First, I want to say how grateful I am to have found this forum. I’ve been reading as much as I can when I can. I am 58, in Houston, Texas and newly diagnosed.
A couple of years ago, I began having short and intermittent “flares” of frequency (not always with results) and pain. These flares only lasted 2-4 hours, once every 2-3 months. I thought I had a fallen bladder and I ignored it. When I wasn’t in a flare, I wasn’t thinking about it. Somewhere along the line they became more frequent and in the fall of last year, I went to see a urologist. Urinalysis/culture clear – no UTI. The doctor started me on Osphena to help thicken the bladder wall and Vesicare for frequency. The Vesicare didn’t help at all and neither did the Myberitriq he prescribed after that. In November 2016 he did a cystoscopy and said that I had a very “angry” bladder. We discussed Interstitial Cystitis. My symptoms fit this to a tee. Since there’s no known cause or cure for IC, there wasn’t a whole lot he could do other than try to treat the symptoms. He started me on Hydroxyzine and told me to continue the Osphena. The flares went back to being intermittent. Flash forward to this past July – I had a major flare that lasted days. Doctor did another cystoscopy – “pissed off” bladder. I was so depressed and fatigued from the constant 24/7 pain - we agreed that it was time for biopsies. I had the biopsies on August 9; he told my husband that although he didn’t see signs of cancer, just an extremely inflamed bladder, we needed to wait for the results.
We went back a week later for the biopsy report, and I just knew something wasn’t right before he even walked into the room. Sure enough, the pathology reported one sample as “urothelial carcinoma in situ, negative for invasion, muscularis propia absent.” The second sample was “suspicious for high grade urothelial carcinoma.” The overall “microscopic description” was “sections show urothelial mucosa with a somewhat nodular appearance covered by urothelium with carcinoma in situ with local pagetoid spread. The underlying chronic inflammation may be responsible for the nodultar/polypod appearance on the cystoscopy. Muscular proparis is absent. Negative for invasion.” The doctor said he was sending the samples down to MD Anderson’s for a second opinion and that after that I would need more in depth biopsies. I am not looking forward to this is I experienced a lot of pain after the first biopsy. Doc had prescribed Urogesic Blue and Uribel – the Uribel helped a lot. I have an appointment on September 8 to hear that second opinion. Three weeks to let my mind wander as well as google every single word in the report. I came across this site, and am very thankful.
So…I don’t really have as much information as I would like, no staging or grading. With only two samples taken, surely there could be more areas of carcinoma and maybe those will show its invasive. I don’t know. I did ask him what treatments were available and he said removal of the bladder or BCG treatments but he would refer me down to MD’s. I learned that high grade means aggressive and when I asked how aggressive he said “2 to 4 years.” My heart broke for my husband who was speechless and stunned. I felt like I wanted to shield him from this unexpected diagnoses, like I had let him down or something. This feeling was and still is to some extent overwhelming. Of course, my husband is extremely supportive, but I’m very much aware that even though I will need support, this is a journey that I kind of have to travel on my own. I’m not sure if that makes sense. Anyway, thanks for letting me ramble. I plan on keeping up with this forum and reading some of the older posts. Lisa
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