-
Just would like to introduce myself…
I have visited this site in the past but have not joined until today. Brief history, I was diagnosed in December of 2005 with T1 Stage 1 with CIS. Of course my life has not been the same since. Have had several Turbs, went through my initial BCG treatments (6,3,3). Most recently have had INF & BCG (@ 1/100) treatments. My cysto and FISH after the initial 6 treatments were negative. Just had my follow up (after maintenance treatments) cysto (Benign) and waiting for my FISH results. This journey has been incredible. Not sure what to write my first time out. Please be patient with me.
Gracie
-
7 Replies
-
Here is some additional information of CIS Carcinoma in situ and types.
University Hospital, Department of Urology, Boston University, 75 East Newton Street, 02118 Boston, Massachusetts, USA
Summary Carcinoma-in-situ of the bladder is a complex intraurothelial neoplasm. Although histologically confined to the superficial urothelium, the natural history of the lesion is unpredictable. In its most aggressive form, it is a diffuse field change process characterized by unremitting irritative voiding symptoms and is a harbinger of early muscle invasion. On the other hand, histologically identical, but focal CIS may be completely asymptomatic and remain dormant for decades without evidence of invasion or progression.
-
Hello Brewster – I was becoming very symptomatic with the BCG. Gradually started to decrease on the dose but symptoms continued. I had a recurrence after the BCG – and now seem to respond much better to the INF/BCG. Its a mystery. I consulted with Dr. Lamm on the dose of BCG and he suggested the 1/100th. I had almost no reaction with that dose. Not sure if I should stay with the 1/100th or opt to increase it somewhat on my follow up maintenance treatments. Dr. Lamm insists that I am where I should be. I just wish we knew when we could tolerate more.
Have another question – on vitamins. I know of Oncovite – however I have a pretty rich, high nutrient diet. Always cautious of the supplements. Heard of potential liver damage due to the high vitamin A in the supplement. Would love to hear others experiences.
-
Brewster is was Dan…and i don’t know how to do the quote thingy…so here’s what he said..
“FYI, studies have shown that CIS occurs in multiple forms. One form (that is focal) seems to have a progession rate as low as 8% in patients followed over 16 years. Other forms (diffuse or multifocal) that are associated with T1 have much higher rates of recurrence/progression”
-
Hi Gracie and welcome – I’m pretty new here myself and feeling my way around. I also have CIS – diagnosed in May of this year. I have completed the initial 6 BCG treatments and the first maint. round of 3. Cysto due next week so I’m starting to get nervous. I was wondering if you would comment on why they switched you from BCG to BCG + interferon. Usually it’s because the BCG failed or the side effects from BCG got bad. I’m gonna guess it was the side effects since you indicated the BCG dosage is down to 1/100. BTW thank you for mentioning the dosage. To me, tolerance and dosage go hand in hand and maintaining tolerance is almost as important as preventing recurrence. I’m seriously considering switching to BCG + Interferon before I start losing my BCG tolerance. best, brewster
-
Hi Rosie – in your reply to Gracie you asked about the type of CIS. Earlier today, 11/10, I was browsing here and I thought I saw a string of postings on this subject (I think they were in response to a posting by someone named Dan). Anyway, I went back later to read them and they seem to have disappeared. Did I imagine this or ??? – it wouldn’t be the first time I slipped a cog. best, brewster
-
Hi Rosie and nice to meet you. Not sure but will check my path reports. Writing this in a hurry. My goodness, 7 years….of course I realize that our lives are forever changed by this. I am coming up to my 2 year mark. Since it is aggressive – there are the obvious concerns and fears. I continue to try to educate myself the best I can. Have consulted with a few doctors that are noted in this area. There is so much they don’t know! Amazes me. And each one of us is so different yet the same. I guess I have more questions then answers.
Gracie
-
Hello Gracie and welcome to our unique group,
It sounds good that the check ups and cytology and fish are negative. You stated your are stage 1 which means a T1 – Invasion into the Lamina Propia. Did your pathology state if the T1 was a, b or c? Did it state what type CIS like focal, diffuse or multi-focal? You responded well to the treatments. All good signs. You are doing well. Yes, it certainly is an incredible journey Mine has been for 7 years and I am still learning and incredulous at times. Do you have any specific concerns or observations at this time? Rosie
Sign In to reply.
