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Non invasive bladder cancer..what now?

2 years 3 weeks ago #52352 by Joanne2
Jack,
I agree with being aggressive too. It makes me anxious to wait and see. All of this has helped me already. I go in today for the BCG. I feel better prepared and will be asking more questions
Thank you!
Joanne

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2 years 3 weeks ago #52351 by Jack R
Joanne,

It is a given that different doctors will address conditions differently. As for BCG usage, there has been quite a range of different treatment schedules and plans applied to and reported by people posting on this site. Some doctors take a more aggressive approach than others.

I like the aggressive approach, but then again I have both low and high grade cancer. My first urologist was a wait-and-see guy. I replaced him.

Personal medical history is often a factor a doctor considers when suggesting a course of action, as well as the individual patient's preferences.

BCG does have side effects that can vary by individual from mild to debilitating. The doctor and patient need to work through any problems and balance the benefits and side effects. (I am hit hard by BCG, but I have no intention of discontinuing treatment)

I offer a link to another article, by the highly respected Dr Lamm on BCG use and outcomes. It is a 2006 article and includes Ta and T1 results out to 6 years. Of course, statistics do not apply to any one individual.

http://www.europeanurology.com/article/S1569-9056(06)00142-4/fulltext/improving-patient-outcomes-optimal-bcg-treatment-regimen-to-prevent-progression-in-superficial-bladder-cancer

I think you have made a good decision. Remember though, I like aggressive. BCG is intended to activate up your immune system to help clear/control any cancer cells. To me that is a good thing. The other option is to wait and see IF there is more visible cancer to treat at your regular checkups. Tough choice to make. The best thing is that you know about the cancer and it is being followed along - now you have choices.

Best
Jack

PS I have researched the medical literature heavily since my diagnosis. I have chosen my path based on my preferences and the best medical evidence I can find. Everyone is different and may have better options.

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis T0
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2 years 3 weeks ago #52349 by Joanne2
Thank you Sara Ann and Jack. My doctor said he wanted to be aggressive with the treatment especially due to my age, which I agreed with. He also told me how important it was to come back for the follow cystograms and I will definitely be doing that. I'm hoping I made the right decision. It is very anxiety producing as you all know way to well. I am praying for you all. Tomorrow is Monday here's to another treatment.

Thank you all again,
Joanne

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2 years 3 weeks ago #52344 by sara.anne
Your path report says that the cancer was low grade (a bit of a surprise, see below). The lower layers of the bladder lining ( Lamina propria) were present. This indicates that most likely the cancer has not spread into the lower layers ...if the lamina propria was not present in the sample, the pathologist couldn't tell if cancer was there or not. There was no muscle tissue in the sample, so the pathologist couldn't tell if the cancer had gone into the muscle, but since it would have to be in the lamina propria first, that is probably not a problem.

I am a little surprised that the urolgist has prescribed BCG treatments. This isn't often done for low grade papillary cancer; BCG is usually saved in case it becomes high grade or if it returns again. However, different doctors do things their own way.

The usual protocol for early low grade bladder cancer is to schedule the patient for cystoscopy exams every three months for about two years, then every six months until five years have passed, and then
every year forever. These exams are very important, since bladder cancer has a nasty little habit of coming back and you want any recurrances to be found as soon as possible.

Hope this helps answer some of your questions?

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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2 years 3 weeks ago #52343 by Jack R
Joanne,
You have now found others who are living with or caring for those of us with bladder cancer. The initial diagnosis of CANCER hit many of us hard - it sure did me - an left us lots of questions and few if any answers.

This is a good place to read of others experiences or ask questions - all subjects are fair game. You won't get medical advice, but can learn of the path others have been offered or taken. I have found the site to be extremely valuable.

Unlike the serious oncologists, the urology community, in general, 'appears' to look at superficial bladder cancer as a routine condition that requires neither swift action nor providing the patient with much information beyond the immediate treatment plan. To that end, I offer the following trusted website that is FULL of general information about bladder cancer - a good starting point for learning more.

http://www.cancer.gov/types/bladder

If it had to be cancer, as I have come to learn, superficial bladder cancer, diagnosed early, is a good choice. It is highly treatable, treatment has minimal side effects and there is the option to remove the bladder if the cancer advances. A real plus it that treatment such as BCG can take place through an existing "opening" instead of through a surgical incision.

It sounds like you are right where many of us were as we started on this journey. I hope you will find this site as helpful as I have.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis T0
The following user(s) said Thank You: dani, Joanne2

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2 years 3 weeks ago #52342 by Joanne2
This is what my pathology report says...
A1 non-invasive low grade papillary urothelial carcinoma. Lamina proprietary present. Deep muscle not present in material submitted.

Can you put this in layman's terms? My urologist explained it but I was overwhelmed at the time. It's very helpful to have your explanations. This is the most I've understood so far.
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