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If I am going to die I don\'t want to know!

8 years 7 months ago #42114 by rbmc
As far as the topic of your post, I would LIKE to know. It gives one a chance to enjoy the (unknown) time left. A first terminal stage cancer in the family helped me understand this. A second helped me realize the benefits. Hope this doesn't sound harsh or rude to you, but that's my opinion.

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8 years 7 months ago #42110 by GKLINE
That is OK
Most people who post here the first time have a negative first post. They are here because they got some news they didn't like, and are sure their world is coming to an end.
Please follow up and get a cystoscope done. This is where they look physically into your bladder. The camera will help determine if you have bladder issues.

Rule out everything you can FIRST.

Don't self diagnose. Please don't worry yourself and give up. Like most things I deal with..... Get them early before they fester. I had traces of blood in my urin for about 8 months before I sought a Dr.

YOU still have a life worth living.... Don't give up on it!


Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
New Man! [/size]

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8 years 7 months ago #42107 by sara.anne
Yes, you are facing some very difficult issues. Wish we could do more to help you with them.

It seems as if you are the one that is carrying a huge part of this load. Please remember that your husband needs you now. You need to get on top of your health issues, whatever they are, and get them taken care of so that you will be there to be strong for him.

As others have pointed out, there could be multiple other reasons for the lab abnormalities that have come up. AND, if the diagnosis were to be bladder cancer, a lot of it is highly treatable. Practically all of us who are posting on this forum, and the over 4,000 registered users, have been diagnosed with bladder cancer and are still here to talk about it with you.

Yes, it is always better to find something earlier, rather than later. But a two-year period is not that unusual.

Get this, whatever it is, diagnosed and, hopefully, taken care of. After you have a definitive diagnosis you will have time to think about your response. I lost my husband to cancer, so I know how frightening this realization can be. Stay strong for both of you.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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8 years 7 months ago #42105 by mmc
Sorry for all of your troubles.

Two years does not mean anything necessarily. Low grade bladder cancer can take many years to become a threat. Follow up on the tests and rule it in or out. There are lots of things it can be that are not bladder cancer.

Not knowing, but at the same time believing (as you stated in your message) that it it has already spread and is going to kill you is likely more damaging than if it is cancer. It's not all that likely that it's everywhere.

Bilirubin levels are typically not related to bladder. It is gall bladder, liver damage, or Gilbert's syndrome. There are other reasons as well.

Getting the tests done is the most prudent (and likely best) path forward.


Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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8 years 7 months ago #42104 by Flamenco.
Hell Truivia,
Just read your post and felt very sad for all the problems you are going through, especially with your husband. I know this is easy to say, but don·t panic about your own health, follow the advice of your doctor, and get whatever tests done that he reccommends. I am not a medical expert, but I think high bilurubin levels can have a number of treatable causes, not linked in any way to cancer including such as a gall bladder stone. As fot the blood in the urine, they need to find the cause, but as you will realise if you read the info here on this site,if it is bladder cancer, it is very treatable in most cases. Your husband needs you to to be strong for him,and you must take care of yourself, that means finding out what is wrong and getting the treatment . I am sure others will post and advise you, but in the meantime , take a deep breath and concentrate on getting a correct diagnosis so that the experts are able to help you.

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8 years 7 months ago - 8 years 7 months ago #42102 by Truivia
I had to have surgery for something totally non related to my bladder issues in March 2010. While getting all the pre surgery tests done my urine showed bilirubins and red blood cells in it. The Dr had me get it rechecked at 3 different labs 5 different times. It always showed high bilirubins and sometimes showed blood and other times no blood.

I had my surgery and it was months and months before I recovered from it. Then we had a 2 deaths in the family in less then 1 yr my husband lost both his parents. Then he got very ill and now has a fatal condition. The Drs are saying he has 2 to 5 yrs.

I finally made it to see y own family Dr 2 weeks ago and he was very upset I had not followed up on the urine issue. He did 3 more tests at 2 different labs and said the bilirubins are off the charts and lots of red blood cells.

Now I need to make some hard decisions. My husband has <strong>NO</strong> family left but me. He can't take care of himself!

If I have bladder cancer and that is what my PCP said he thinks it is then after having it for at least 2 yrs (who knows how long before March 2010) I am sure it is now at a bad/last stage and has spread around.

So if that is the case then I am going to die. So I am thinking of not going in for more tests. I can't handle watching my husband die and know I am dieing too!

I have tried & tried to find out how fast it can spread and I can't. But seriously 2 + YEARS is a longgggggg time!

I have a major spine injury and thought that my bladder issues of peeing myself as I did not make it on time or having to run my hand under running water in order to go even though I feel like I have to go really really bad was all due to my spine injury. But my PCP said that would not make my tests come back like they did.

Looking back I wish I had been given a clue how serious this was. With my spine injury my surgery & recovery and husband losing his family and them him getting this fatal disease it honestly just went out of my mind that it could be more then a issue with my spine.

I sure hope no one here feels I am disrespectful of their own battle to live. I already feel like my world is coming apart and then if I have this cancer I know I won't be able to hold myself together.

I am sorry that my very first post here is so negative. I just needed a place to vent at.

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