Member Blogs

One year ago today, I had a 75 gram bladder tumor resected. The diagnosis was apparently tricky and I saw terms such as sarcoma, sarcomatoid variant and carcinosarcoma on various reports.

I asked the urologist “Is it survivable.” He looked down and didn’t say a word –
Not the “no” I was dreading nor the “yes” I wanted to hear. Then he said I should go to a major cancer center for treatment and I got the impression that meant a r/c.

Since then, I have had chemotherapy with six different drugs and no objective response to any of them. [The literature I have read suggests that sarcomatoid

Comment (0) Read More...

Now for the surgery part. Dr. Schoenberg went in after fluffy,(for those of you that don't know that's what I call the b.c.) and then I woke up in the recovery room knocked for a lope! They said they we're going to make sure I didn't crawl off the table, lol. I think I am still under the influence because I can't think of the rigt way to spell lope! oh well, Dr.S came to talk to me for a minute ,and now I just wait for the path report. But what I really wanted to know is how soon I could go skiing ! For me skiing first thing is like going to the gym, it's how I try to beat the chronic pain I

Comment (0) Read More...

Hi everyone , Well I went to John Hopkins yesterday for my preop talk, I told them that I have a habit of trying to get off the table and leave if I am not knocked out enough !( I guess thats my hiking part kickking in Rosemary !! lol ) They assured me they would not let that happen !! thanks for the forwarning .
  We stayed close to the harbor since we had the rest of the day and night to kill (we live about three and ahalf hours away). My husband and I did the tourist thing and went exploring , I FOUND A BARNES AND NOBLE !! I could have stayed there alllll night, books everywhere ! My

Comment (0) Read More...

Well, since last I posted to this part of the forum, a lot has happened, actually --less to do with my treatment (though there is news there, too) than with reasons to live "beyond expectations."

I do have an appointment set up with a metastatic bladder cancer specialist at MD Anderson for March. In the mean time, I'm trying to get caught up with non-cancer medical issues, teeth, blood pressure, etc. I continue to feel well, generally,
but it is hard not to panic everytime I have what could be just a little "normal" ailment. For example, I felt "bone tired" yesterday morning and was afraid I'd

Comment (0) Read More...

I'm just wanting to add something that I wrote to another user of this forum a little while ago. Writing the more painful (delays, bad news) parts of my story
has been hard for me.  I find it hard to do because I do think I "should have could have" been smart and assertive enough to have gotten a diagnosis before my cancer got to be the mess it has been at and since my late diagnosis. I do not like to feel stupid, disrespected, etc. any more than other folks do. I need to put part I and II (II pre-Bladder Cancer Web cafe)behind me though and to try to learn to help myself and I hope others

Comment (3) Read More...

Hi everyone I am trying to update my story so I am sorry ahead of time if I'm not doing it right.
  Well I have been skiing alot trying to stay in shape and waiting to go to my 6 week  check up .And guess what ? when I got there they told me it was the week before !! It's a three and ahalf hour ride to get there. God love my husband he just put his arm around me and said,"don't worry honey I'll bring you back ."     
  went back yesterday, some resident came into scope me first and she really hurt me! She was really ruff and didn't wait for the numbing to work, anyhow the Dr. came in and

Comment (2) Read More...

UPDATE:

Sorry I havent been around for awhile.

Ok, Dad finished his BCG back in Nov & was to wait 6 to 8 weeks for cysto & bi-op. Well this was preformed yesterday & guess what?  ::)more tumor,  ::)now waiting on path results & ct scans. They said that it would be more than likely that they will go ahead with r/c, sooner rather than later, feeling a bit low right now, :'( I said to Dad, At least there will be know looking back saying "what if" they had tried this "what if" they had done that. Been there done that & after living with Bladder cancer for 17 or 18 years & having many, many tests,

Comment (0) Read More...

To read the most complete version of my story, please read Part 1 as well as this part, Part II.

Here, I am writing a continuation after CT scan has shown more lesions, growth in
at least one liver lesion, and a possible lesion in a new location (with follow-up
testing recommended.) This while receiving Genzar and Taxol. Also, yesterday I
had a turbt (and am at home, with a catheter.) I don't know the exact dimensions of the calsified tumor removed, but it was a lot smaller than the "softball" sized one removed last year.)

I write with a subjective description of my almost-a-year since diagnosis.

Comment (0) Read More...

after 3 times with bladder cancer I have been cancer free for over 2 years. but I will never forget my friends here that have helped me thru the ruff times-* thank you so very much my prayers are with you

Comment (1) Read More...

In January 2007, the bleeding became continuous. I went to my present primary care doctor and was told that I should take antibiotics and see if it improved. I called back when the big clots started coming but was told (by a nurse) to just keep my regular appointment. I didn't get to that appointment because I had to go to the hospital with "frank bleeding."  I got a referral to a urologist while hospitalized and had a tur after being transferred to a hospital repaired enough to do it. Pathology: Stage 3 high grade tcc with sarcomatoid features. Some tumor remained after tur. The tumor has

Comment (0) Read More...