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I\'m a mess

8 years 4 months ago #39356 by Patricia
First of all where are you located? Lets get you to a top bladder cancer specialist at a top site.
After your first removal and a diagnosis of non-invasive low grade bladder Sara Anne said a second TURB is recommended within 2 to 6 weeks after the first. If the uro did not get all of the tumor and clean margins it can re-seed. You need a second opinion NOW. We can help with that.
You may just need maintenance with BCG if it is still non-invasive...
If it is invasive cystectomy does not mean having to buy your plot. Key here is getting a top surgeon who does nerve sparing surgery. Top cancer centers are Memorial Sloan, Johns Hopkins, Vanderbilt, USC/Norris, MD Anderson and i can go on ...but just tell me where you are .........pat

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8 years 4 months ago #39355 by sara.anne
Bobby, take a deep breath. This IS something that you can deal with....
First, a couple of questions. When you said that you are scheduled for surgery, what kind? Are they recommending cystectomy (bladder removal?) Or is this surgery a TURB (transurethral rection of the bladder?) Do you have the pathology reports from the biopsies?

The thing about bladder cancer IS that it comes back...that doesn't mean that your condition is especially bad. In fact, it is very possible that this "new" tumor is not new at all, and that CIS has been there from the start. It is very common for a competent urologist to do a TURB to biopsy suspected tumors and then, several weeks later, to do a second TURB to be sure that all tumors were found and biopsied and to be extra sure that there was or was not muscle involvement. It is apparently easy for them to miss things.

Where are you located geographically? If you have read much on this site, you will see that our motto could be "GET A SECOND OPINION." In spite of bladder cancer being relatively common, many urologists are not experts in this area, since they see many more prostate issues. It would be a very good idea, especially given your age and your hopes for the future, to seek a second opinion at a major center that has real expertise in the diagnosis and treatment of bladder cancer. I am sure that some of our members can offer recommendations close to where you live.

One thing about bladder cancer is that it is highly treatable in most cases. You want to get the very best care you can.

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 4 months ago #39354 by str0le
Well, I don't know what to do and I'm new to this...(not knowing what to do.)

I'm 34 years old and was diagnosed with bladder cancer in May of 2011. I found out because the tumor was bleeding and would not stop and I had an emergency removal of the tumor. The pathology report revealed that it was a low grade non-invasive malignant cancer. However, at my three month follow up, a new tumor has grown and there are 3 red spots that may be signs of what the doctor called CIS. I'm scheduled for surgery at the very end of this month.

Now, I have been reading and thought that all would be okay since I found out so early. Now, as I read and speak to people, I somehow have come to believe that because it has grown back so fast, it may no longer be okay. I have no idea what to do.

I have been sufferring illnesses such as Gout since I was 25. Another disease that is supposed to happen when you are old. I don't feel that I'm old enough to have bladder cancer, but apparrently Cancer doesn't discriminate.

What makes it even more frustrating is that I've finally moved up the ladder to land two, not one, but two CEO jobs of multi-million dollar companies. Why is that so important? Because I was pretty much homeless 14 years ago and when i got married 13 years ago, I worked my butt off to get to where I'm at. Now I get cancer? I'm not done doing what I do. I still want to build more for my wife and children. I'm told to take a rest from my 60 to 70 hour work week, but now I feel I have to work more just in case. I'm probably over reacting, but I just can't stop it. I even went out to get a plot for my gravesite. I'm even trying to buy a car for my 13 yr old so that my wife won't have to worry about it when he turns 16. To do all this, I must work harder and faster. But I'm told to take a rest. I just don't know what to do.

And the thought a having a cystectomy scares me. Honestly, I can admit it, that I'm insecure. I have a beautiful wife of 13 years and the thought of not having sexual intercourse with her scares me. How can she be without it for the rest of our lives if I have to have a cystectomy? So much to think about.

Anyone have any ideas of where I should go to from here? Counseling? Just cope with it? All of you seem so knowledgable and any help you may have would greatly be appreciated.

Thank you,

Bobby :S

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