Mets Day 503: Biopsy will be on Sept. 5

Dr. Apolo's nurse just called to advise me that my biopsy at NIH will be on Thursday, September 5, at 8 am.  I need to be there at 7 for lab work and prep.  I'll be under conscious sedation.  It will be a guided core needle biopsy.  The nurse was not sure what type of imaging would be used to guide the needle.  I should be on the way home by noon.  Assuming they can get to the node, I'm not sure how long I'll have to wait for the results, but if it's anything like the PET scan, it will be the following week. 

Mets Day 502: Biopsy on Friday?

Dr. Apolo from NIH called me this afternoon to advise me that she had reviewed my PET scan with Dr. Brad Wood, Chief of NIH's Interventional Radiology Section (bio).  Dr. Wood said he was willing to try to do a biopsy.  He had one slot available this Friday, otherwise, it would be on Tuesday, September 10.  He said it would be a difficult biopsy, and he would need some atypical equipment to do it.  She didn't fill me in on all the details, but I got the impression that this would be different that a regular ultrsound-guided needle biopsy.  Dr. Apolo is now trying to coordinate getting an OR and the proper equipment together for this Friday.  She will let me know.  I said that anytime Friday was fine.  She said she'd get back to me, hopefully tomorrow, to confirm.  

I now realize that I don't know what kind of biopsy that Dr. Wood may be planning.  I had assumed that it would be fine needle aspiration, where a thin needle is guided into the lymph node, or a core needle biopsy, which uses a slightly thicker needle.  Both are minimally outpatient procedures.  The other option is an incisional and excisional biopsy, where the patient is under heavy sedation and more tissue is taken.  It's also usually an outpatient procedure, but it can have a longer recovery time.  

Whatever procedure it is, Dr. Apolo said that confirming the distant mets by biopsy will be important to guiding her in recommending the appropriate clinical trial.  Apparently she intends to have the metastatic lymph node run through NIH's DNA sequencer to do a genetic analysis of the mutations and characteristics of my cancer.  This is cutting edge stuff which no insurance company would pay for, because it's all experimental.  Your tax dollars at work. 

Mets Day 501 - PET scan positive for distant mets

Dr. Apolo called me a little while ago with the results of last Wednesday's PET scan.  She said that the lymph node under my left clavicle that had shown up in my August 6 CT scan was "hot", strongly suggesting that I had a distant metastasis of my cancer.  She couldn't be 100% sure until the node could be biopsied, however.  She already had consulted with one interventional radiologist at NIH, who said that my node was too small and too difficult to access to permit a biopsy at this point.  Dr. Apolo said that she was going to consult with the chief of interventional radiology tomorrow to see if he would be willing to try to do a biopsy.  She said that she would call me tomorrow with an update.

So this is bad news, although it was not unexpected.  After my three consultations in the past couple of weeks, I had come to the conclusion that I probably had distant metastatic activity.  I didn't feel a lot of surprise or shock at the news.  I think Jennifer took it a bit harder.  She's decided to put her master's degree work on hold indefinitely.  

Because Dr. Apolo tacitly acknowledged that this scan could be a false positive, I did a bit of reading about PET scans and the chance that my scan was a false positive.  The May 2007 report of the National Comprehensive Cancer Network (NCCN) on PET and CT scans in detecting cancer is here, and suggests that, although PET scans are very good at detecting small amounts of distant metastatic activity, there is about a 10% risk of a false positive.  The NCCN report explained that PET scans are very good at detecting metabolic activity where it does not belong. Cancer cells often have high metabolic activity since they are growing more rapidly than they should.  The patient is injected with a sugar molecule containing radioactive Fluorine called 18-Fluorodeoxyglucose or 18-FDG. A PET scan can see cells that are consuming that sugar for energy. The PET scan detects where the radiation is accumulated in the body, and the radiologist looks for abnormal metabolic activity (such as lymph nodes) in places where it does not belong.  But sometimes - either due to some weird activity in the body, or an interpretive mistake, a false positive reading can be made.

This December 2011 article discusses causes and imaging features of false positives and false negatives on 18-FDG PET and CT scans in oncologic imaging. It discusses various reasons why there might be false readings, none of which seem to be present in my case.  (This 2010 post on Livestrong.com also discusses possible reasons for a false positive PET scan, none of which appear to be applicable to me.)  The 2011 article says that false positives can be minimized if a PET scan and a CT scan both suggest that a lymph node has metastatic activity.  Because I have already had a CT scan showing an enlarged lymph node in the same location, it seems that the likelihood that both scans were falsely positive is very unlikely.  

Thus, the odds are high that I have distant metastatic activity.  In my blog entry of May 29, 2012, I summarized my meeting that day with Dr. Apolo, in which we discussed distant metastatic cancer at length.  The most relevant points remain equally true today:

• There is no known cure for Stage IV bladder cancer.  Nothing has been clinically shown to be effective as a cure, including any type of chemotherapy, immunutherapy, radiation treatments, diet, or whatever.  Anyone who says otherwise is ignoring the facts.  
• The research today is focused on trying to slow the pace of the cancer.  Even a few months of additional time is considered a success.  Each advance builds on past advances, and is how other cancers have eventually found effective long-term treatments.  
• Historically, 90% of all Stage IV bladder cancer patients die within 5 years of the Stage IV diagnosis.  The 10% who survive do so because, for reasons unknown, the cancer does not develop in a distant location.  
• Virtually every bladder cancer patient who has distant metastases develop will die from it.  The average (mean) duration from diagnosis of the distant metastasis to death is about 12 months.

A December 2011 article says "metastatic urothelial carcinoma portends a very poor long-term prognosis, with 5-year survival at approximately 5%. The overall survival of metastatic bladder cancer has not improved over the last 20 years."  A September 2012 article adds that "the prognosis of patients with metastatic disease is still poor with median survival being approximately 12-14 months . . . . No major advances have been achieved in the recent years in the treatment of urothelial carcinoma of the bladder. . . . Several targeted agents are currently under investigation, but no major breakthroughs have been achieved with these drugs."

So what's in store for me?  This National Cancer Institute fact sheet is a good overview of metastatic cancer.  This comprehensive blcwebcafe.org article details the typical course of metastatic bladder cancer, with the the most likely locations for distant metastatic tumors occurring in the liver, lungs, bones, and brain.  The bone metastases can cause intense pain; the others are not as painful.  Eventually, the organs fail, causing death.  There are targeted experimental treatments to slow the growth of tumors in these distant locations, but the quality of life can be degraded by the treatment.  In the coming months, I'll be grappling with those trade-offs. 

Enough data.  Enough typing.  I'm going to go hug my wife. 

MetsDay 498 - scan results next week

This morning (Friday Aug. 23) I received an email from Dr. Apolo's research nurse advising me that Dr. Apolo was on vacation this week.  NIH policy is that only a doctor can discuss scan results, so I should expect a phone call or appointment next week.  Jennifer and I have received a number of inquiries from family and friends regarding the results -- I intend to post the results the same day I get them. 

We're going to the lake this weekend for a low-key celebration of my 51st birthday.  I wonder if I'll see #52. 

[Monday, Aug. 26: I just realized I didn't push "post" before leaving for the lake.  Oops!]

Mets Day 495: PET scan at NIH tomorow

I'll be getting a PET scan tomorrow at NIH.  Dr. Aragon-Ching initially had scheduled one at GW, but then Dr. Apolo offered to do it at NIH, which means that we don't have to worry about insurance approval.  Plus, Dr. Apolo also had offered to have the biopsy done at NIH, and having the PET there could aid when the time comes for the needle to be probing around my chest.  The scan results likely won't be available the same day, so we'll just have to wait and see what it tells us.  I've already been warned that a negative scan does not mean that there is no metastatic activity, but just that it was not detected by the scan.  So the PET scan won't give any good news, just bad news or no news.

Last weekend Jennifer and I took Kirsten down to Newport News for her move into college.  It has been a long time coming, and I think we all felt relieved to have passed that milestone.  We then went to the lake house -- the first time this year we've been there -- and found thigh-high grass and a somewhat musty house.  To my surprise, the boat started right up, although it idles roughly -- I suspect that the carb might have some goop built up from sitting for so long.  The jet ski and riding mower batteries needed to be charged.  I like going to the lake house, but based on how little we've used it, and the coming darkness, we'll probably sell it next spring.

I have been remarkable unperturbed by the news that my cancer may be metastasizing.  I've had matter-of-fact conversations with each of the kids about it.  Jennifer and I also have had several calm conversations about the likelihood that I could be dead by the end of 2014, and what we should do in the meantime.  We're still working out the details, but we won't be doing anything drastic in the near future.  I'm going to do some more work on the house, play with my soon-to-arrive granddaughter, and enjoy time with my family.  I've already go the wheels turning for updating our estate planning, and Jennifer is showing more interest in learning about our finances.

Last night Spencer and I went to the Redskins preseason opener.  I had found a couple of tickets on Craigslist, and they were in the lower bowl about 10 rows up from the sideline.  We went early, ate some bratwursts, yelled and booed and cheered and stayed to the end.  It was a pleasant evening with my son.

Life goes on, shorter for some, longer for others, but the day-to-day process of living forms a pattern that is hard to disrupt, even in the face of looming mortality.  I have realized how obligations and commitments can govern my time, and too often I have allowed my schedule to usurp my agency.  Even now, when I largely have been released from 25 years of practicing law, I am surprised both by the durability of my habits, and the patterns that I have built with my family.  I did not fully appreciate how those patterns, both good and bad, were forming over the years, but now can see how they have etched into the stone of my soul.

Mets Day 489 - GW consultation

Today I met with Dr. Aragon-Ching, the oncologist with GW who supervised my chemotherapy last year.  We reviewed the scan results from Fox Chase, and had a candid discussion about my prospects.  She admitted that, with as bad as my post-surgery pathology had been last May, she was surprised that it had taken 15 months for a CT scan to show enlarged lymph nodes.  She also said that, while there was a slim chance that the nodes were not metastatic cancer, I should not be surprised if they were.

Like Drs. Plimack and Apolo, she said that only time would tell if this was metastatic cancer.  She explained that the nodes were under my clavicle, next to the brachial plexus, and adjacent to the top of my lung.  It's a bad place to go probing with a biopsy needle, especially if your target is  only 1 cm across.  I told her that I would like to know sooner rather than later, since I likely would make certain decisions once it was confirmed.  She agreed to schedule a PET scan for next week, even though it is by no means certain that it would add any more information.

She discussed chemotherapy and radiation options, but warned that none of them had been shown to be effective against metastatic bladder cancer.  She said that my bladder cancer was probably platinum-resistant, since my tumors had returned and spread to my lymph nodes during chemotherapy.  I told her that I did not want to destroy my quality of life suffering through treatments that had significant side effects and little likelihood of success.  She agreed with me. She will work with Drs. Plimack and Apolo to make recommendations on the most appropriate course of treatment, once the distant mets are confirmed. 

For now, I'm going to assume that my cancer has metastasized, and structure my life accordingly.  Maybe I'll be surprised later on and feel like I have a new lease on life.  But the realist in me says to not hold my breath and not hope for miracles. 

Mets Day 487 - NIH consultation

Today I met with Dr. Andrea Apolo, a clinical researcher at NIH who specializes in researching different potential therapies for bladder cancer.  (A recent interview that she gave to BCAN is here.)  Coincidentally, this past weekend she was co-chairing BCAN's 2013 Bladder Cancer Think Tank, an invitation-only conference that gathers the best and brightest doctors who are working on finding a cure for bladder cancer.  She specializes in bladder cancer clinical trials, and is probably the single most knowledgeable person in the world about the latest research and potential therapies for metastatic bladder cancer. 

While I was sitting in the NIH waiting room, Dr. Steinberg, my surgeon from Chicago, called to say that he had received my email of last Tuesday, and that he had sought out Drs. Plimack and Apolo at the BCAN Think Tank to discuss my case.  Dr. Steinberg said that, given my history, I was right to be concerned about the CT scan.  He added that the location of the lymph nodes (under the clavicle, adjacent to a bunch of vital arteries and nerves) and the relatively small size of the node (just over 1 cm) would make it virtually impossible to biopsy at this point.  He also said that he agreed with my seeking out Dr. Apolo, and observed that, between Drs. Plimack, Apolo, and Aragon-Ching, I was being followed by some of the best bladder cancer oncologists in the field.

I had brought the disks with my FCCC scans for Dr. Apolo and her team to review.  After a nearly two-hour wait and a long screening by one of the NIH fellows, Dr. Apolo joined us, saying she had spent some time reviewing my scans in detail.  She didn't add anything new about my current status:  the enlarged nodes were worrisome, but they were still relatively small, being just over the threshold of clinical significance.  She confirmed that it would be virtually impossible to biopsy the nodes at this point, saying that even with an ultrasound-guided CT, the node should be at least 1.5 cm to have a decent chance of success, and 2 cm was more likely to be have a successful biopsy.  Of course, she said that if the next CT scan showed the node was 2 cm, then it was 99% certain to be metastatic anyway.

I told her that I'd like to know sooner rather than later.  Dr. Apolo bluntly replied that knowing earlier wouldn't make any difference in either treatment or the odds of survival:  distant metastatic bladder cancer is fatal.  I thought, but did not say, that knowing earlier would remove the uncertainty that I now feel.  More on that later.

Dr. Apolo said that, until the distant mets was confirmed, it was too early to discuss clinical trials.  She remembered that my BC was HER2 positive, and said that she knew of a couple of experimental therapies that in some cases had slowed the progression of HER2 positive BC.  She also said that, if NIH did the biopsy, they would do a genetic sequence of my cancer.  That would enable them to better identify both the mutations that had led to my cancer, and the most appropriate clinical trials to see if anything could slow the progression of the disease.  (Note to self: ask Dr. Aragon-Ching if GW can sequence my tumors that were removed in my TURBT's.)

Dr. Apolo recommended that I have a follow up CT scan in three months.  I told her that FCCC already had scheduled a follow-up for October, and she thought that was aggressive, but if FCCC would do it that early, then that was great.  She said that she would follow-up with Dr. Plimack as well as Dr. Aragon-Ching of GW, who I will see on Wednesday. 

After leaving, I thought more about why I wanted to know whether or not I now had distant mets.  I understand that whether or not I know if the nodes are positive will not extend my life.  I eventually decided that the reason why I would want to know now, rather than two months from now, is that I likely would increase the urgency of my life if I knew with certainty that my final days were approaching.  I would probably retire from my law firm; get moving on updating my will and trusts; sift through and assemble my journals, emails, and other writings that document large chunks of my life; sell our vacation house; try to get complete the renovations on our primary home so Jennifer would not have to deal with it; dispose of some of the detritus of life; visit extended family; prepare my immediate family for life without me; and better prepare myself for eternity.  Other than that, I wouldn't change a thing. 

After working through this mental list, I asked myself why I'm not doing those things now.  (In all fairness, I have been doing some of those things.)  The answer, I think, is a combination of exhaustion, inertia, and not wanting to deal with it.  Maybe this ambiguous scan is the kick in the butt I've needed to once again refocus my like on what really matters. 

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. 

Mets Day 480 - uncertain scan results

Today Jennifer and I went to Fox Chase for yet another round of blood work and CT scan.    One of the reasons I like FCCC is that you don't have to wait several days for the scan results.  I had the scan at noon, and by 2 Dr. Plimack had the written report.

The results of today's scan was not encouraging.  Comparing my CT to the prior studies, the radiologist detected several enlarged lymph nodes in my chest: "Several left superclavicular lymph nodes have slightly enlarged since the prior study, the clinical significance of which is uncertain."   Dr. Plimack said that the size of the node that she measurd was just over 1 cm (10.2 mm), which is the threshold size for clinical significance.

Dr.  Plimack was not willing to draw any conclusions from these data.  She said that it could be one of three things: 1) the bladder cancer has metastasized to other lymph nodes, where it is growing; 2) the nodes have swollen for a reason unrelated to cancer, such as an infection, or irritation, or some other reason; or 3) the nodes are not swollen at all, but it just looks that way because of how the scan sliced through it.  She added that it was very rare for BC to spread first to nodes above the diaphragm - she could think of only one instance where that had happened. I reminded her that, after my chemo, the CT scan detected three nodes of increased size of just around 1 cm in size, and it turned out that there were 12 positive nodes. A CT scan is a blunt and imprecise test, in my experience. 

The radiologist report continued, "Alternatives for management include short term interval CT follow up or PET CT. If either of these studies is suspicious, ultrasound-guided tissue sampling may be considered."  Dr. Plimack endorsed these recommendations, telling me to wait and see.  She said that a PET scan right now would not necessarily confirm metastatic activity, but might just reflect an enlarged node.  She also said that trying to biopsy a node that was just over 1 cm was very difficult.  She advised me to wait and have another scan in a couple of months.

I asked her about what-ifs, such as if my enlarged nodes turned out to be metastatic activity.  She said that we'd have a long conversation at that time, and encouraged me to not worry about it for now.  Easy for her to say. I pressed her, and she replied that there was no cure for metastatic cancer.  I knew that, but having her repeat it as a matter of fact drove home the point. She said that my options included investigating palliative treatments, and looking for the best clinical trial.  I already knew that the average survival time for a Stave IV bladder cancer patient with distant mets was about a year. And few clinical trials are effective.

Dr.  Plimack restated her advice to continue living and not obsessing about whether my cancer was spreading.  Because there is no cure, it really doesn't matter whether it's confirmed or not.  It does remind me of how tenuous life can be, and how we have no idea how long our mortality will be.  On the one hand, I'd like to know the details of my disease and the treatment options.  On the other hand, it's not going to make a whole lot of difference because there's not a whole lot anyone can do about it.

I'm still pondering this dichotomy, and how I incorporate this news into my life.  Do I live differently, and if so, how?  One indicator of how I'm processing this news is that, for lunch, I had a big Philly cheesesteak with fries, and for dinner, I had Five Guys.  Maybe I'm determined to not die from cancer, but of clogged arteries instead.




.

Mets Day 479 - Scan tomorrow

Tomorrow I have another scan at Fox Chase Cancer Center. In advance of my scan and conference with Dr. Plimack, I've been reading up on the latest research regarding bladder cancer.  One medical journal article that I reviewed had the catchy title, "Pancreatic secretory trypsin inhibitor causes autocrine-mediated migration and invasion in bladder cancer and phosphorylates in EGF receptor, Akt2 and Akt3, and ERK1 and ERK2".  A link to the abstract is at here.  When I first saw a news article about this research, I hoped that it might be good news on whether my plasma could be measured for the PTSI marker. Being able to quantify that might give me some indication of the degree of ongoing increased risk that I have for the formation of solid (and inevitably fatal) secondary tumors.  Bur after reading the article (and I don't claim to have understood much of it), I don't think that it will help me at all.  The possible link between the PTSI markers and BC mets is not well-established, and there is no therapeutic treatment available even if there was a demostrable cause and effect. I'll still ask Dr. Plimack about it, but this research doesn't change the fact that there is no proven treatment for metastatic BC.