Questions and research

I'm trying to digest so much information.  I've created a binder that contains notes, medical records, test results, abstracts and entire articles, and more.  Right now, I'm focusing on the known unknowns.  As I see it, here's what I don't know:

Is my cancer T2a or T2b, or maybe even T3?
Does the lymphovascular invasion mean that the cancer has traveled outside of the bladder at all?
What is the best course of treatment?
Can the bladder be saved?  Should it?
What is the best type of follow-up therapy?
What are my odds? 

So, that's where I'm at now. Here's the current plan:

After the swelling goes down (4-6 weeks), I will have another TURBT which will accomplish two things:
1.  Microscopic removal of additional muscle to ensure that it is cancer-free.  This will provide the  definitive staging.  The staging determines the treatment.  
2.  Removal of the Tis nodules elsewhere in the bladder

After the second TURBT, and the definitive staging, the docs can put together a definitive plan of treatment.  The enclosed just-published article discusses the options that I will be confronting once there is a definitive staging.  It's from Surgical Oncology titled "Selective Organ Preservation in Muscle Invasive Bladder Cancer:  Review of the Literature."  It was very helpful in getting me up to speed on the lings and options. 

In all likelihood, there will be 3 primary options:

1.  Surgery to remove the entire bladder, and maybe the surrounding lymph nodes.  This is the traditional standard of care for MIBC (muscle-invasive bladder cancer).  Cut it all out so the patient is cancer-free, and the patient can deal with the diminished quality of life without a bladder.  I've read quite a bit about those options, and none of them sound particularly fun, but I might end up in that position, and if so I'll learn to deal with it. 

2.  Partial resection of the bladder, cutting away just the portion that was infected by the cancer and where the muscle wall was weakened.  This preserves the bladder and normal urinary function.  It used to be more common but fell out of favor because there was too much recurrence.  Is making a slow comeback with some doctors.  The article talks about relative successes with this option. 

3.  Preserving the bladder.  This may be an option if the second TURBT shows no remaining cancer.  There are a host of factors to consider, many of which are mentioned in the article.  I have some of the risk factors that may counsel against this option. 

Regardless of which of these three options are pursued, there will be considerable follow-up therapy, likely consisting of some combination of chemotherapy and radiation therapy.  There are many different choices there, too.  The important thing is to have a multi-disciplinary team approach, involving the urologist, surgeon, urological oncologist and radiation oncologist. 

I intend to seek second, and possibly third, opinions.  In addition to the core team at GW, I'll probably go to Johns Hopkins, then go from there. 

It's clear to me that this will be a multi-year battle.  The article discusses success rates (cancer free after 5 and 10 years) and mortality rates, but because they combine all types of MIBC's (including the inevitably fatal T4's), the rates are not as applicable to my T2. 

Jennifer and I and the kids are taking this one day at a time.  We accept that we cannot control this, but can control our reactions and our treatment options.  We very much appreciate your expressions of support and faith.  Our congregation is going to have a special fast this Sunday.  I appreciate their faith and support.   

I am profoundly grateful to Jennifer for her loving support and her calm acceptance of things that cannot be controlled.  I am grateful to my children for their love and concern.  I am grateful to my extended family, and their love, faith, and prayers.  I am grateful to my church family, and my colleagues at work, for their steadfast support.  I am grateful to have access to high-quality health care.  I am grateful that I am in no pain.  I am grateful for life.