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Results are in - on to bladder removal!

Results are in - on to bladder removal!

Posted by Truckerswife on Mar 5, 2018 6:14 pm

After the initial 6 BCG treatments with bladder cancer, hubby had his restaging done a week ago. We just got results telling us it has now grown into the muscle, therefore he will be referred to a surgeon for a cystectomy. I know we will have discussions with the professionals before this happens but am curious to know if Anyone has had this done and what route did you choose? How did you make the decision?

Re: Results are in - on to bladder removal!

Posted by Bubbiewarrior on Mar 5, 2018 7:58 pm

Hi my name is Pam and I also have bladder cancer that went into my muscle. I have had 8 rounds of chemotherapy and 33 radiation treatments and another 6 treatments of chemotherapy . I am trying for bladder preservation. This Wednesday going to princess Margaret for a cystoscope hopefully all will be good. One day at a time each day is a gift. Good luck. 
Warm regards
Pam (Bubbiewarrior)

Re: Results are in - on to bladder removal!

Posted by Lacey_adminCCS on Mar 6, 2018 10:47 am

Hi Truckerswife‍ 

Thanks for the update, sorry to hear that the tumour has grown into the muscle. 

You may want to connect with Annamarie444‍, livingwithbladdercancer‍, gordr‍. We also have a bladder cancer thread here.

How are you holding up?

Lacey

Re: Results are in - on to bladder removal!

Posted by livingwithbladdercancer on Mar 7, 2018 1:49 pm

Hi Truckerswife
My bladder cancer had also gone through to the muscle and surrounding tissue. I had the radical prostatectomy done to remove the bladder/prostate/part of some lymph nodes and a bit of surrounding tissue. I ended up with the Ileal conduit and while it hasn't been trouble free, I do believe from a practical point of view, it is the least troublesome option.
I had initially chosen the neobladder, but it wasn't technically possible. In hindsight, I am glad it worked out this way. I had the operation done in March 2015 and have had a relatively easy time of it since. There are changes to lifestyle and such naturally, but adapting to the new life has been fine. I have chronicled my personal journey from diagnosis, through surgery and life after surgery at https://livingwithbladdercancer.com, and maintain that blog to offer help and support to others with bladder cancer. Feel free to read my experiences and hopefully that will help with some of the questions you and your husband will most definitely have going forward. You can reach out to me anytime as well. Best possible wishes to you both.
Steve (livingwithbladdercancer)
 

Re: Results are in - on to bladder removal!

Posted by Truckerswife on Mar 7, 2018 7:29 pm

Sorry Steve. I sent you a message before I read your reply to me. I will go read your blog. Thanks for any support & encouragement. Wishing you all the best in your journey.

Re: Results are in - on to bladder removal!

Posted by Truckerswife on Mar 7, 2018 7:35 pm

Thanks for your reply Bubblewarrior. At this time I think we are too scared to even think about trying bladder sparing. We definitely would like that route if there was a guarantee but realize there is no such a thing, even with RC. We are afraid of metasis while trying bladder preservation. Maybe we just don't have enough information? I'm praying you will win this battle, with bladder intact!! 

Re: Results are in - on to bladder removal!

Posted by Truckerswife on Mar 7, 2018 8:09 pm

Thanks Lacey. To tell you the truth I think I'm more afraid than my husband!! Plus I ended up with bronchitis & a touch of pneumonia so haven't had a very positive outlook this past week. However, I'm feeling a lot better now. We are waiting to hear from the specialist in Edmonton for an appointment to sit down and discuss options with him. Waiting is always difficult! My husband has an attitude of "this is just another hurdle to conquer and I'm sure we'll have more hurdles as time goes on. We'll deal with things as they come up!" He is feeling physically extremely tired tho and would like to just get on with this! Cancer is quite the beast to deal with!!

Re: Results are in - on to bladder removal!

Posted by Warriorprincess on Mar 11, 2018 9:07 am

Truckerswife‍ , I am so sorry that removal is the next step for your hubby. But it sure sounds like he has a great attitude!  And you are definitely doing a very good job suppoting him.  Try to keep strong. Please let me know how the surgery goes .
​Thinking of you
Liz
Compassion has no limit , kindness has no enemy

Re: Results are in - on to bladder removal!

Posted by Warriorprincess on Mar 11, 2018 9:10 am

Bubbiewarrior‍ , had to edit my post, had my dates mixed up ! Hope all went well with your cystscopre .
Thinking of you 
Liz
Compassion has no limit , kindness has no enemy

Re: Results are in - on to bladder removal!

Posted by Bubbiewarrior on Mar 11, 2018 11:52 am

Hi, had my cystoscope last Wednesday at Princess Margaret and cystoscope was normal. I will have another  one in 3 months. Doctor said to go home and have some champagne.  March 22 having a CT scan and seeing my oncologist March 26th. Starting to see some light during my journey. One day at a time each day is a beautiful gift.
Big hugs Pam

Re: Results are in - on to bladder removal!

Posted by Truckerswife on Apr 30, 2018 7:00 pm

Hubby had a radical cystectomy, prostectomy, and lymph node removal on April 19th. His recovery went very well, a few minor set backs and was discharged 9 days post surgery. We stayed in the city for a couple of days to make sure we'd be ok plus he had a pet scan this morning. We will make our 7 hour drive home tomorrow. 

Re: Results are in - on to bladder removal!

Posted by livingwithbladdercancer on May 1, 2018 10:05 am

Hi Truckerswife‍ 
I am happy to hear it went well. That is very good news. There will be a bit of adjustment with the IC, but with a little time, it will just become a part of the routine. Movement is king. As much walking as possible, especially in the initial weeks helps the body heal and adjust to the new way of things working.
The bowel is now shorter and there is some scar tissue, so anything that helps keep them working and healing is huge. Bowel movements will be as normal as they were before, but the body will need a little help initially to recover to that point.
As for the bag choice, there are several styles. It is worth experimenting with different styles to find the one that works best for his own comfort and lifestyle.I use a two piece as I find that overall, that works best for me. Initially, he may need to change the bag every few days, that will improve.I am getting 5-7 days between changes now.
​There may be urine burn on the skin and sensitivity as his skin adapts. That will pass and the skin will become tougher around the stoma and the area where the bag adheres to the skin. I use an adhesive remover to clear the skin of glue when changing and then prep the skin with a no-sting skin prep. This seems to help considerably in protecting the skin and making the bag changes less uncomfortable.
Please feel free to reach out if you need :-)