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anyone here also have experience with bladder cancer?

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Posted 3/25/2012 10:00 PM (GMT 0)
A family member has it, very early stage and confined apparently. 80% was removed via a procedure with cystoscopy and they're going back in to get the rest the same way. then they're jumping straight to chemo. I'm completely ignorant about bladder cancer but wouldn't there be options like seeds or radiation before jumping to chemo?

surprised HW doesn't have a bladder cancer forum. Imagine it's quite common.

Post Edited (davidg) : 3/25/2012 5:08:23 PM (GMT-6)

Posted 3/26/2012 10:04 AM (GMT 0)
A good friend was dx'd with bladder cancer about a year and a half ago. His case, and a lot of others I am told, the bladder is removed, and prostate as well, and an ileal conduit was constructed to the abdomen where he wears a urinary bag. He was given the option of having a neo bladder made. I think one of our members "neo-man" went this way but I am not sure he started with BC. Hopefully, he will post and shed some light om this. Looks like your family member was at least fortunate enought to be spared the radical cyctectomy. In my friends case he did not recieve RT or chemo post op. He is doing good so far.
Posted 3/26/2012 11:49 AM (GMT 0)
Hi davidg.

My 84 yr old Uncle (Now 86 yrs) had same procedure as Knotreel's friend (above) in 2010. So far, so good - managing the appliance and back his life. Lost a lot of weight, but  has now put some of it back on. He continues to do well,  but has not had RT or chemo, so to this point surgery has been his only treatment.

Posted 3/26/2012 11:49 AM (GMT 0)
I have bladder cancer as well. However, mine (so far, thank G-d) has been limited to superficial tumors that can be easily (?) removed via a cystoscopy. To date I have had three removed over the past 4 years. still go to a urologist every three months for a scope, (which incidentally led me to my PCa discovery).

I had a BCG treatment 18 months ago, and since, there has been no regrowth. BCG is a bacteria which alters the environment of the bladder, which makes it harder for the suckers to regrow. It is a treatment in which a bacteria is introduced into your bladder, which you have to hold for four hours (don't get me started on how impossible this is), once a week for six weeks.

I don't have much info on chemo. Good luck to your family.
Posted 3/26/2012 12:19 PM (GMT 0)
Thanks, All and Tenpin. I will definitely pass along the info of BCG as this seems like a less radical approach at this early stage. In this case they are positive it is confined and that they can remove it all via cystoscopy so I'm confused as to why they would jump to chemo right away. Thank you.
Posted 3/26/2012 6:53 PM (GMT 0)
i am concerned about bladder cancer myself, as i had that 72gys of radiation hit my dry empty bladder directly, where it was bad enough to burn me physically, and rendered my bladder unusable for life, thus the need of the urostomy. with all my radiation exposure in the past 10 years or so, i am concerned about developing secondary cancers. this is a topic that my oncologist is going to talk about on my next visit. since i can't physically have a scope up my "weiner" any more, going to talk about having a virtual scan done of my bladder and bladder walls.

good luck to the person that is currently afflicted with BC.

david in sc
Posted 4/1/2012 9:52 PM (GMT 0)
Bladder cancer (BC) comes in worsening stages and grades.

If it is stage 1 or 2, then BCG (which some think of as chemo) is normally the treatment recommended. If it is worse, then chemo is thought to be the best initial treatment and then maybe have the bladder out (especially if the chemo hasn't cleared all signs).

Standard treatment is to have the bladder out anyway, as BC is highly recurring, unless the disease is too far gone (stage 4 - metastatic).

A newer alternative is to keep the bladder and do chemo + radiation after surgically removing the tumour and as much surrounding tissue as is thought to be cancerous.

A major review is that of Dr Bajorin:
http://www.asco.org/ascov2/MultiMedia/Virtual+Meeting?&vmview=vm_session_presentations_view&confid=55&trackid=3&sessionid=39

I was diagnosed initially stage 3, then 4, grade 3, metastic. Too far gone to do anything - waste of my time (and theirs) and painful. They (4 expert doctors) told me I had weeks to live. So I still have my bladder.

Wrong. That was 4.5 years ago. I did have chemo, after (a) I was told it did have a 5% chance in cases like mine; (b) I had been admitted into the local hospice to die.

More details about my story, bladder cancer, and cancer in general in my blog: www.bladdercancerfight.blogspot.com
Posted 4/2/2012 12:23 AM (GMT 0)
Pc-->"Bladder Cancer"

I had some residual cancer cells in the bed of my removed prostate start multiplying rapidly, creating a tumor adjacent to the bladder. THEN it started intruding INTO the bladder neck. A "tongue" of prostate-based cancer sealed off my urethra exit to my bladder and I had to have it surgically removed (scoped via the urethra). THEN the tumor CHARGED into the bladder and caused all sorts of mischief, so I had 80 Grays of radiation to subdue it. So far, so good, but with a Gleason 9 prostate cancer, any "truce" is merely a "cease-fire". I am not optimistic that my bladder troubles are over. Chemo may well be in my future.
Posted 4/2/2012 5:16 PM (GMT 0)
I had a scare about bladder cancer I had some bleeding an two doctors thought it could be bladder cancer I had it checked out. They didn't find any thing I was very grateful still don't know what has caused the bleeding but it must not be serious. When I read up on bladder cancer I was very afraid more so than with Prostate cancer.

 

Posted 4/2/2012 5:59 PM (GMT 0)
thanks all. have passed the information along.
Posted 4/2/2012 10:00 PM (GMT 0)
I also have bladder cancer, it was discovered as a result of an ultrasound scan of the prostate which showed up bladder abnormalities too. After a cystoscopy to confirm thv presence of tumours, I had a transurethral resection under general anaesthetic followed by a single infusion of mitomycin; the pathology showed that the tumours were low-grade and non-invasive ( as my surgeon had suspected as soon as he saw them via the cystoscope ) so no further chemotherapy or surgery was deemed immediately necessary.

However bladder cancer can be highly recurrent, so regular cystoscopies are necessary in case it returns; in the UK these are usually done every six months, unless or until several consecutive cystosopies show no recurrence in which case the interval is extended to yearly. In the case of recurrence, if the tumours continue to be superficial like mine then the previous treatment can simply be repeated and this can apparently be done a number of times. Higher grade tumours can be dealt with via BCG chemotherapy, but if they start to invade the bladder walls, particularly the muscle layer, then removal of the bladder is usually recommended.

I've been comparatively lucky so far, but I'm due for another cystoscopy very soon and I'll breathe much easier if no recurrence is found !
Posted 4/12/2012 12:32 PM (GMT 0)
Well, sorry for being late, I was checking to see if a fellow BC friend with a AUS was plugged in as I guided him to this forum

If you have BC (Bladder Cancer) it depends on the stage of cancer you are in. Stage one they to a procedure called BCG or simular routes where they put various chemos or live vaccine into the bladder to kill the cancer. BC is very aggressive and eventually it will come back and it is not unusual for BC to go from stage 1 to stage II or III even when being watched closely.

Stage II, or muscle invasive , they remove the tumor for biopsy and since they did that, I went for chemo then surgery to remove the bladder. It is rare for them not to remove the bladder if you have stage II. BC is very recurrent and is a killer if it gets outside the bladder (stage II-IV)

I suggest if you have stage II (other stages have other procedures) chemo 1st, then RC (radical cysectomy or removal of the bladder) gives you the best chance to LIVE.

I am afraid if it gets into the body and gets started,......

NEO
Posted 4/12/2012 3:14 PM (GMT 0)
Just another input,
I have a guy I know here in Vegas that had this cancer and he had his bladder and prostate removed. In lieu of a urinary bag he had a procedure that used a section of his intestine that was removed and designed to act as a bladder. He had an AUS installed and he is doing well after 5 years. His one side effect he told me was the intestine still produces a mucus like substance that shows in his urine. I don't know other details other than he is a Facebook friend and I see him traveling and doing well. He was about 52 when he was Dx and this was a very unheard of story to me but I don't know much about bladder cancer.

Tony
Posted 4/15/2012 4:18 PM (GMT 0)
I have the intestine bag (thus my name NEO) is called a Neo-Bladder. I also have the AUS. The mucas is because the intestine still thinks it is processing food and the mucas moves it along. It only becomes an issue if you have a Foley Cath or have to cath to void then it can plug up the cath. Since I am incontinant, it does not matter. If I give a sample of uringe to the nurse, of course it looks like I doctored the sample!! haha

On my status, I have gone back to running almost everday 2.5 miles to over 10 miles. lift furniture (I own a store in Conroe TX) and everthing else except for sex, I am normal. I wear a med pad because I do leak once in a while during the day or night.

But back to the original question, I do not think I would be alive w/out the chemo or RC

NEO
Posted 11/1/2013 3:47 PM (GMT 0)
Like NeoMan I had to have bladder and prostrate removed due to cancer. It was at the stage of breaking thru muscle so there was not much discussion to it's removal. Did chemo afterwards, but no radiation. Chemo and my body did not get along so they had to stop giving it to me. I also chose to have the "neobladder" and after 18 months of not getting control the way I wanted, I chose to have an implant to help control leakage. It has been the best thing since sliced bread and I would recommend to anyone. I have had my AUS800 for 6 months and the biggest issue for me, has been patient enough to let it close properly. LOL. My issue, not the device. Any questions, feel free to contact me.
Posted 11/1/2013 4:09 PM (GMT 0)
I had two friend with early stage bladder cancer. The bladder was scraped and a chemo like chemical was inserted into the bladder. It was according to them it was a simple procedure. One had a reoccurrence and the procedure was repeated.
Posted 11/1/2013 8:32 PM (GMT 0)
I had bladder cancer 15 years ago and I had the Tumors removed by a cystoscope and had the BCG for 6 weeks with no sign of any returning cancer.
The BCG works great and has been used for some time for bladder cancer.
I now have PCA but that's a different story.
Posted 11/1/2013 9:20 PM (GMT 0)
Had a friend pass a few years back.

Started out with a bit of blood in his urine. No other symptoms. He thought it was PCa at the time. After Dx he had his bladder, prostrate and a lot of other tissue removed.

He had a psuedo bladder made from intestinal mat'l. He had a condom catheter for leakage and tried to continue working.

Unfortunately, the cancer spread to his kidneys, brain and liver. He passed less than 2 years after Dx.

He was 45.

My wife's great aunt passed from bladder cancer also. Over 20 years ago. Same initial symptoms, same spread. 

Mike

 

Posted 11/2/2013 3:26 AM (GMT 0)
How's the neobladder working out for you? With all the radiation damage that destroyed my natural bladder, a neobladder was ruled out, and I ended up with the Ileal conduit surgery instead, and have an Urostomy. Been 3 years now, the stoma works fine, but of course, only because I wear an appliance (device). Without a good device, I would essentially have total loss of urinary control. The stoma has no feeling or nerve endings, so there is absolutely no sensation when I urinate. The only way I ever know if I am or not, is by the bag slowly feeling.

David
Posted 11/2/2013 4:55 AM (GMT 0)
Bladder cancer spreads more rapidly and CChemo works better with rapidly divideing cells. Not so much, the slower cancer like PCA. The reason you get ur urine tested for blood among others is to catch it early and have them removed easily via the cystoscopy pinch off.Sounds to me like your friend had many focal pt of cancer and uro decided to wipe out anything he didn't get with Chemo. , just a guess. Its difficult to compare PCA treatment with any of the other cancers, in that the rest tend to divide rapidly and PCA does not. Chemo In PCA is usually used in combined treatment forms and with more advanced disease, tho I remember something about its use in early cases in a trial. The above is not solid but have a moderate degree of confidence in its accuracy. Hopefully if I am wrong/way off base, I will be corrected and I welcome that please. If wrong and not corrected refer everything back to ur specialist. ACtually your specialist should have the last word. But some are better than others…way better.
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