I blame the coronavirus pandemic. In compliance with our governor’s social distancing order, our retirement resort’s administration building was closed to all but necessary people. I can’t access my favorite computer. This blog update was generated in my smart phone.
The pandemic for sure cramps my style. Whenever I step out of my house, I wear a mask. All of a sudden my ears are carrying several gadgets – eyeglasses, hearing aids, earrings, mask. Shit! I’m a petite senior babe with petite outer ears. The head appliance overload sends my face dangling forward.
Okay…on with the report.
Boniva. After taking Boniva once a month for one year, the bone mass density scan image of my skeleton, compared to those of the last two years, showed stability. My poor aging bones’ osteopenia did not worsen into osteoporosis. By golly, Dr PCP is right. He insists, You did not lose. That means you are winning. Carry on with the Boniva. I don’t argue.
Tagrisso. Tagrisso has been great. I have been on it for 39 months. It has maintained the stability of the sole nodule at the bottom of my left lung, which started my non-small cell lung cancer journey 8 years ago. Onc Dr Smiley put me on 4-month scan, then 8-month, then, early March, after much confusion, as in Dr Smiley posting a glowing CT scan report before I’d had the CT scan, my first 12-month scan finally happened. I have remained asymptomatic – no cough, no fatigue, no loss of appetite, no pain, no lumps. Nothing. Nada. I feel great.
Having had no scans for a whole year, I noticed changes in the process. I had to make 2 trips to the hospital’s spanking new cancer building named after the wealthy couple who donated it. The first trip was the day before scan day to pick up the 2 bottles of chalky raspberry flavored barium drink. I was instructed to drink all but one fourth of the liquid at home. The following day – scan day – I drank the remaining liquid just before scan time. Another change: I was not given the intravenous liquid that gives the warm sensation and the feeling of wanting to go potty. So my body’s horizontal trip through the scanning machine tunnel was all there was to it – very quick and painless.
The CT scan result report in the patient portal started awesome. The innards were unremarkable. No lymph node issues. No metastases anywhere. Stable sole nodule at the bottom of the left lobe. Seen again was the Milky Way – the tons of tiny nodules too numerous to count but all under one centimeter the largest one being 6 mm, which is now 12mm. Clueless, I thought, That would be me, Celia the Gambler double or nothing. And then it hit me. Twelve millimeters! That’s 1.2 centimeters equal to 1/2 inch! If the nodule was solid and had clear margins it would resemble a green grape. At the end of the report, Dr Smiley added a recommendation: SBRT, short for stereotactic body radiation therapy. He wrote he had called Dr so-and-so (Dr SS, a Radiation Oncologist) but no answer. End of Report.
I assumed Dr Smiley would contact me after he got the return call from Dr SS but I did not hear from him again by phone or through the patient portal. Fortunately, I had an appointment with Dr PCP for our semi-annual what’s-wrong-with-Celia session. First thing he said to me was, Have you read your latest report from Dr Smiley? Are you not going to ask for a biopsy before SBRT?
I said, He will call me back.
Dr PCP was adamant. No, you call him. I will write a script for you to follow.
A script? I thanked him although I had my own script in my head. After all I’ve been researching and blogging about cancer treatments for 6 years. I accepted his handwritten script, which I had no intention of following word for word.
As soon as I got home, I sent Dr Smiley a message through the patient portal.
Me: Dr Smiley, I haven’t heard from you. Has Dr SS returned your call? Or can this wait until our next meeting in July? Don’t we need a biopsy?
Within a minute he responded with what seemed like a horrified reaction over my mention of July. Sure got his attention!
Him: NO! This has to be taken care of now, this month, March 2020. No need for a biopsy.
Me: Give me the phone number of Dr SS and I’ll ask for an appointment.
Him: For your information Dr PCP and I have been discussing you, my basis for no biopsy, Dr PCP’s justifications, Dr SS’s two cents, etc.
I did not argue with Dr Smiley. I was saving it for my one on one with Dr SS. After all the radiation oncologist would know more than the cupboard oncologist, who only deals with approved drugs like Tarceva, Afatinib, Tagrisso, etc.
Well! How about that? Suddenly 3 doctors are involved in my 12mm nodule. Why don’t I add a 4th one? And I did!
I contacted my buddy, my Onc’s Onc, the Lord of Lung Cansah in Denver. The last time we talked was 3 -1/2 years ago in Maryland where I was flown to implore the FDA to approve the CO-1686 trial drug, which was eventually orphaned.
Those who have followed this blog from day 1 will remember that my first onc in Albuquerque has cancer. He introduced me to his own onc in Denver for a clinical trial possibility in case Tarceva, the drug I was on at the time, lost its potency against my EGFR cancer mutation. Thus the moniker my Onc’s Onc.
I texted my Onc’s Onc. Within a couple of minutes, he responded! Here’s how the exchange went:
Me: Hello my Onc’s Onc! Just to say Hi and inquire big time. How’ve you been? It appears my run on Tagrisso has hit the skids. I was doing so good the last 3 years that my CA Onc decided to go to once-a-year scan. I had one last week. Everything is fine except one 6mm nodule in the left upper lung (LUL) doubled in size, now 12mm. I remain asymptomatic. Do you know of any post-Tagrisso clinical trials I might qualify for? Thanks, the Diva
Within minutes he replied.
Onc’s Onc: I’d wonder, if only one site is growing, if you can zap with SBRT and stay on drug. YOO (Your Onc’s Onc)
Me: Thank you for your super quick response. Really appreciate it. Just thinking ahead. SBRT was the immediate reaction here, too. Carry on!
Dr SS, the Radiation Oncologist
Dr SS, of Chinese ethnicity, marched into the examination room with the Kung Fu swagger of a warrior who has successfully conquered a battalion of nodules in his young mid-40’s existence.
Dr SS: I read your medical history. You look good!
I liked him instantly. I guess he was expecting to see a despondent wrinkly little old lady in tennis shoes.
Dr SS turned on the computer and showed me the CT scan image of the 12mm nodule in my LUL. Against the black background, the CT exaggerated picture of the nodule resembled a dandelion flower. It was the first time in my over 3 years outside of the university hospital scene that I’d seen a picture of my lungs. The Oncs in the one-man-band cupboard sector are not big on picture sharing.
Dr SS explained the SBRT procedure. Then he asked, Do you have a Pulmonologist? We will need one to prepare you.
Me: Whoa! Whoa! Before we start bombarding this body with radiation, I think we should investigate that nodule. It could be benign, it could be malignant. In the six years that I’ve been blogging, things have come – then mysteriously disappeared – in my lungs and other parts of my body.
Dr SS: We can do a biopsy but I’d suggest something safer: a CT/Pet scan. Have you had it already?
I couldn’t believe what I heard. He should have noticed it during his review of my medical history, which showed no record of a recent Pet scan.
We agreed on the CT/Pet scan as the next course of action.
And so I went through the CT/Pet scan, which can provide more information about the cancer like size and SUV that CT alone or Pet alone can’t do. SUV stands for Standardized Uptake Value, the rate of glucose absorption by the malignant tumor as compared to the rest of the neighboring non-cancer cells. Radiation oncologists look for a nodule of 8mm maximum in size and SUV of 2.5 before they get excited about doing SBRT.
The result: My nodule is 10mm in size and its SUV is 1.4. It’s big enough but its appetite is less than voracious. Dr SS and I decided to go for the SBRT. But first, he had to ask his favorite Pulmonologist to do the honor of giving me a Bronchoscopy – a procedure that involves shoving a small camera through my throat to enable him to examine my passage ways from north to south, take pictures and gather tissue samples if necessary. I’m pretty sure anesthesia would be involved, just like when I had colonoscopy where the small camera went cruising from south to north.
Dr P, the Pulmonologist
Dr P, and his sidekick a female nurse strode into the examination room where I was waiting. They were both wearing masks, like my plus one, BT, and I were.
I could tell Dr P is a tall handsome devil of a middle east persuasion, wearing a cloth head covering. He said he was not going to examine me because I look good. He explained his role. He would drop tiny gold stuff on the tumor area to guide Dr SS when working on the focusing of the SBRT equipment.
We scheduled the gold-dropping event on April 3rd.
So until then, I keep the energy level high, the stress level low.
And with the new knowledge about the tumor, we can make room for a little happy dance!