Mets Day 5 - a ray of hope

Today I met with my oncologist, Dr. Aragon-Ching, for more than an hour.  We went over last week's scans in detail.  Most importantly, she said that the CT scan's finding of decay of the spine almost certainly was not related to the cancer, but was just normal arthritis.  We discussed how the earlier CT scan noted that there was nothing remarkable about the bones.  She said that, if it has spread to the bone, there would be evidence of solid tumors, and the fact that the CT scan found none told her that the cancer had not metastasized to the spine.  I gave her copies of all of the scans, and she said that she would read them and have others in her group also read them to be sure. 

Because I'm impatient and didn't want to continue in limbo, I called and spoke with the radiologist who read the CT scan and prepared the report.  She told me that both the December 2011 and April 2012 CT scans showed degradation in the spine, and that it was in no way connected to my cancer.  I was just getting old, she said.  Being told that I'm getting old and my bones are getting more brittle was never such good news.  This means that I'm probably not going to die this year from metastatic cancer in my spine, which had been weighing heavily on my mind since last Thursday. 

Back to my meeting with my oncologist.  She said that she was disappointed that the CT showed that there was metastases in three lymph nodes that were near the right side of the bladder where the largest tumor was located.  She said that this told her that my type of cancer was chemo-resistant, and that further chemotherapy using the same GemCis regimen was unlikely to stop or reverse the disease.  She suggested that it was possible that the chemo may have slowed the progression, but that we'd never know for sure.

She said that the fact that the lymph nodes were still relatively small suggested to her that the metastases was still early, and that there was still hope that the cancer was localized, and not systemic.  She said that, in some patients, bladder cancer that had nodal involvement can stay in the immediate area.  In that case, the best thing to do is stick with the original treatment plan:  radical cystectomy and lymphodectomy, and hope that all of the parts of the body that had cancer have been surgically removed.  She said that Dr. Schoenberg was best suited to make that decision, and strongly recommended that we proceed with the cystoscopy on Thursday.

Dr. Aragon-Ching said that she did not recommend any more chemo right now.  She said that I had been given the best first line chemo treatment, and the fact that the cancer did not respond told her that, at this point, more chemo would be ineffective.  She also said that there was no consensus on second line chemo for bladder cancer (unlike many other cancers, such as breast cancer, that have more than a dozen proven chemo options).

The big unanswered question is whether the metastases are local or systemic.  If it stays local, and the surgeon can get it all, then my prognosis is very good.  But if the cancer is throughout my vascular system, she said, then it is just a question of time before it would present itself elsewhere.  She said that there was no way to know that one way or the other before it actually happens and shows up on a scan.  There are no tests or scans that can tell in advance whether my cancer is throughout my system and getting ready to develop distant tumors elsewhere.  You just have to wait and see.  In response to my question of how often bladder cancer with nodal involvement becomes systemic, she said that it was relatively common.  She didn't want to put a percentage on it, but I recall reading that it's greater than 50%. 

Given the high odds that it is systemic, she said that the question of whether to proceed with the RC was a patient-specific question.  She said that, if I was in my 70's, she would probably not recommend an RC.  But since I am only 49, she'd recommend going forward, even though it's a difficult and complicated surgery with a long recovery time, and even thought there is a high chance that the cancer may recur in a distant location. 

She said that, if I elected to go forward with the RC, I would be closely monitored for recurrence.  Until and unless there was any evidence that the cancer had spread, she would not recommend any additional chemo.  If there was recurrence, then additional chemo and radiation would be temporary treatments, but not cures.  The only cure at this point to to go for the RC and hope that gets all of the cancer. 

So, while the news is still staggering, it's not an immediate death sentence.  My odds of 5 year survival have dropped to around 50%, but at this point I'll take the coin toss over cancer of the spine.

It's amazing how a change of perspective can make all the difference.  If someone told me a month ago that my odds had dropped from 85/15 to 50/50, I'd be rather upset.  But going from 1/99 to 50/50 makes my day.