn’t given a stage. But from what I’ve read I think it’s stage 2. Had surgery to remove it and the biopsy showed it’s in the muscle. So I did 2 1/2 months of chemo. Have another surgery in a few weeks to do a complete hysterectomy and completely remove my bladder. They are using part of my small intestines to create a stoma for the outside bag to attach to. I was told if it wasn’t in the muscle I would have just required chemo. Maybe that’s what your dad may need. Hope it goes well.
Thank you for sharing lisac‍ 

Wishing you well  with your upcoming surgery

Lianne
lisac
7 Posts
Thank you. I’m trying just to focus on it removing all the cancer from my body and not the bag. I guess like anything I’ll adjust to it in time 
Emzee
2 Posts
Thank you for your answer. I hope all goes well with the surgery! My dad is having a hard time with the idea of the bag as well. 

So far, he’s had TURBT which has helped us get the diagnosis. He needs 2 more surgeries- another TURBT and a ureter resection because the cancer crept in.

Has your doctor told you what the grade of your tumor(s) is?
lisac
7 Posts
I was stage pT2a which meant the cancer was throughout the muscle in my bladder but hadn’t spread to the lymph nodes. They removed my bladder September 30/19. I have a stoma and a bag now. My doctor is thinking my prognosis is good. 
As far as I know with stage 1 it is TURBT surgeries and possibly chemo. Once it goes to the muscle layer the bladder needs complete removal as it spreads quicker in this layer. 
Clarke
35 Posts
I got the same shocking verdict in March 2019.   TURBT proved unable to remove all the cancer, as it was too big and caused major bleeding.  I chose complete removal of the bladder, which was done in July.  A planned week in hospital turned into 69 days with other complications, including a hernia at an incision point.  Still using a cane and walker.
Getting my 6 month CT scan today.
Feeling old, disabled and discouraged..
Clarke
Hi , I was diagnosed with bladder cancer 4 years ago, was not given a stage . But was aggressive,  3 tiumors were removed, I was fortunate, they did not penetrate the bladder lining . I recieved immunotherapy.  I did not see a oncologist , but was diagnosed and treated by my urologist . Follow up appointments every 6 months . Fell free to connect , I will gladly share my experience .
lisac
7 Posts
Sorry to hear about the hernia and extended hospital stay Clarke‍  I was only in ten days and honestly it took a good six weeks at home before I felt comfortable with the bag and bag changes. I saw the nurse at the supply store almost every week for those six weeks and she was a great help in learning the bag system and what to watch for with skin breakdown also. Hope you are feeling good soon. As far as life with no bladder and a bag, I’m surprised how little I’m bothered by it. The side effects from the chemo are what has got to me. Neuropathy in my hands and feet. And severe stiffness in all my joints like I’ve never felt before!
lisac‍ - How are you doing?
Muzi
1 Posts
Hi every one , I hope every one is in high spirits and keeping well. First and foremost I would like to commend every one who is on this forum for doing an incredibly excellent job and for the ones who are battling cancer , you are the strongest of us all. Immense respect and gratitude to all of you for being strong and for sharing your journey.
my father has transitional cell carcinoma pta 2a, non muscle invasive. He has had this for the last 7 years and was going through regular cystoscopy and turbt whereby they would remove any small tumour or growth. In these 7 years he was also given intravasical chemo for 6 weeks whxih had a good prognosis’s but then the cancer did come back for which the regular cystoscopy and turbt was done. Unfortunately I am no longer with him in the same country. my father lives in Pakistan and I have recently moved to toronto. I have decided to call my parents over to toronto and live with me. But they would not be covered by Ohip and insurance does not cover cancer. I wanted this forums help in connecting with relevant personnel who can help me figure out the costs/ treatment procedure for someone who is not ohip covered. I wanted to get an idea of an estimated cost, procedure, timelines for appointment etc to plan their move here. I would really appreciate if some one can help me with this information or help me connect with some one who can.
thank you and bless all of you!!!
Sara P
1 Posts

Hello,

My dad and I are in a similar situation. So much so, that I thought maybe I had written your post and forgot 🤣. I’m a bit technologically challenged so I’m trying to figure all of this out along with trying to organize my dad’s appointments and trying to keep my own mental health in check! I don’t have any useful information for you but as crappy as it is, it’s a little bit comforting knowing we are not alone. Good luck to you and your dad.

Cheers,

Sara

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