Any bladder cancer survivors?

[PatsMom]

I was just given a firm diagnosis on Tuesday and am still a little bit in shock. I am scheduled for surgery on August 5. It is not terribly extensive, they will go in through the urethra and scrape out the two tumors. I understand that after that is done, they will determine the stage of the cancer and we will discuss which, if any, follow up treatment is needed. Best case is the tumors are superficial and low grade and have not invaded the wall of the bladder. Then I get away with just having frequent follow up cystoscopies.

Worst case is that it has spread beyond the bladder, although the scans show no sign of that right now.

Anyone else been though this? I know there is a whole thread of breast cancer survivors but I don't remember seeing one for bladder cancer.

 

[luvmarypoppins]

Sending you a . I am sure just hearing the "C" word is like someone punching you in the stomach and taking your breath away. I am on the breast cancer board, but they adopted me, I have thyroid cancer.

Just yest. I talked to the lady at my church. Her son has bladder cancer. He is doing great. He had to have the bladder scraped out twice.

Its good your scans show it hasnt spread. (Mine spread to the lymph nodes). Wishing you all the best.

You may want to ask if your hosp. has a support group too. If you are interested in that.

Hang in there!

 

[grumpeeduck]

DH's father had this and they did the surgery as you described, and he was totally fine-it had not spread anywhere else. That was several years ago, and he goes in for a check-up every 3 months and it has never returned! I wish you much good luck and am sending prayers your way! Keep us posted!

 

[PrincessKsMom]

 

[AndreaDM]

My FIL has battled this for the past few years, but finally seems to be doing ok. The first time he was given some kind of treatment (not chemo) but a year later it was back. So, he actually had his bladder removed and a synthetic one put in. Recovery from that was pretty hard on him (he's in his 60's and a diabetic) and he lost a lot of weight. He had a catheter for a few months but for the past year has been doing great. He goes in every 3 months I think for a check-up and scan, but it's all been clear.

I'm sorry you're having to deal with this. It does seem like it's not a very common type of cancer and thus not as much info, support groups, etc. Praying you have a quick recovery and that it hasn't spread.

Just a note too, the ONLY sympton he ever had was peeing blood ONE time. No pain, nothing, and he probably would have shrugged it off but MIL forced him to go to the Dr.

 

[Aneille]

First off I can't imagine what you are going through.

My Dad had bladder cancer. This was back in 1991 I think. I was in high school. They did a initial removal like you are having but his cancer was worse than that and ended up removing his bladder.

He opted for an Indiana Pouch and although it wouldn't say its perfect he feels it is far better than having a bag on your leg. You can search on Indiana Pouch to learn about it.

He is in his 70's now and doing very well. He's otherwise a very healthy guy for his age, and he has been cancer free all this time.

It certaintly took him some time to get used to it but life went on and he dealt with it and I think he feels blessed that he had good doctors and family to help him out.

http://www.inspire.com/groups/bladder-cancer-advocacy-network/

 

[Aneille]

Just a note too, the ONLY sympton he ever had was peeing blood ONE time. No pain, nothing, and he probably would have shrugged it off but MIL forced him to go to the Dr.

That was the only symptom for my Dad too.

 

[PatsMom]

Thanks for all the good wishes and stories of those who are doing well. The only symptom I had was blood in the urine. I was anemic badly for a while before I started seeing the blood in the urine. The doctors think it was there, just not visible to the naked eye.

The first two times I saw my doctor about the blood, they assume a UTI - very common in women my age. When it happened a third time, an alert nurse practitioner said this was not an infection and started the ball rolling to get tests done. I am very grateful to her.

luvmarypoppins - you are right - hearing the C word and having it apply to you is like a punch in the gut. I am a long time cervical cancer survivor but when I was told I had that I was 20 years old. At 20, nothing gets you down or makes you worried. At 50 you look at your daughter and hope you will be at her college graduation.

 

[Aneille]

I am so sorry that you are having to go through cancer again.

. At 50 you look at your daughter and hope you will be at her college graduation.

You are around the same age as my Dad when he was diagnosed. Try to keep your spirits up. You will see your daughters college graduation, her wedding day and the birth of grandkids. I know my Dad worried about these same things but he came through it, so many others have as well, and you will too.

Try not to get too down. Your are obviously a fighter and a winner, keep thinking like that.

My Mom had leukemia a few years ago (she's doing very well now too) and I was amazed by the courage she had and the faith she had in the doctors and that she would be okay. She had that same energy when it was my Dad going through it.

I think positive thoughts really do help.

Keep your friends and family close and your mind busy.

 

[cabmom]

Hi, my dad has had bladder cancer since 1988. He goes in every 3-6 months and has tumors removed. They don't always find some. He is 79 this year.
He smokes and has been told that is why they keep growing back. He refuses to quit smoking.

I hope this gives you some reassurance.

 

[PatsMom]

Hi, my dad has had bladder cancer since 1988. He goes in every 3-6 months and has tumors removed. They don't always find some. He is 79 this year.
He smokes and has been told that is why they keep growing back. He refuses to quit smoking.

I hope this gives you some reassurance.

Thanks for the reassurance. Smoking is the number one risk factor in bladder cancer. I quit three years ago and was feeling like my risk should have dropped. Although I suppose if I was 79 I might have a different attitude.

I've been researching today instead of working. Bladder cancer has one of the highest recurrence rates of any type of cancer - 50 to 80%. That is one of the reasons it is the most expensive to treat. I guess I am very glad that at least I don't have to quit smoking again.

Although I told my co-workers that they would know if I got told it was Stage 4 because I would show up at the office smoking again! And living on cookies (I am also a diabetic).

 

[WhateverLolaWants]

No personal experience here, but another uplifting story of my mother's friend who kicked bladder cancer's butt no more than a year after kicking breast cancer's butt. Wishing you the best

 

[C.Ann]

My late DH's former MIL from his first marriage had bladder cancer.. I don't remember what the treatment was - and she was in her late 70's when diagnosed - but she lived many years after that and passed due to another unrelated health issue..

I'll be praying that they have caught it in the early stages..

Best of luck!

 

[Sheree Bobbins]

 

[quasar4legs]

I have a friend (non-smoker, non-drinker) that was in her late 30's when she that was disgnosed with bladder cancer about 10 years ago. She is cancer free today and doing very well but does need to take quite a lot of medication.

Hope things go well with the surgery

 

[DMRick]

My best friends hubby (and I guess I'd consider him pretty much my best friend too) has had it recur on and off for years. He's gone a long stretch (prob about 5 years) with an all clear. He only has one kidney and somehow it's related to that. We always worry about him, but he seems ok with it, and is doing great. He's had what I think they call seeding in the past. I think we've discussed his bladder more than any other thing over the years.
The word cancer is hard, especially hearing it attached to your own name.

 

[ZachnElli]

My brother a few years ago. It was superficial so no chemo, just testing every 3 months, then 6 months. They did fine more blood in his urine a year later and he went through all the tests and camera in there all over again and they couldn't find a source for it. But they've cleared him, gets checked once a year. Hopefully, it will be superficial for you too!

 

[MoniqueU]

It sounds like there are alot of positive outcomes with this. That sounds great and I hope you cling to these stories instead of the worst case scenario. Best wishes to you.

 

[MinnieTink]

All the best to you PatsMom. My father just had this surgery a week ago. At the time the Dr also did a chemo 'wash' inside his bladder. There is no other treatment planned at this time. Today we were swimming in his pool together like nothing happened. He's doing great.

I love the Dis. I appreciate reading all the good outcomes too.

PS the breast ca thread is great for support for other cancers too, as lmp said. I'm on there too... My mom was diagnosed 3 months before my dad, with breast cancer.

 

[aprilgail2]

My uncle had bladder cancer- had treatment and was fine....he lived 25 years after that diagnosis and died from something totally unrelated!
good luck to you!