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STARTING THE PATH TO RC
I am going to the oncologist this morning to get the results from the scan yesterday. I already know that it is muscle invasive from the TURBT I had two weeks ago. My urologist and oncologist have said I need chemo first then bladder removal. I just don’t know if I can get through this. Is there a female on this site that has her bladder removed? Maybe it’s the same procedure for males, I don’t know. Right now I am just a mass of confusion and fear, terrible, terrible fear. Scared of chemo and scared of he surgery. Can anyone give me some hope? Thank you.
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54 Replies
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LoTech,
Good the hear from you! Sounds like you are making progress. Thanks for checking in as you are an inspiration to ALL of us!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Lotech,
So glad to you are on the mend. I know it’s been a long journey for you and your family. Hoping things get better and better as time goes on. Are you in the hospital still or at some sort of rehab center? Very good to hear from you.
Peace and Love,
Dave
08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG
Lotech,
Man ,it is really really good to hear from you.
It sounds like you are finally on the mend, and that things are turning your way.
I KNEW YOU WOULD MAKE IT WORK !
Welcome back, don’t be a stranger.
Way To Go,
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
Yes! I have a pouch still got a few bugs to work out but the pouch right now has a filet and bag for healing. Soon I hope just the pouche!
Diagnosed Sept 2015 noninvasive
1st turbt Oct 3 2015, 2nd turbt Nov 13 bladder,
Completed 6 BCG initial treatments 01/11/16 02/09/16 No Cancer!
08/09/16 Cyto shows red spots on bladder, TURBT prostate scheduled
09/12/16 Cancer is back Ta prostate ,T1 high grade bladder papillary uthelial.
Cancer has invaded muscle getting RC.
Jack ,
Everything you said I’ve been dealing with ! So I’m not the only one. I’m back from another hospital stint, bacteria returned. Now I have a mainline in my neck and 24/7 antibiotic pumping thru it. I feel good of course with all the drains and lines I’m pretty much ready for Halloween. You words are encouraging thanks again !
Diagnosed Sept 2015 noninvasive
1st turbt Oct 3 2015, 2nd turbt Nov 13 bladder,
Completed 6 BCG initial treatments 01/11/16 02/09/16 No Cancer!
08/09/16 Cyto shows red spots on bladder, TURBT prostate scheduled
09/12/16 Cancer is back Ta prostate ,T1 high grade bladder papillary uthelial.
Cancer has invaded muscle getting RC.
Lotech,
Been thinking about you and your comment of not being able to walk yet. I predict that you will get past that challenge, but that it will take a bunch of effort on your part.
It has been 17 years since my accident. They told my wife that I would lose both legs and one arm. When I came to three weeks later, I learned that she would not allow amputation. Great to have her by my side.
After a month in a coma, you are as weak as a kitten. All the hard work you did before surgery puts you in a good position to regain strength, but the strength is not there for you now. You likely have started exercises of pushing a pillow with your feet, and lifting your legs as you lie in bed. Learning to walk again truly starts from square one, except they don’t let you crawl around on the carpet and drool.
First time I was transferred to a toilet from bed (bedpans deserve their own message) I was absolutely shocked to find out that I could not stand up from seated. There was nothing there. Moved back to sitting on the edge of the bed, I could not get my feet and legs in bed without help. Sucks. (Does any of this sound familiar ?)
Make sure that your physical terrorist (therapist) works you hard. Do all the exercises, no matter how silly they seem – every bit of strength added, every muscle awakened, gets you closer to walking again. Do not ignore “gait training” – it is all too easy to find a way of moving and stick with it, but there may be better ways to move that will require someone to make you do it. Learn to check out ALL the mobility muscles – as soon as you notice one that is not responding, get help before you fall in to a poor walking problem. Unused muscles become a real problem later. You can do this.
17 years and I still use a cane on the good days, but at least dogs and cats know I mean business when I encourage them to not run under my feet. There is a walker in the closet for the really bad days. Everybody adjusts, and learns to not notice, no matter how many times a cane falls over at the dinner table. Stay Vertical.
I know it is tough dealing with loss of strength, learning to eat, deal with the diversion and whatever else will pop up all at once. But that’s the way it is. Push yourself, but don’t be hard on yourself. A new normal can be a rough thing to adjust to, but it is a heck of a lot better than no normal at all.
Best to you and yours, as you all work together and get through this. You can do it. It is all uphill from here.
Excelsior,
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
LoTech,
Thanks for posting. Here is knowing things go forward and upward from here!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Lotech,
SO GOOD to hear from you.
It was my hope that things went so well that you was off to Europe celebrating. I chose to not consider any other sort of celebration.
After all you have been through, learning to walk again will be the easy part. You have already learned that skill once. This time around you don’t get to ride in the pram – other than that it is about the same.
All joking aside, I have been looking for a message for you daily.
WELCOME BACK
Super Best
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
Dude!!! I was wondering how things went. Glad your back from the other side. Did you end up getting the Indiana pouch as planned? I hope you have a complete recovery and soon.
Peace and Love,
Dave
08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG
Im still here! I had surgery on july 22, major complications hands are still shaky. I was comatose for a month so I dont remember JULY-AUGUST. I cant walk due to removing tissue that was cancerous. took out lymph nodes found cancer 2mm. the walking ability may return Im banking the nerve was just agitated. Im out of ICU and got hold of a laptop. Im still gettting small surgeries and learing to walk again.but I’m alive!!!!!!!!!!!!!!!and the cancer is at bay for now!!!!!
Diagnosed Sept 2015 noninvasive
1st turbt Oct 3 2015, 2nd turbt Nov 13 bladder,
Completed 6 BCG initial treatments 01/11/16 02/09/16 No Cancer!
08/09/16 Cyto shows red spots on bladder, TURBT prostate scheduled
09/12/16 Cancer is back Ta prostate ,T1 high grade bladder papillary uthelial.
Cancer has invaded muscle getting RC.
Lotech,
No matter how long the planning and anticipation of addressing a problem with surgery, the uneasiness and second thoughts always hit a day or so ahead.
“Maybe this will go away by itself, I try to convince my self. Or maybe there is a magic cure in (pick an exotic destination) that would be worth trying. Maybe I should cancel tomorrow’s surgery.”
Been there, thought that more than once – then it is time for the real consideration of the situation. All the reasonable non-invasive treatments have been tried; it is time to go ahead with the choice that we tried to avoid. Suddenly, it feels to good to have had, and always have, a back-up plan for the ‘just in case’.
Embrace the changes and move on with your new normal life.
Best to you and all your support team,
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
Jack
I will, just reflecting on my last days before the big change, no more urinals! Its funny you never even know about the organs in your body until they act up. I never even thought about my bladder, the last 2 years that’s all I’ve thought about. still stinging from the biopsy yesterday, and a little scared about Thursday but will see you all on the other side and tell you how it went!
Diagnosed Sept 2015 noninvasive
1st turbt Oct 3 2015, 2nd turbt Nov 13 bladder,
Completed 6 BCG initial treatments 01/11/16 02/09/16 No Cancer!
08/09/16 Cyto shows red spots on bladder, TURBT prostate scheduled
09/12/16 Cancer is back Ta prostate ,T1 high grade bladder papillary uthelial.
Cancer has invaded muscle getting RC.
Lotech,
So nice to hear good news. You gotta go with the flow, so to speak, and it is sweet when it is going your way. Hoping for an easy recovery, but you already know that it will take some time and a lot of work. Keep us in the loo-p.
Best,
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
Congrats HiTech (I like Jacks new nickname for you)! You deserved some good news.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Congratulations! You got this Brother. Finally some good news for you. Hoping everything fgoes your way in the future.
Peace and Love,
Dave
08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCGSign In to reply.
