cancer – BaldBrady’s Blog

Out of the Tunnel

March 17, 2020baldbrady4 Comments

It has already been two weeks since the operation to remove a NET from my mesentery. My ordeal began on Monday, March 2 at 5 pm when I checked into Cedars-Sinai Medical Center for an unusual early-evening combined colonoscopy and endoscopy. I remember nothing of these procedures other than waking up about 30 minutes later with a blurry doctor telling me he found of nothing. My innards were perfectly clean as far as he could see, which is pretty amazing considering the abuse I have subjected them to over the years. Since my surgery was scheduled for the next morning at 7 am, they kept me right there in the hospital.

Five tiny incisions, and one slightly larger one. I’m pretty sure I no longer have a belly button.

The next several hours were a blur. I think they must have slipped me something. The last thing I remember was looking at the red digital clock across the room and seeing 7:00 a.m. I awoke amid a misty commotion all around me of doctors and nurses. I squinted through the chaos and saw another red LED clock that read 10:00 PM……Holy shit! 10 PM??? I remember doing the math and thinking I was out 13 hours!!!! Later I figured out it was really 15 hours! I was expecting 2-3 hours. Early the next morning I was told the operation actually took 9 hours, but it took me another 6 hours to come out of the anesthesia.

According to my surgeon, who stopped by the morning after , the surgery took much longer than anticipated due to the positioning of my mesenteric tumor amidst a jungle of critical blood vessels. If he were to nip one of them, I could lose half my bowels. He made the decision to go 100% robotic knowing that this would triple or quadruple the time for the operation, but allow for very precise cuts. As a bonus, they found the primary (e.g. “original”) tumor in my small intestine, which they resected. I have been assured that I won’t miss the 9 cm of removed bowel. The primary tumor was not visible on any of the previous scans, and that they found it is of great significance. There was no longer any mystery about the source of my mesenteric tumor, and by removing the primary tumor, my chances of a quick recurrence should be reduced.

Day 3 in the hospital. I look way better than I feel.

My doctor asked how I was feeling, and I told him I felt like someone punched 6 small to big holes in my belly, rummaged through my entire digestive tract, then yanked out a sizable section out through my belly button. And then Mike Tyson used my belly for a punching bag for 5 minutes. Actually, except for Mike, that is pretty much just what happened.

The next 6 days were a roller coaster of progress and setbacks, including an infection of unknown origin that left me feverish for 2 nights, getting dropped by a rushing X-ray tech (set me back at least 1 day), spasming at my first attempt to drink a clear liquid, and pained shuffles up and down the corridors. But progress finally won out over the setbacks, and they released me almost exactly 1 week after I was admitted.

I made my final visit today to Cedars-Sinai for a last follow up with my surgeon. He gave me the good news that I am officially NED (no evidence of disease)! But Neuroendocrine tumors, even when you’ve had them removed, have a propensity to recur. So I will be on a surveillance program, with scans every 3 months for at least the first year. They are recommending that I can stop the monthly injections that I have been getting to slow down the cancers growth (a big relief to my digestive system). This is all the best news I could have hoped for!

The care I received at Cedars-Sinai was amazing, from the orderlies, nurses, technicians (well, except for that one harried X-ray tech) and the dozen or more doctors that were involved in my care. My main team consisted of my surgeon, a NET oncologist, gastroenterologist, and urologist. All of them have been caring, funny, and exuding professional competence. In spite of this being the most difficult medical journey of my life, I feel like I made the best choice!

I’ve now been staying with close friends just waiting to heal up sufficiently to fly back home to Thailand. In the meantime, the world has imploded with the Covid-19 pandemic and it’s now a race against time through a dark tunnel to get back home before Thailand closes its gates. If I can’t get back in time, I will be officially homeless…

Coming Out of the Closet

February 23, 2020baldbrady11 Comments

banana-295369_1280

Before I come out, just a quick update on my pending NET removal. I’ve met with the surgeon, had my MRI, and had my pre-op testing completed. Forward all engines! My surgeon, Dr. Kosari at Cedars-Sinai Medical Center in LA was very upbeat. He said the surgery should be buying me many years. I may get my gall bladder out as a bonus; this is a preventative measure since the octreotide injections that will likely be a long-term part of my life tend to gum up your gall bladder. Why do we have a gall bladder anyway since we can apparently survive quite nicely without one? Maybe they should just remove it at birth along with your appendix. My surgery is scheduled for 7 am February 28. Stay tuned.

At the risk of TMI, now for the closet. Not the closet you’re all thinking of (sorry to disappoint). It is an embarrassing medical closet. It tuns out I am afflicted with another hard-to-treat disease. If you are at all squeamish about the details of men’s anatomy, now’s the time to close your browser………

I have Peyronie’s disease. You can read all about it here. I’ll give you the one sentence definition: It is a condition whereby scar tissue builds up within your penis causing it to bend at a rather inconveniently acute angle (mine is about 70 degrees) that makes any kind of traditional bedroom fun geometrically impossible (not to mention extremely embarrassing). The cause is thought to be either an acute injury or (as in my case) accumulated unnoticeable minor injuries during intercourse. Woman-on-top is a big risk factor. As my urologist at Cedars-Sinai said, it is perhaps just abnormal wear and tear. Here’s what blows my mind: According to my urologist, 9% of older men have this condition (and 3% of younger men)!! How could nearly 10% of men have this condition and I never heard of it until Dr. Google revealed it to me? More likely than not, one or more readers of this blog also suffers this disease. It’s time to bring this disease out of the closet. Sure, this is an embarrassing ailment, but really is it more embarrassing than hemorrhoids? Worse than jock rot? Worse than ED? Worse than incontinence? We see all of these on tv ads everyday. Hopefully more awareness will lead to more research and more treatments. Hence my coming-out party.

I do understand why this malady is in the closet. It takes a very heavy psychological toll. Some men have been known to become suicidal. To be sure, as ailments go, there are many worse diagnoses. No one has died from Peyronie’s (not counting suicides). For me, the realization that I had a condition that was not immediately treatable (at least in Thailand), and that would prevent sexual activity, was devastating. Being otherwise healthy, but realizing sex was not going to be part of my life, hit hard. With the help of a very understanding partner, I focused on other aspects of life. In the end, I have to come to the realization that overall I’ve been pretty damn lucky, and there was still plenty to live for. But not being able to be intimate with my partner is still quite painful.

It started about 18 month’s ago, so I have known about it for awhile. Unfortunately, in Thailand, the only treatment they know about is radical surgery that sounded to me like partial castration. I even travelled to a so called “specialist” at a top end hospital in Bangkok. Surgical straightening, resulting in drastic shortening, was the only option he offered. Maybe I only imagined the sneer on his face.

This week I found out the good news that there is minimally invasive treatment for Peyronie’s available in the USA. The treatment involves expensive injections of FDA approved, scar dissolving Xiaflex, and physical therapy (kinda sounds like rehabbing a shoulder injury). My urologist said I am an ideal candidate – my condition has reached a “chronic” phase with no pain and no progression and my scar tissue is in the best location for this treatment. So there is hope! The treatment will necessitate anywhere from 1-4 sets of injections (each set done over a 5 day period) with each set of injections spaced 6 weeks apart. This would necessitate returning to LA from 1-4 times this year (I can’t have an injection while rehabbing my cancer surgery). Pending insurance approval, my first injection would be in August.

The question now will be, is it worth it? If I was 35 years old there would be no question, but at my age? The cost of 4 trips to the USA will be substantial. According to the doctor, the success rate is better than 50%, but I still risk spending money for nothing. This is a decision that I will need to make over the next few months. For now, I will concentrate on my upcoming surgery and the aftermath. I will revisit this once I am fully recovered. Who knows, by the end of the year I just might be once again an upstanding man (groan).

Thank you for allowing me to share this story. Just getting it out here is a cathartic. It will be nice not to have hide in the closet, and I’m ready for the inevitable banana jokes!

Operation California

February 15, 2020baldbrady16 Comments

robotic surgery equipment — Meet my surgeon.

I am currently sitting at Black Canyon Coffee at the Chiang Mai airport waiting for my flight back to California. In a few days, I hope to be getting surgery to remove an alien growing on my mesentery. This is a good thing.

It took me 4 scans, 2 biopsies, 8 shots in the ass, and more trips to Bangkok Hospital than I can remember, to get to this point. Finally after ruling out prostate cancer, and getting a diagnostic confirmation from the Cleveland Clinic, it all comes down to this one 2.5×1.5 cm tumor. The consensus is get it out if at all possible.

I talked with two surgeons affiliated with Bangkok Hospital. One was willing to do the traditional slice and dice procedure, and the other one was an expert in laparoscopic (minimally invasive aka. key-hole) surgery. Neither had any experience excising neuroendocrine tumors. I had to wonder if they would even know what one looked like. So I went on the internet. It turns out there are only a handful of facilities in the USA that have a specialization in Neuroendocrine Tumors (NETs). It boiled down to choosing between Dana-Farber Cancer Institute in Boston, The James Cancer Center in Columbus Ohio, City of Hope in Duarte, California, and Cedars-Sinai Medical Center in Los Angeles. One didn’t take my insurance, and one didn’t follow-up after 3-4 emails. In the end, I chose the Carcinoid and Neuroendocrine Tumor Program at Cedars-Sinai. In about 48 hours, I have an appointment with a surgeon who specializes in NET tumors. Not to disparage my doctors in Chiang Mai, all of whom gave me excellent care, but this feels like moving up to the big leagues.

My prospective surgeon, Dr. Kosari, has reviewed my scans and believes the tumor is resectable (Doc speak for “yea, we can cut it out”) and likely can be done minimally invasively using a robotic assist. As the above picture shows, the robot looks a little scary. Sean Connery would agree.

I want to emphasize that my disease has not worsened or progressed. Surgery, if possible, is a good thing (my new mantra). My disease will still be there, will still be incurable (BUT NOT TERMINAL). If successful this will be a step towards my ultimate goal – high life-quality while waiting for something else to kill me. Stay tuned.

Medical Care in Thailand: Observations from a Reluctant Patient.

November 20, 2019November 20, 2019baldbrady6 Comments

images I am now 7 months into my battle with Nueroenocrine cancer. I have had way more contact with the medical community here in Chiang Mai than I ever wished for. I always figured that most people died in a hospital bed, so better to stay away. However, I now feel somewhat qualified to make some observations about health care in Thailand that might prove useful to anyone thinking about retiring or traveling here for medical care.

An Update

But first, a very brief update of my current status. I have now been on monthly injections of Sandostatin LAR for 5 months. These injections are not a cure, but intended to stop or slow the tumor growth, and stop or limit the proliferation of tumors. They do come with some unpleasant, but mostly bearable, digestive side-effects. Suffice it to say that if I had one of the more common side effects then, I would have been a cult hero in my fifth grade class. Last month, I traveled to Bangkok for another Gallium 68 PET scan. The scan showed no growth of my one known tumor, but continued to “light up” my prostate, suggesting something might be there too. Last week, I had a biopsy done on my prostate where my urologist turned it into a pin cushion by removing 24 small cores. Fortunately, I was in Lala Land at the time. Early this week I got the results: nothing at all going on there (except BPH which I have known about for years). Good news!

I will be meeting with my oncologists next week to discuss our next move (surgery or more Sandostatin injections are the two most likely). Unfortunately, the one known tumor is in my mesentery, and is very unlikely to be the primary. Where the hell is my primary? Most likely it is 1. too small to see, 2. gone already due to immune response, or 3. hidden away somewhere, most likely in the curlicues of my small intestine. Neuroendocrine tumors (NETs in the lingo) are sneaky nefarious bastards. Once they have metastasized they are nearly impossible to 100% expunge from your system via surgery or medicine. This will make the decision to cut or not to cut a difficult one….So that’s where I stand at the moment. In the meantime, digestive issues not-with-standing, I feel great and life goes on mostly as normal.

Medicine in Thailand

According to the World Health Organization, Thailand ranks #47 amongst 190 countries in terms of the quality of their healthcare system. For perspective, the U.S. ranks #37. Thailand, except for the tiny states of Brunei and Singapore, ranks number one in south-east Asia. Thailand ranks 65 spots above India that magnet for medical tourism. So by WHO standards, health care is pretty good here. My own experience corroborates this conclusion. But it is only good if you have money (or good insurance).

I receive most of my healthcare at Bangkok Hospital, Chiang Mai (BHCM). Bangkok hospital is a country-wide system of hospitals that was started by a Thai doctor in 1972 as the first private hospital in Thailand. Prasert Prasarttong-Osoth parlayed his medical degree into a $3.2 billion fortune that includes Bangkok Airways and 3 regional airports. BHCM is in my view the best hospital in Chiang Mai. From its welcoming lobby that exudes the ambiance of a 5 star hotel, replete with live music from grand piano, to its immaculately attired english speaking staff, to its state-of-the art equipment and spotlessly clean ORs and examining rooms, anyone will feel confidence in the care they are about to receive. But the quality of that care comes with some significant caveats.

Caveats

In the course of my diagnosis and treatment, I have seen more than a dozen doctors. They all impressed me with their caring attitudes, and general intelligence. However they collectively are the product of an insular system of in-breading. Virtually every doctor in Chiang Mai obtained their medical degree from Chiang Mai University Medical School. Many are listed as faculty members there in addition to their hospital posts. Thai culture’s pronounced stratification, makes questioning one’s supervisors/seniors/elders difficulty at best. This just has to stifle innovation and the adaptation of new or alternative treatments.

I normally meet with two oncologists, one is an elderly woman listed as a professor emeritus at Chiang Mai medical school, the other is a youngish male with an MD degree from there. When I meet with them, she does 95% of the talking, while he mostly stares at his computer. She will suggest something, and he will do his best imitation of a MLB bobblehead doll. On the rare occasion when I meet with him alone, he becomes talkative, and full of ideas and intelligence. I would consider asking to be seen by just him, but I am afraid that it would make an irreparable rent in their cultural universe.

Another caveat is the lack of accountability. Malpractice lawsuits are nearly unheard of in Thailand outside of a few high-profile nose-jobs-gone-wrong that splash across the headlines. When a doctor makes even an egregious mistake, about the strongest reaction is “oops”. Doctor’s are looked up to in Thailand to a much greater extent than are western doctors. Thai patients seldom question their care, and confidently swallow unmarked pills given to them in completely unlabelled baggies with instructions of when and how many to take. There is a clear advantage for patients if doctors have a paranoid fear of being sued. I cannot say how much this accountability issue effects health care, but it will weigh heavily on me if I have to decide on invasive surgery.

The bottom line for now is that my health care has, in my view, been very good. My doctors’ decisions have been verified to the extent possible by Dr. Google and his myriad colleagues. I also received a “virtual” second opinion from an oncologist at the Cleveland Clinic, who, after reviewing all my records, scans, and even my original tissue biopsy samples, concluded that the care I have been receiving is spot on. But my disease is uncommon, complicated, and varies from case to case. Experience here is lacking so I may have to consider returning at some point in the future for evaluation at one of the handful of “NET Centers” in the USA.

A New Battle

July 9, 2019November 20, 2019baldbrady10 Comments

I intend this blog to be a recounting of my adventures in retirement, and random observations about my universe that others might find interesting. I don’t want it to become a recounting of my medical travails – I get enough of that sitting around beers at O’Malley’s Irish pub with my like-wise retired friends. But, I do feel it desirable to share with my blog readers my current condition, since it will probably alter my life significantly going forward. Besides, I am too lazy to recount the story to each and everyone of my friends and acquaintances when the subject inevitably arises – so hopefully most of them will read this. I will be giving you the Reader’s Digest addition. I am happy to recount the gritty details to anyone interested, but you might have to show up to O’Malley’s for that.

Upon my return from Nepal, having fully recovered from my bout with altitude sickness in Nepal, I awoke up one morning with moderate to severe stomach pain. I endured it for the entire day before giving in and driving myself to the hospital. I spent the late

Well, I had to have a picture….These are what a typical neuroendocrine tumor looks like on a cellular level.

night and early morning hours undergoing a battery of blood tests and scans. A CT scan revealed a soft-tissue mass on my mesentery. In case you didn’t know, the mesentery is the connective tissue that keeps your intestines from falling into a tangled pile around your ass hole. I was given two rounds of morphine, which resolved the pain. A needle biopsy was scheduled, then delayed then scheduled again and finally happened on April 30. The final results took another 2 weeks, but it was confirmed that the tumor was a neuroendocrine tumor, which on the realm of good news/bad news is closer to the good news end.

In order to determine if the cancer has spread, I went to Bangkok and was injected with radioactive gallium 68 and had a fancy PET/CT scan. The injection arrived in a huge lead box, and the hypodermic was shielded by a large lead cylinder. Yikes! The scan showed a possible small tumor in a lymph node near my neck and my prostate lit up on the scan suggesting either a tumor there or prostatitis. This means that the tumor had metastasized.

A bit about this kind of rare tumor. They normally grow very slowly as mine is (good) but metastasize easily (bad). The location of the tumor on my mesentery is almost 100% likely to be a metastatic tumor, not the original tumor. In many cases (like mine), the original tumor is never found. For now, the treatment I have been prescribed is designed to control the growth and spread of the cancer (although there is a 10% chance the treatment will shrink the tumor. If completely removing the cancer by resection is not possible, then there is quite simply no cure, only control. Fortunately, several lines of treatment are now available to control these tumors, and many patients live a long time. So I apparently have incurable but NOT terminal cancer. The goal is to control it so well that something else gets me first.

On July 5, I had my first injection of sandostatin LAR, a synthetic hormone that attaches itself to neuroendocrine tumors and inhibits their tendency to grow and metastasize. These injections are not chemotherapy (chemo only works on fast growing cancer). The side effects are not fun, but nowhere near as bad as having chemo. I will have 2 more injections 28 days apart followed by another radioactive PET scan in Bangkok. I am also in the process of obtaining an online second opinion through the MyConsult program at the Cleveland Clinic.

So that’s where I stand for now. Other then the side-effect of digestive problems, I feel pretty good. As soon as I can wander farther that 50 m from a toilet, I will resume my jogging program – I am even thinking of trying another marathon down the road. So life goes on, but my perspectives are evolving rapidly.