It’s Thursday, 14 days after The News.
I woke up at 7:15 this morning. For no good reason. I wonder where the closest Urgent Care Facility For Nocturnal Beings is. I’ll need to pay a visit soon. I’m also starting to develop a tan from all this sun exposure. My Apple Watch is even leaving a tan line. OMG. This is getting serious!
The Medical Oncologist
The PAMF Palo Alto facility is a confusing maze of corridors. I’ve always gotten lost trying to go from my annual exams to the lab, and had a similar experience trying to find medical oncology. I ended up at a dead end corridor at one point and had to backtrack my steps until I found the wrong turn. I wonder if this is some sort of test – if you make it to your appointment they check a box indicating “the rat found the cheese.”
JT was originally thinking of joining in person, but she had a tight schedule with her real work this morning so I suggested I conference her in. It turned out that medical oncology is in the basement of the facility, and I was watching as my cell reception flickered between no service and one bar. I texted JT that I’d try FaceTime.
Shortly after I checked in a nurse came to get me and led me to an exam room. Before leaving she said that the doctor had just started with a patient so it might be a while. The appointment time came and went. Twenty minutes and still waiting. JT had earlier mentioned that you don’t do anything at hospitals other than wait. Thirty minutes. Forty minutes. A knock on the door and: enter the medical oncologist.
I’m struck by her warm smile and high energy. She seems quite personable like all the other PAMF specialists I’ve encountered. A good sign. I ask if its ok for JT to join in. She says of course! Though we’re in the basement so there might be some difficulty with calls. I start FaceTime and…connecting…connecting…dropped. Hmm. Try again. Same thing. Incoming FaceTime. Try to pick it up and…dropped. The oncologist says we can find another room with better cell reception and I tell her let me try one last time. Connecting…connecting…JT! I introduce JT to the oncologist, who seems thrilled that I have someone like her accompanying me to the appointment.
We propped JT (or rather my phone) on a desk organizer, which worked great for a few seconds until she slid down. Try #2 and she’s staying upright. Now JT sit up straight for the next hour! [ note to self: get iPhone case with stand… ]
The oncologist started off by asking me to recap what I knew. I told her I’ve read through the patient binder and test results, but I’ve avoided researching on the internet. She said that I’m the one sane person in the world, and agrees that the internet is full of sensationalized stories. She imparted that “dog bites man” never makes the news, but “man bites dog” inevitably does! I then mentioned that we had met with the surgeon on Monday and he had also gone over the CT scan and EUS and talked a bit about the chemo-radiation/surgery/chemo regimen. She said she was so glad to have that surgeon, who specializes in rectal surgeries, on board. Previously they’d have to refer people out for select surgeries, but now he’s part of the team and they can all collaborate. Knowing what a difference a well-functioning team makes in the professional world, I was glad to hear this.
She started asking me if I had had any prior symptoms. I relayed what I had told the surgeon – in March or so I had one instance of bloody stool but didn’t think much of it since I had hemorrhoids and it resolved after a day or so. I had felt fatigued, a little short of breath, and a little light headed around that time too but chalked it up to a recurrence of the mystery ailment that’d hit me every four or five years. I also mentioned I thought it might have been a mild case of COVID – everyone worries they’re getting COVID the moment they start to feel ill these days.
Weight loss? Yes, ever since the colonoscopy. And all those days of fasting in preparation for that and the EUS. I’m actually down by around seven pounds since my physical in May (I don’t weigh myself regularly so the only things I have to compare are what’s in my chart. I know you lose a lot of fluids with the bowel prep but wonder if it has an impact on the gut microbiome and nutrition absorption as well. For now I’m ok with my weight and feel fine, and my BMI is in range. Hmm, according to my chart I weighed160 lbs. back in 2006. Definitely on the chunky side!)
She then went on to say that I’m stage 2A, which gave JT and I a pause. The surgeon had characterized the cancer in the TNM system as T3 (tumor size 3). Based on the EUS there was no evident metastases to the lymph nodes, so N0. And if you ignore the liver hypodensities then there was no evidence of distant metastases, so there’s a provisional M0. The oncologist said that yes, TNM T3-N0-M0 equates to stage 2A on another scale (the less detailed but more common one when people talk about “stage 1” or “stage 4”). She indicated that stage 2A is still on the early side and it was good we were able to catch it at that stage.
She started discussing a protocol with systemic chemo coming first, following by chemo-rad, then surgery. (She later referred to this as total therapy, and it’s also known as total neoadjuvant therapy.) This was yet another twist on the ordering described by the surgeon. His ordering didn’t have systemic chemo before chemo-rad. JT and I asked about the efficacy of the ordering, and, echoing what the surgeon said, the oncologist said that the classical ordering is neoadjuvant radiation then surgery then chemo but these days they’re changing the neoadjuvant treatment to include the systemic chemo. They’ve found no difference in outcome. I asked if, with surgery coming last, was there any concern that lingering cancer cells not excised during surgery might remain? She indicated that it shouldn’t be a concern and if that happened it would mean that the cancer didn’t respond to the neoadjuvant treatments. I suppose the tumor is excised with sufficient margin. And I’m also guessing that rectal tumors don’t have tendrils like peripheral nerve sheath tumors, which need to be excised with wide margins and followed up with chemo/radiation. (I thank Caper the cancer-magnet rat terrier for my education in canine oncology.) Mostly talking to myself I said – so it sounds like we do chemo/chemo-rad first and that keeps the tumor in check now and kills off any metastases that may be too small to show up on scans, and then surgery removes the mass. The oncologist said, “exactly”. It sounds plausible to me 🙂.
She described the chemo drugs – 5-FU and Oxaliplatin. If I got it right the Oxaliplatin would be administered when I came in for an infusion and the 5-FU would be administered over a 48 hour period by a pump I’d wear. She said they used to keep people in clinic for two days but now since they have it pump-administered there’s no need to keep people. I’ll just come back periodically (every two weeks it sounds like) for a refill and off I’ll go again. This would go on for four months. I’d also have a port installed to facilitate the chemo.
The chemo-radiation would last six weeks and I’d take Xeloda along with it. We didn’t talk much about that in detail and I expect a more detailed discussion when meeting the radiologist. JT had earlier indicated she wasn’t as concerned about the radiation therapy – I guess there’s not a lot of variation to it.
From a side-effects standpoint the oncologist said that the drugs are usually well-tolerated and some individuals continue working through treatment. She said my hair wouldn’t fall out or anything like that. I told her I was a bit disappointed. I’ve had to cut my hair for the past year and a half since COVID shut down Supercuts. I was really looking forward to not having to cut it. Or at least having a good excuse why I’m bald. (I’m sporting a particularly bad cut now – handling coarse, thick hair is rather difficult. It has a tendency to want to imitate a porcupine.) She just chuckled.
I mentioned that the surgeon had stated that after treatment I would be “cured”. What exactly does that mean? She said that with all cancers there is always the possibility of recurrence. With the treatment regimens for rectal cancer, however, that’s only 10%. The expectation is that tests will come back clean for five years, during which I’ll be considered in remission and after which I’ll be considered cured. For once I hope I’m not taking the path less traveled.
We got around to talking about the hypodense foci found in my liver. She indicated she thought they might be hemangiomas I was born with or maybe cysts. But she did want to get to the bottom of them. The MRI scheduled for Monday would be a good start, but she also wanted to do a PET scan. That way they could look at glucose absorption by the hypodense areas. If they were taking up glucose then they’d merit a further look. The PET scan would require authorization but she was confident she could get that. At some point during the meeting – I can’t remember if it was at this point or earlier – she mentioned that if there were liver metastases that they would remove them during surgery. I’m sure doctors are trained to not panic their patients, but she made it sound almost routine. I was reassured by her desire to definitely learn what the liver hypodensities were, however, since they’d been on my mind. I mentioned to her that I wanted to make sure I didn’t have any sort of liver dysfunction and she commented, no – you don’t have any liver dysfunction. She glanced a bit at the screen (I assume displaying my chart) and added “your liver is fine.” There was a question of the high bilirubin which is slightly out of range but she didn’t think that was something to be overly concerned with.
Towards the end of the meeting I asked if there were any lifestyle changes or considerations that would be beneficial now or during treatment. She had a somewhat questioning look so I mentioned that I’m on something like an OMAD diet – I have a large meal late in the evening and a slice of toast when I wake (which used to be in the early afternoon, but seems to be around 8 am these days.) I explained this is just how I’ve always eaten and I’m not really trying to be on a keto diet or anything. From her expression I got the impression it might not be the best. What she did say was that during treatment I should get a lot of protein to assist the healing process.
I then asked if I could eat at McDonalds once a week. She smiled and said, “Yes! I’ll even write you a prescription for that!” This is my kind of oncologist! She went back to entering notes then quickly turned back and asked if I drink alcohol. Yes, I drink a half glass with dinner a few times a week. She indicated I should cut out alcohol for the duration. Sigh. I turned to JT and said she could clean out my wine cabinet. There were several bottles there that had been acquired on outings with the (now ex-) TiVo Wine Group, and they needed to be opened soon before they turned to vinegar. If they haven’t already!
The oncologist indicated that treatment could start in a couple weeks. My case would first go before a “tumor board“, tentatively in a couple weeks. This is a cross-specialist panel where cases are reviewed and the various specialists can weigh in and determine the optimal treatment plan. The PET scan, provided its approved, is one thing that would be needed before that. The oncologist said she’d order the chemo drugs immediately though so they’d be available whenever the go-ahead is given.
At the end of the meeting the oncologist asked if there was anything else. I mentioned that I didn’t think I “clicked” well with my PCP (no professional complaint, just that our interaction wasn’t as good as with all the other specialists I’ve been seeing recently). And since I now have a cancer diagnosis does she have a recommendation for one that might be particularly suited for patients with a cancer history? She mentioned that they were short of doctors accepting new patients, but she would find me one. I hope she can!
This was yet another great meeting with the PAMF team and I left feeling upbeat. And I’m once again glad JT was able to participate in the discussion.