[Summerton]

Hi Darknight,

I am a 4 year cancer survivor, and when I was first diagnosed, I had many cystos and Turbts. I personally did not had any serious discomfort with any of them. They were all done with the numbing gel, and a flexible camera. My brother, on the other hand, experienced  a similar one to yours. He is quite “up tight” with anything to do with needles, and as a result of his first Cysto, he suffered a panic attack and he had to be restrained for the procedure. I suggested that he confer with his GP about getting a script for Ativan, and taking it prior to the procedure. In addition, I suggested that he speak with the urologist about using a numbing gel as opposed to a needle . He did this, and his subsequent Cystos were somewhat more tolerable.

Dave Summerton

[Summerton]

As a survivor and PSV, I look forward to using this revamped forums site.

Congratulations Jack!

Dave Summerton

Dave Summerton

[Summerton]

Hi William,

I had my RC in October of 2014, and opted for the Indiana Pouch. My decision was based primarily on the fact that my brother in law had an IP for 20 years, with almost no issues at all.To date, I have had no infections and am very pleased with my decision. I am able to use my Hot Tub, my daughter’s swimming pool, and the Ocean. I have been to Europe, the Amazon jungle, Vietnam, Cambodia, and Newfoundland since my surgery, and have another 24 day trip planned for the end of March. I wear a small bandage between emptying with a catheter every 4 to 5 hours. Like SJay, I to would be happy to give your more information by phone through the BCC Personal Support Volunteer program if you wish.
Best of luck on your upcoming surgery, and no matter what you decide you will do just fine.

Regards,
Dave

Dave Summerton

[Summerton]

Hi Mad,
Sorry to hear about your dilemma. I have an Indiana Pouch as a result of radical cystectomy surgery in October 2014. The reason I opted to go this way was my personal relationship with a family member who had an IP for 20 years, and had very little problems with it. There seems to be a lot of discussion about the Indiana Pouch surgery, and the seemingly low number of such surgeries. Some of the main reasons for this are; the extended duration of the surgery , the physical condition of the patient, possible physical limitations inside the patient e.g: scar tissue/prior surgeries etc. In addition, not all surgeons perform this surgery, whereas virtually all urologists do perform Ileal Conduits. There is no guarantee that this option can be performed until the surgeon opens up the patient and makes a decision as to viability.
I am very happy with my decision to go this route, and have very little complications.
I would strongly suggest that you contact BCC and ask to be put in touch with someone who has had this surgery.

Dave Summerton

[Summerton]

Hi Sue
I had my RC/RP October 31 2014. In my case, I have an Indiana Pouch, and it too is made from bowel and as such, produces a certain amount of mucous. I was told that the amount would reduce over time, but that does not appear to be the case. It doesn’t create any real problem as such, and I believe that it is just one of those things I have to live with. As a point of interest though, every now and then, the pouch seems to go through a “self-cleaning ” mode and a large amount of mucous discharges through the catheter without any disruption to the normal operation of the pouch.I would agree with Stephen on the possible effect of reducing mucous affecting the bowels.

Dave

Dave Summerton

[Summerton]

Hi Dave, welcome to the forum as a participant, rather than a lerker, (just kidding). I’m glad you joined as this is the place to learn all there is to know about bladder cancer. I just joined a few months ago and I’m so glad I did. I was such a green horn I didn’t even know enough about it to ask an intelligent question of my doctor and there really wasn’t a lot of info coming from him. I had never even heard about it, so I was in total shock when told I had it. This came on the heels of colon cancer and lung cancer previously diagnosed almost 5 years ago. I figured this bladder cancer was related to those two cancers, but later found out that wasn’t the case. I’ve been dealing with bladder cancer now for almost a year and a half and I’ve had so many surgeries, I’ve lost count. I had a tumor removed from the tube going from the bladder to the kidney, (along with a good chunk of that tube) and as far as I know at this point, there are no tumors visible from the last cystoscopy I had a few weeks ago. I will have another surgery later this year, or early in the New Year and of course, scans, etc. until then. I’m told this is a very aggressive form of bladder cancer, so I expect I have a long road ahead and likely bladder removal in the end.

I wish you well with your up-coming surgery, but keep us posted on how you get along with it. Again welcome to the forum where people on here are very helpful with providing info or giving directions on where to find answers.

Lorraine

Thanks for your good wishes. I have had, and still do, a very positive attitude throughout this entire journey ,and feel that this is very important for those of us who are on the same journey. I will keep you posted on my results, and also wish you the very best in the coming months.
Dave

Dave Summerton

[Summerton]

Hi Greg50
Like you,I too have been monitoring the BCC website since my initial diagnosis of bladder cancer over 15 months ago. Initially, I had NMIBC, albeit very aggressive high grade tumors. I opted for the BCG treatment, and after the initial 6 week treatment, I was given the all clear from pathology. Two subsequent cystoscopy checks also resulted in clear results. However, on my most recent turbp, the pathology was not so great. The diagnosis is cancer in the bladder, bladder cancer in the prostate and urethra. I am scheduled for RC, prostate and urethral removal at the end of the month, and hopefully a successful Indiana Pouch procedure.
I have spoken to a regular BCC member who underwent the same procedure in 2011, with the same surgeon, and I am greatly reassured. As a matter of fact, it was this surgeon who suggested I contact this person.
I think my situation proves that we can never let our guard down when confronted with bladder cancer.

DaveS

Dave Summerton

[Author]

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