Mets Day 483 - mulling over Tuesday's CT scan

Since receiving the disturbing scan results on Tuesday, I've spent some time reading a half-dozen articles published this year reporting on the treatment of metastatic bladder cancer.  Unfortunately, there has been almost no progress since I extensively researched this in early 2012.  BC that spreads to distant areas inevitably is fatal, and researchers have been unable to understand the physiology or mechanisms of how and why it spreads.  There is no cure, and treatments are palliative.  Average survival time after distant mets are detected is about 9 months. 

We don't know if that's what I've got yet, however.  On Tuesday, I emailed my DC-based oncologist the following:

"Dr. Aragon-Ching:

I hope all is well with you. Yesterday I had a CT scan at Fox Chase. Comparing it to my prior scan in March 2013, the radiologist detected several slightly enlarged lymph nodes (10.2 mm) by my left clavicle. Dr. Plimack suggested taking a wait and see approach. My next CT at FCCC will be on Oct. 8. I'd like to know sooner rather than later if my BC has spread to distant locations. I'm also leery of the accuracy of CT scans, since my April 12, 2012 CT after chemo showed 3 enlarged nodes (about 1 cm), and the surgical pathology after my May 2, 2012 RC found 12 positive nodes.

I would appreciate your thoughts on the following:

1. How can I find out whether these nodes are mets positive? Would you recommend an immediate PET? Can I have the nodes biopsied now? Who would do the biopsy? I assume it would be CT or ultrasound-guided.

2. Assuming the nodes are positive, what are my treatment options? I'd like to know the gamut, from highly aggressive to conservative, with your views on effectiveness, side effects, and duration. Should we consider chemo with taxenes? I'd also welcome your thoughts on the best clinical trials to consider.

3. What is the typical timing and progression if this is mets? I know there is no cure and my prognosis is grim, but it would be very helpful to my planning if I had a better idea of my path, e.g., expect to have relatively normal functions for a year or so, then 6-12 months of sliding downhill with palliative care.

I'd appreciate your thoughts by email, phone, or an appointment."

She responded with the following:

"Hi Mr. Brothers,

I can have Meghan add you on to my schedule for next week Wednesday if that works for you.  

There are occasions when we see these non-descript lymph nodes especially in not so usual areas (as in the clavicular areas) and while spread to these areas are always possible, isolated findings such as this may not be related to cancer at all.  I think repeating the scan would be reasonable because unfortunately the goal of chemotherapy in true, proven, recurrent/metastatic disease is palliative, rather than curative.  Given there aren't a wide array of chemotherapy regimens available for metastatic bladder cancer, the stance is often let's treat it if and once we need to.

As nerve-wracking this may sound, waiting until this evolves to such that it can be safely biopsied is reasonable (the chances of success of biopsying is limited when the node is small - and 1 cm would still be considered small unless it's clearly palpable).  Obtaining a PET scan is an option, although again its value is limited in 1 cm or less lesions where a lot of times, it would be below limits of detection by PET.

I would not be too hasty in calling it metastatic at this point and agree with Dr. Plimack's assessment of obtaining another scan in a couple of months.  I think we should look at clinical trials should there be unequivocal recurrence/metastatic disease. 

I'd be happy to discuss further with you next week...Dr. Apolo at NIH would also be a good resource person to discuss with.  Do you have the disc for this latest scan? it would be good to bring it with you.

take care,

jba"

I've confirmed the appointment on Wednesday, August 14.  As she suggested, I also reached out to Dr. Apolo, whose entire focus is bladder cancer research.  Her assistant promptly responded, indicating that Dr. Apolo had some thoughts re possible clinical trials and would be happy to discuss the latest knowledge regarding BC treatments, and I have an appointment with her on Monday, August 12.  Both doctors also wanted to see the actual scan data, so I arranged for FCCC to overnight the disks to my house.

I'm grateful for the dedication of these doctors, and hope that there they can bring me some good news.  The best news would be that the nodes are not positive for cancer at all, but that likely will be confirmed only by a biopsy.  It's nearly impossible to biopsy nodes that are only 1 cm in size, so I may have little choice but to wait and see what happens.

Mentally, I'm preparing myself for the confirmation that the cancer has spread.  Maybe it hasn't, and all this will be for naught.  But I've known the odds for a while, and have had a year and a half to prepare myself for the time that I found out that the cancer is spreading.  Maybe this is it.  Maybe not.

I understand that I have no control over whether the cancer spreads or not, and there is no cure that science can offer.  I am not anxious about the things I cannot control.  What I find most interesting is that, to the extent I feel any frustration or anxiety at all, it's at wanting to know whether or not those inflamed nodes are mets positive.  I've mulled why that is the case -- my knowing won't change my prognosis at all -- and concluded that I've spent much of my life acquiring knowledge.  Learning and understanding the status of my cancer progression is no different.  Whether I'm wasting my time trying to find that out is another question.  The most useful thing that could come of that knowledge is a slightly better educated guess of how long I will live.

I don't want to be clutching to life with greedy hands, doing everything possible to buy another day of mortality, no matter how poor the quality of life.  Some of the treatments for distant cancer tumors may buy an extra week or two, but at a horrible cost.  I'm not interested in destroying my life in an effort to prolong it.  On the other hand, if there are treatment options that can keep the mets at bay without turning me into a creature of misery, then I'd like to know about them.  That's what I hope to learn from next week's appointments.