Thanks for your reply. There are so many options and unfortunately, I really don't understand all of them ... yet. Hopefully, my doctor will get it right the first time. <smile> There is so much to learn about all these procedure. I will let you know the results and we will hope that it is the right answer. Good luck on success with your latest procedure. I hope that it is the best result too. Keep us posted.
Sorry but I had to remove your personal contact information from the post
both for your personal privacy and for liability concerns for the American Bladder Cancer Society. We cannot allow personal information to be posted for public scrutiny per advice from our legal consultants.
Hope that the reconstruction/remediation process works well for you!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
3 years 9 months ago - 3 years 9 months ago#52076by camillewhaley
Hi, and congratulations! I had my one year all clear in June after stage 3 bladder cancer. Our situations are different. I have already had a neobladder made from my intestine. I had the option of an ideal conduit (mitrofanoff procedure) with stoma and urostomy bag but I chose the neo bladder as I am young ((50 at dx) and fit and active and healthy - no cause for my cancer. I have just had a thirdcrepair with one of the best female pelvic repair and uro/gyn surgeons in the country. I am 4 weeks post op and we are praying that it will be a succes. It's a lot to type about. 4 I've had two Martius flap surgeries using the labias (fat vascular pads); I also have a sling placed made from fascia due to stress urinary incontinence related to the neobladder (the new bladder made from my intestine). Should this not be successful I will likely have to convert to an ileal conduit (via mitrofanoff) with urostomy bag/stoma or the Indiana pouch which is an internal stoma that is catheterized every few hours to void/empty. It's a lot to explain to you. Our situations are quite different but I can speak to the fistula quite directly as I've been affected by it since June 2015. Congrats and so happy you're without cancer after stage 4. That's incredible!
Last edit: 3 years 9 months ago by sara.anne.
The following user(s) said Thank You: Henriz, dani
I just received a wonderful "cancer-free" diagnosis on August 15. My vaginal cancer and all other associated cancers resulting in my Stage IV cancer diagnosis are gone. I am so thankful and so blessed.
I still have the bladder fistula. I have found a doctor in Longview, Texas and specializes in bladder reconstruction and he is very confident that he can repair the bladder fistula satisfactorily along with reconstruction of the kidney ureters to improve the function of my kidneys. Of course, there are several options and he won't know which way he will have to go until he gets in the OR.
There will be a bladder Flap Repair, ureter reconstruction, and/or Mitrofanoff Procedure with an abdomimal stoma. This is the least preferred, but may be the way it is. I will just have to trust his judgment. I do hope that it will be successful and not have a failure as you have had. I understand there is also that chance.
I will post the results later. Wish me luck and send prayers my way.
4 years 1 month ago - 4 years 1 month ago#51365by Henriz
I am so sorry to hear of your fistula problem and I do completely understand what you are going through.
I have vaginal cancer in the cuff of the vagina...actually right at the area where the bladder fistula is located. The cancer has decreased about 75% since I started chemo, so that's the good thing. Since the shrinkage, the cancer has been "stabilized" since January, 2016, so I feel very fortunate. I am now only on one chemo drug, Avastin. A fistula is one of the side effecs of Avastin, along with high blood pressure (which I am also trying to stabilize), but apparently it is considered almost a miracle drug and is used a lot in maintenance. So, I am now using it through IV every three weeks for at least three more treatments. Then we will consider taking a 6 week break and see how that works. Since there is no cure for vaginal cancer, it appear that unless God decides to cure me, I am stuck with this routine.
I have been told here is no way to repair the fistula because of the location of the cancer, that it just won't hold. So, I am stuck with the Depends and pads 24/7 also. I have gotten a system worked out using Depends/Overnight Poise/and another Poise that works for at least two hours, so I can work my schedule around that. It's not pleasant, but I am alive and able to enjoy life. I have resigned myself to this situaton, so until I am miraculously cured, it is the life I have. I am still praying for he miracle and believe that it can happen.
I have not tried any catheters because the oncologist doesn't think they will work because of the location of my fistua.
I am located in Granbury Texas. My main oncologist is at M.D.Anderson in Houston. I have another oncologist at Texas Oncology in Ft. Worth where I have my chemo treatments. I feel I have great doctors, so I will continue to listen to them.
Stay in tough. At least we can commiserate together. This is not something that you can talk to people about. I am totally embarrassed having to buy supplies. <smile>
I hope you do find a solution and will be interesting in hearing about it.
Hi, I searched the site for "fistula" and found your entry.
I currently have a vasico-vaginal neobladder-vagina fistula.
I've attempted to repair it twice post RC 6/15 in 9/15 and 4/16, once with a labial flap placed and the second with a rectus ab fascia piece placed. Neither was successful and one of best surgeons in the country for repair and women pelvic ur-gyn was the MD.
I've been completely incontinent for over a year. I do have an indwelling foley and Suprapubic catheters and urine bags that help alllow me to get out of the house! I wear Adult Depends with pads 24/7. I'm 51 and very active, so it's been a bit challenging...Anyway---
Not trying a third time. Going to have to convert to a different diversion, an IC, or a form of catheterisable internal pouch (Indiana prob not, but another version-surgical procedure of that pouch,
I am wondering how are doing? Where you are located etc? Did you get things worked out and are doing well?