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[Vaughn]

Hi.

Just a little about myself although I don’t usually freely talk about me. On the day of my 60th birthday this last May I experienced gross hematuria. Never had it before. After tests were done had a TURP and a TURBT. Pathology showed no muscle invasion. Standard second TURBT pathology contradicted first and showed there is muscle invasion, reason they do it. As a result I started pre surgery chemo treatments on October 14, 4 cycles of three weeks, and am then scheduled for a radical cystectomy on January 15, 2015. It all moves so fast. I am somewhat unusual I am told because I have never smoked and unlike most who have numerous TURBTs before it arrives in the muscle, mine jumped right into it.

I have a decision to make. The choice between a neo-bladder or a ostomy. I would appreciate input that may be relative to my choice.

I hope this entry is appropriate.

Thank you. Vaughn

[cheryl9]

Hello Vaughn

As others will say: welcome to the site that nobody wants to belong to. As you will find, it was a very good step for you to make contact. You will find lots of help on this site.

I have non-invasive so cannot provide advise on the options. Until others that have been down the road you are going down respond, take a look through some of the other topics. Your question comes up regularly and there have been lots of good info and resources posted on this forum. Good enough that I have gone through the exercise myself and made my choice should I ever have to do it for real. Made the choice now while I am more level headed and thinking clearer.

I can relate to that whole process of diagnosis and shock that you are going through. Everyone with BC can relate. Review the info under the “Facing Bladder Cancer” tab at the top of the web page for some really good info. Try not to spend too much time researching other sites. They will scare the pants off you. This site is way more realistic.

Then take a deep breath, two or three or however many it takes, hug those you love, spend time with those that you are close to and find a way to laugh again. The stress of BC is way too hard on a person to keep it bottled up inside of you. It could shorten your life.

Appreciate every single day that you have because it could always be worse. I know, cliche but real.

While it really sucks that your journey began on your birthday, at least it began. Better than those little cancer buggers continuing to have free reign in your bladder. The gross hematuria on your birthday was a birthday present that could end up saving your life. Not bad if you ask me.

Take care

[DDep]

Hello Vaughn

Consider this site as as a source of support.

I am 59 and, like you, never smoked. For for the last 30 odd years I worked in an office. Although I believe I may have had bladder cancer symptoms, I had my first bout of gross hematuria the day after my annual physical check-up.
On my 59th birthday, I had my cystoscopy – and low and behold – a large 4.5×3 cm tumor.

I also had two TUR(BT)s because, my Urologist was convinced, by visual experience during the first TURBT, that I probably had invasive BC i.e. either T1 or maybe T2. He mentioned at the time to my wife that we would have to wait for Pathology. He added that owing to the fact that I was “young” I would be a good candidate for a Neobladder. BTW, in recovery, the resident young urologist who watched the procedure and then visited me was also preparing me for an invasive result.

In the end, after 2 TURBTs the pathology confirmed a non-invasive tumor. As such, I am not in the best position, from a first person point of view, to offer advice on your choice of urinary diversion. The only thing I can say is that my Urologist felt that I, at 59, was a good “young” candidate for a Neo-Bladder.

Please “Seach” this site as you question comes up many times.

I wish you all the best in your decision and … May God Bless

DDep

[marysue]

Hi Vaughn:

I too, have not had invasive bladder cancer but you should hear from individuals at some point. You can also call the Toronto office at 1-866-674-8889 and leave a message to be matched up with someone that has had a neobladder. Toronto has a list of patient volunteers that are willing to speak to individuals and they do their best to match by gender, age and diagnosis. Take care and let us know how it goes. (((((HUGS)))))

[Vaughn]

Thanks all for your info.

[millize]

Dear Vaughn There is lots going on for you right now and in the future. Marysue has given a awsome tool for you to use PLEASE DO.Every journey here is different and yet the same.This site continues to evolve, as well as Bladder Cancer Canada.I’am glad you have found us, this is a very uncertain time in your life.We are all here to help as best we can.I don’t have a neo, but l do have an ileal conduit, and I’m still here 2 1/2 years post-op.I do most of the things l did before, with some changes as this can’t be avoided. We are blessed to live a country where CANCER CAN BE BEATEN.Reach for faith, believe in hope, and know you are loved. Oh ya celebrate often

[Gord]

Hi Vaughn, just was reading some posts here on the BCC site and saw yours. Don’t think I have written to you as I have not been on the site in a while. I was aged 52 when diagnosed. I also went straight to muscle invasive BC. Also never smoked and never worked with chemicals. Diagnosed over Christmas in 2012/2013, I did three rounds of chemo – four weeks each, before having my bladder removed in June 2013. Bladder gone, cancer gone! I have my 2.5 year bloodwork and CT scan next week, and am expecting and hoping to still be cancer free. Because of my age and the fact I had no other complicating factors, I went with the neo bladder. While the surgery for a neo is a little longer and can take a longer recovery time, I was told my recovery was pretty much text book, with few complications. It is quite a journey, as hard as everyone told me it would be. I experienced a lot of fatigue during chemo, but otherwise handled it well. I even worked part time thru chemo, went off work a couple of weeks before surgery. Was on sick leave for three months post surgery before returning to work part time, to work my way back to full time. Now 2.5 years later, I have to say I am really pleased with my result. My neo works as it should. The early days were filled with learning how to void using my muscles. If you go this route I would seriously recommend a visit to a physio that specializes in pelvic health. Just knowing my muscles worked well gave me confidence I could learn to use them to void. Lots of wetness and a few accidents in the early days, but I am lucky in that I pretty quickly gained full continence, both day and night. This is not everyone’s experience but it was and is still mine. In fact my problem tends to be retention, meaning that I occasionally have to self catheterize. While the thought of it made me very nervous, the actual act is really no problem once you get the knack, and get over the psychological hurdle. And fear of self cathing should not be the determining factor in whether you go for a neo or some other resolution. My life and health are completely back to normal. I enjoy not having a stoma, though I am sure I would have gotten used to it, as others have. I enjoy the advantage of the neo in that the only difference is that I void differently than before. I would be glad to answer any questions you might have. So glad you found this site that no one wants to join. I am glad I did as it and the people on it have been a great source of info and advise through my journey. Looking forward to future posts and following your progress.
Gord

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