Hi Friends

I am a 68 year old male. I live in canada.

I just want to touch base with other people

with the same issues.

[JustRita]

Welcome to this very informative and helpful group of BC sufferers and people who care 👍

[ilovecountrymusic]

G'day from I love country music from Australia . Chat away if you wish.Five years tomorrow they did the operation that saved my life Stage 4 Aggressive..Still here..This is funny.One of my sisters flew to Canada today for a wonderful holiday

[brimas in reply to ilovecountrymusic]

hi was it your bladder

[monica412 in reply to ilovecountrymusic]

What a great day! Five years is a real milestone! Best wishes for many more healthy years! You're my inspiration! monica412

[ilovecountrymusic]

Yes Bladder removed. I have a stoma. Initially very unhappy not happy but alive and really had not choice ..Bladder Cancer T4 aggressive .Tumour was in the wall muscle as well..

[come-unto_Me]

I'm 73 years young from Belfast in Northern Ireland. I had a tumor removed in December last year, regretfully they could not remove all as it had spread into the muscle and caused secondaries to lodge in my lungs. They treated the remainder of the tumor with 20 sessions Radiotherapy over 4 weeks which ended 9 weeks ago, they then started me on Chemotherapy the first session of 9 weeks have just finished and I am having a scan this Friday and a meeting with the Oncologist is set for next Tuesday to get the results. It has been a long road to reach this moment. It is my prayer for good news next week. Take care and God bless.

[Rayd in reply to come-unto_Me]

Good luck buddy.

[FergDevins]

Hello there fellow Canadian. I am a member of the board of Bladder Cancer Canada, and "national walk lead" for 2016 as well. We have some wonderful resources through bladdercancercanada.org - if you have not yet found them. There is a forum on that web site for discussion. We also have patient to patient consults with patients who have gone along this journey. We have many volunteers who have had non muscle invasive bladder cancer (I'm one), as well as a number who have had their bladder removed. I'm here to to connect, help, and find answers that you might be looking for. Regards.

[madnanny in reply to FergDevins]

. Hi FergDevins, you seem to be more advanced than the UK in this fight against BC , my Husband (83) is awaiting the results of his last biopsy after having his tumour removed and 6 weeks BCG therapy, the surgeon was hinting that if the biopsy is not good then they can always remove the bladder, he was quite distressed about this and at his age you can imagine not looking forward to the results I would think that it would be really helpful to be able to talk to some one that has had their bladder removed to find out how it all went and more to the point was it worth going through.

[FergDevins in reply to madnanny]

Let me check with our patient care folks and get back to you.

[FergDevins in reply to FergDevins]

OK - here's the information for the UK for the Bladder Cancer organization (and we think they do some pretty darned good work too)

Website: fightbladdercancer.co.uk

Or their face book discussion forum

facebook.com/groups/bladder...

[Jimpa in reply to FergDevins]

I also have non muscle invasive bladder cancer. MRIs indicate cancer has not spread outside the bladder so that is good news. Am now going thru chemo and will have bladder removed at USC Keck School of Medicine in probably late August. Have to decide between stoma (bag for life) or neo bladder. Any advice? Thanks

[Gareth_G in reply to Jimpa]

Hi Jimpa.

I am 56, and from S, Wales, UK. I had muscle invasive bladder cancer. it had shrunk a little due to chemo. I had my bladder removed 3 weeks ago, and had a Neo Bladder reconstruction. It is major surgery (9 hours) but it was worth it. Im left with 2 catheter bags at the moment (supra pubic and ureatheral). Im having a cystogram next Monday to make sure there are no leaks in my neo bladder, then i will be loosing my other 2 bags.

I think its worth it in the long run.

Regards Gareth

[Jimpa in reply to Gareth_G]

Thanks very much for the info, very helpful. The two bags you have; not familiar with supra pubic; where does that exit the body? When you lose these 2 bags will you have to do any self-catherization or is all supposed to work as normal? Are there those out there who have done the "bag for life" and are happy with the decision? I'm really conflicted about my decision between the two choices.

Thanks Jimpa

[Gareth_G in reply to Jimpa]

If you go for the Neo Bladder, initially you will have 4 bags.

1. Drain

2. Stents, to drain urine from kidneys

3. Ureathrel

4. Supra Pubic.

After a couple of days the Drain and Stents bags are removed.

When your left with 2 bags (Supra Pubic and Ureatheral) it allows you to flush out your neo bladder of the mucus that builds up, but that will get less and less as the weeks go on.

The Supra Pubic Catheter exits on my side just above my left groin, so i can flush though to the Ureatheral, and vise versus, so you are flushing your new bladder every 4 hours (so basically you have an entry and exit point for flushing).

My bags may be going on Monday, and now and again i may have to self cathertate to make sure my bladder empties.

Hope this is helpful.

[Jimpa in reply to Gareth_G]

Garett,

Thanks very much for the detailed info. It was very helpful. I know I have a tough decision to make and your input was very helpful. Hopefully, I will get more information on a stoma to make things clearer.

Jimpa

[twin2boys]

Hi, my husband was diagnosed with Aggressive Bladder Cancer it will be 11 years ago in July. His Dr. was afraid they would have to remove his bladder. They Did surgery twice to remove the cancer. He had 2 sets of BCG treatments and thanking God, he has been cancer free since. He stays on top of getting his checkup. He was going every 3 months in the beginning then every six months and then every nine months. Now he only has to go once a year. Don't give up. It was after the second almost 3rd year after his surgery when he was diagnosed cancer free. God bless you and your Dr.