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Stage 1, High Grade

Stage 1, High Grade

Posted by Emzee on Sep 12, 2019 9:56 pm

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

Re: Stage 1, High Grade

Posted by Lianne_adminCCS on Sep 13, 2019 3:36 pm

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

Re: Stage 1, High Grade

Posted by lisac on Sep 13, 2019 5:07 pm

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.

Re: Stage 1, High Grade

Posted by Lianne_adminCCS on Sep 13, 2019 5:51 pm

Thank you for sharing lisac‍ 

Wishing you well  with your upcoming surgery

Lianne

Re: Stage 1, High Grade

Posted by lisac on Sep 13, 2019 6:42 pm

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 

Re: Stage 1, High Grade

Posted by Emzee on Sep 14, 2019 7:57 am

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?

Re: Stage 1, High Grade

Posted by lisac on Jan 14, 2020 8:49 pm

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. 

Re: Stage 1, High Grade

Posted by Clarke on Jan 24, 2020 12:29 pm

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

Re: Stage 1, High Grade

Posted by Warriorprincess on Jan 30, 2020 1:51 pm

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 .
Compassion has no limit , kindness has no enemy

Re: Stage 1, High Grade

Posted by lisac on Jan 30, 2020 10:46 pm

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!