Non invasive bladder cancer..what now?

4 years 5 months ago #52338 by Joanne2
Hi everyone,
I am a 45 year old woman. I was diagnosed September 28, 2016. I have gone through 2 treatments of BCG. I don't know anyone that has this. It doesn't rise to the level of oncology but I still have cancer! I'm active and I love to cycle. I rode 20 miles today and I am beat! My treatments are on Monday. Is this a side effect or am I out of shape? I'm scared...not sure how to deal with the everyday reality of the diagnosis. I feel very blessed it was found early though. I guess I'm looking for someone who understands, doesn't think I'm unjustifiablely complaining..which is how I feel. I need others like me...
Thoughts? Joanne

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4 years 5 months ago #52339 by sara.anne
Replied by sara.anne on topic Non invasive bladder cancer..what now?
Hi Joanne, and welcome to our "very exclusive" club! Sorry that you have to join us.

A few words which I hope may put things into perspective and maybe help a bit. I was stunned by your comment that your cancer "doesn't rise to the level of oncology!" I would put it another way...oncology has yet to offer much to non-invasive bladder cancer! The bladder is a very self-contained organ, and made that way to confine waste materials away from the rest of the body. Most therapeutic agents would not effectively penetrate the bladder lining at doses that would not be very toxic to the rest of the body. This is why we are so grateful to have BCG.

I assume that your diagnosis was either "high grade" papillary carcinoma or CIS? Otherwise, I doubt that BCG would have been prescribed this soon. "High grade" (and CIS is also high grade) means that the cells are relatively rapidly dividing and have the potential to spread outside the bladder (which would require removal of the bladder and/or chemotherapy.) BCG is very effective in many cases at preventing this. It is a form of immunotherapy; it is supposed to kick up the immune system, particularly in the bladder lining, to fight off the cancer.

The side effects of BCG, of which fatigue is the first and most common, indicate that the BCG IS WORKING! You are doing great...I couldn't have cycled 20 miles during my treatments for any reason (of course, I probably couldn't have cycled 20 miles anyway, but you get the idea.) The side effects, besides fatigue, often include cramping, bleeding, burning, urgency. However, these are bearable, and they do go away and they are much less than patients who do require chemotherapy experience.

As for not knowing anyone with bladder cancer, you might be surprised. Here are some statistics (probably a bit out of date) from our Home Page
bladdercancersupport.org/bladder-cancer-help/bladder-cancer-facts/statistics
Bladder cancer is the 8th most common cancer in women!

In addition to fatigue, I would imagine that you are also a bit (a bit?) depressed. That is also natural when facing something like this. However, you will do GREAT. I was where you are over 8 years ago, diagnosed with both papillary and CIS, spent two years in BCG treatments, and have been cancer-free ever since!!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 5 months ago #52340 by Joanne2
Replied by Joanne2 on topic Non invasive bladder cancer..what now?
Hi Sarah Anne,
Well as I sit here tearing up as I read this...I guess there is a bit of depression. My doctor said that it did not rise to oncology, which I found odd. I'm not sure about the rest. I am going to ask those questions on Monday. I feel ignorant about this honestly. Your response was perfect. I feel blessed to have found this site...I really need it.
Joanne
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4 years 5 months ago #52341 by sara.anne
Replied by sara.anne on topic Non invasive bladder cancer..what now?
Believe me, Joanne, all of us have been where you are.

Do you know your exact diagnosis? You should get a copy of the pathology report if you don't already have one. That way, any advice you get from us or anywhere else will be based on a little more knowledge. IF your bladder cancer, serious as it is (and it is NOT trivial, believe me) had "risen to the level of oncology" you would be in bad shape, indeed. (Guess you can figure that this statement really got to me!)

Another thing to remember about the BCG treatments, which you seem to be handling well so far, is that should the side effects truly become too much the dose can be significantly reduced. I was at 1/3 the original dose by the time I finished the induction and then the maintenance series.

Do feel free to ask any questions you might have....

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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4 years 5 months ago #52342 by Joanne2
Replied by Joanne2 on topic Non invasive bladder cancer..what now?
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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4 years 5 months ago #52343 by Jack R
Replied by Jack R on topic Non invasive bladder cancer..what now?
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.

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

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis 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# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
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