New to the BCC forum

[charg1@sympatico.ca]

Hi to all,
I have just been diagnosed with bladder cancer (invasive muscle) and have been advised that I will have to undergo an RC. I am meeting with my surgeon/urologist at the Ottawa Hospital tomorrow to discuss the 3 options.

My frustration is that there is not a lot of information and/or statistics on which urinary diversion option works better for women.

I am leaning toward an Indiana pouch or a neo-bladder but I would like to know if anyone can tell me their experience with either of these options. I know that things can change in the operating room but at this point I am a good candidate for any of the options – mid-fifties, active, and was very healthy up until now.

As far as wait times – this scares me the most – I started showing symptoms in mid November, diagnosed after a TURBT in February (after waiting so long for test results) and finally getting to see a specialist in early March. I too go through my GP to get results faster and learned quickly to go on “cancellation” lists for tests and scans. My worry is that the cancer will have time to spread while I’m waiting? I’m thinking yes and then I get frustrated!

Anyway having said all that – if anyone (women preferably) would like to share what option they chose, why and how it has worked out.

Thank you,
Charlene

[ADaughtersLove]

Hi I unfortunately have no info on Women’s options and still 80% of the time feel uneducated and at a loss finding info for my Dad. However I know how helpful this site has been for me. My Dad had to decide between the two options. With is age (64) and his concerns around incontinence he chose the external. Everyone is different and I have no idea about options for women. The specialist said it was a personal option and needed to be thought over. So our DR set up a meeting with two Volunteers and we met and spoke to a person with a external and a person with a neobladder. My dad was able to ask his questions and since my father had reoccurring issues with catheters, previous issues with sleeping and his incontinence concerns he opted for the external. I’ve read on here people who have had both, both positive experience and both negative experiences. If you don’t get a response from a female member soon try re posting with a more direct title asking the question and I know someone will get back to you! 😉 Good luck!

[Az]

Hi. I’m not too sure what the rest of your story is. I’m new here but I just wanted to say that I think it was great that the doctor found two volunteers for your dad to speak with who are living with his options. Making big decisions is never easy, but that must’ve helped.

[Susan]

I had a cystectomy in October 2011, and opted for the ileal conduit surgery where I wear an external pouch. I was age 66 at the time of surgery. My only previous surgeries were the 3 TURBT’s I had been having for recurrences of bladder tumours over the previous 4 years.

I was in hospital for 7 days after the surgery, and then recuperated for another couple of weeks at my daughter’s house. I had little trouble adjusting to the external pouch situation, although at the time I remember being incredibly nervous with every pouch change, and finding it hard to imagine being at ease with the whole thing. Now, however, 3 ½ years post surgery, dealing with the whole thing has become simply another routine, almost as simple and routine as brushing my teeth.

This was a very significant surgery, and my biggest surprise was how long it took me to recover stamina. The fatigue was a big factor for several months after the surgery. I was very grateful for the opportunity to visit with the enterostomy nurses at my local hospital. They were an invaluable help in learning how to manage my “new normal”.

I wear the same clothes as before – the pouch is not visible under clothing. Since my surgery, I have travelled extensively in Europe, lolled around in hot tubs, swum in oceans and pools, and gone rough camping where the only bathroom was an outhouse. All very manageable.

This Canadian forum is a wonderful place to get advice and help whenever you have questions or feel the need for advice.

There is also another online forum where the choice of urinary diversion has been discussed extensively. This is the (American) BCAN forum. Search at
http://www.inspire.com, and look for Bladder Cancer Advocacy Network.

Good luck with your decision. I have heard many times that no matter which diversion a person chooses, in the end they almost always end up being happy with the choice.

[millize]

Hi Charg We are here to support you as best we can. Ask any questions you feel comfortable with.There are a lot of experience people here.

[Michele_Z]

Hi Charlene!
Sorry to hear about your diagnosis and so great that you found BCC! By now you’ve probably had your appointment with your urosurgeon and have more detailed information about the different diversions and associated surgical and after care procedures. That said each diversion presents a new set of circumstances that require adjustements to your daily life.

It was a difficult decision for me too. I was diagnosed with high grade invasive BC just before Christmas 2011 at the age of 49. I underwent intensive chemotherapy and then an RC March 29, 2012 with creation of a Neo bladder (today is my third year anniversary!). I was leaning towards an indiana pouch (IP) with an ileostomy as my back up plan but after further discussion with my urosurgeon I decided to go with a Neo. I’m very active, fit and body-aware so I felt that it was a better option than the IP for me. The ileostomy remained (and still remains) my back up plan.

Following surgery the greatest challenge was learning how to pee again. The difference is in the sensation – a Neo is made of bowel not muscle so the sensations are different, and the ability to train my urethra. There is a lot of information and experience that I and others can share re: post op care and training for continence. As women we have wider pelvic structures and shorter urethras. I was able to keep my gynecological organs with the exception of my ovaries so I maintained most of the integrity of my pelvic cavity/ligaments.

This is a big surgery so whatever your decision please remember to be patient and kind to yourself. The adjustments post RC will take time no matter what diversion you choose. Know that there is lots of support for you through BCC so just reach out for what you need.

Let me know how else I can help you along the way!
Michele

[marysue]

Hi Charlene!

While I’ve not had to face an RC, I just want to welcome you to the site and wish you the best going forward. It looks like you’ve received some excellent advice already. Keep us posted. (((((HUGS))))

[Jack Moon]

Hi jontomasz

Just call Randy and he will set up telephone conversations with survivors with IP diversion.
Call 1-866-674-8889 and leave a message and Randy will contact you.

All the best,
Jack

[fighterm]

There is this link that explains different procedures, http://my.clevelandclinic.org/health/treatments_and_procedures/hic_Urinary_Reconstruction_and_Diversion

[KIOWA]

I have fortunately not had to have an RC but I want to wish you well. I will keep you in my prayers.

Kiowa

[fleabane]

Hello, my fellow Canadian friends! I am new to this forum and wish to introduce myself. I am from the States, in particular the southwest, thus the screen name fleabane.

Here are my statistics

10/2014 TURB dx TCIS at 56y F
11/2014 Mitomycin-C X4
12/2014 BCG X6
03/2015 pathology second opinion from Johns Hopkins T1
04/2015 changed urologist – first urologist didn’t want to be bothered, second is heaven sent after dealing with the first gnarly bastard – waiting to scheduled 2nd TURB

Looking forward to joys/ideas/complaints/fears/etc. with all of you.

[marysue]

Hi fleabane: Love your screen name! Welcome! Sorry that you are dealing with bladder cancer but join in with the rest of us. You will find love, humour, sadness and the lot here but we all care about each other.

I too, had to change uros. My first one was a good surgeon but non communicative in answering questions and just expected me to follow orders blindly. That and the fact he put me through a very painful rigid cysto exam ended our relationship. The gent I have now also is like night and day. He answers questions thoroughly and makes sure that I’m okay before we proceed with a cysto. I feel this guy has my back. That is what you need dealing with bladder cancer.

Please keep in touch and let us know how it goes.

[Author]

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