When you are first diagnosed with lung cancer, everything seems to move at breakneck speed on one hand and on the other hand, time flows like molasses. You rush from one test to the next. My primary care doctor (PCP) felt a suspicious knot on my collarbone and astutely sent me for a CT scan that very day. The CT scan showed suspicious activity in my lungs so my PCP ordered a PET scan. The PET scan couldn’t happen until insurance approved its cost. Time slowed while we waited for that approval.
Newly diagnosed patients often feel like they are on a raft in the middle of the ocean without a paddle, surrounded by sharks. There are so many questions when hit with an unexpected diagnosis like lung cancer.
Below are a few of my top suggestions for the newly diagnosed and even for those of us who have been on this journey for some time.
Have you heard of Precision Medicine? If you haven’t, you are certainly not alone! But, it is very important for you to know it exists, what it is, and how it can benefit you.
What is precision medicine?
The National Institute of Health (NIH) says this about precision medicine:
“Precision medicine is “an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person.”1
Mutation testing is a subject near and dear to my heart. I can’t say how many people I have met who have lung cancer but know nothing about genetic testing. As a matter of fact, not so long ago, I didn’t know much about it either. (And, to tell you the truth, I’m still far from an expert. But, I know enough to tell you that the testing is very important and it can be a life or death test.)
So, What is Mutation Testing?
Mutation testing has a bunch of different names: molecular profiling, molecular tumor testing, biomarker testing, genomic testing, testing for gene mutations, genetic testing, genetic mutation testing, and more. It can be very confusing, for sure. But, here’s what you need to know – if you have lung cancer, especially nonsmall cell lung cancer (NSCLC), you are doing yourself a big favor if you ask your oncologist to get mutation testing, by whatever name, done.
Why is mutation testing important? Our cancer is unique to us. Each tumor cell is made up of specific proteins and molecules. According to American Cancer Society, normal cells do not have mutations, cancer cells do. Genetic testing allows doctors (pathologists) to take a detailed look at tissue from your tumor to see what mutations exist in its DNA and exactly what proteins are present.
How is Mutation Testing Done? Does It Hurt?
No. Or, it doesn’t hurt if you have tissue available from your previous biopsy. The pathologist will just use some of that tissue to do further tests.
If you do not have enough tissue left from your biopsy or the tissue is old, it will be necessary to get more tissue. Depending on where the tumors are located, the procedure could be simple or a bit more involved. I had a tumor on my supraclavicle lymph node (collarbone) so it was very simple to take tissue from it for further testing.
Why is It Important to Have My Tumor Tested?
Your tumor was already tested to a certain degree. The pathologist took the tissue from your biopsy and used it to determine what kind of cancer you have. If you have nonsmall cell lung cancer (NSCLC), then the pathologist looks at the tumor a little closer to determine what subtype it is. Generally, you will learn that you have adenocarcinoma (about 40% of NSCLC cases) or squamous cell (epidermoid) carcinoma (25-30% of NSCLC cases), but you may have one of the less common types, large cell (undifferentiated) carcinoma, adenosquamous carcinoma, sarcomatoid carcinoma, etc..
Your oncologist uses the information from the pathologist to determine a treatment plan that will be the most effective against your tumor type. Recently, it has become more affordable to provide the oncologist with even more information about your tumor type so that he can hone your treatment plan further.
Depending on the characteristics the pathologist finds in your tumor, your oncologist may decide that there are targeted therapies or immunotherapies that likely will be most effective against your tumor(s). In (very) simple terms, targeted therapies attack just your tumors, instead of all of your cells like chemotherapy does. Immunotherapy works with your own immune system so that it can see and destroy the cancer cells.
According to Memorial Sloan Kettering Cancer Center, about 60% of adenocarcinoma lung cancers will have specific mutations. Many of these mutations may have targeted therapies or immunotherapies available to treat them.
Among the most common mutations for which there are targeted therapies are Epidermal Growth Factor Receptor (EGFR), Anaplastic Lymphoma Kinase (ALK), ROS1, and T790. Scientists are discovering more and more mutations every day and finding treatments that work effectively against them. Immunotherapy works best when there is a large amount of a protein called PD-L1 in your tumor.
I’ll take this time to make a brief plug: more, more, MORE money is needed for lung cancer research. We’re talking lives here!!!!
Robert went for a physical yesterday. He saw the doctor who first discovered my cancer, Dr. Donna Casey. I went along, partly because i wanted to hear what was said about his health and partly because I wanted to see Dr Casey again. The last time i had seen her, i had just been told i needed to get into a clinical trial because traditional treatments were not working any longer. That was in July 2013.
I worried a bit about whether she would remember me or not. It had been over a year and a half since i had seen her. I count her my angel doctor, but she sees many, many patients every week. There was not as much incentive for her to remember me as for me to remember her. I will never forget her! And will forever be in her debt!
Dr. Casey walked into the room, spoke to Robert, and then turned to introduce herself to me. When she saw who was sitting there, she broke into such a big smile. She was so excited. “I know YOU,” she exclaimed.
She started asking a volley of questions and then remembered that Robert was the patient this time, not me. She asked him if he cares if she spent just a few minutes catching up with me before getting to business with him.
While we discussed my treatments and how well they were going, she had to reach for a tissue. She was so overwhelmed with joy that big alligator tears had formed in her eyes. She kept assuring us that she was crying happy tears. Of that, there was no doubt.
I have always requested for her to receive copies of my CT scans, which happen every six weeks. I often wondered if she (or her office staff) considered them irrelevant. it is a lot of paperwork to keep up with for a patient you rarely see. I was shocked and humbled when she said she reads every report. From her conversation, it was apparent that she does!
All of this might not be so hard to believe if Dr. Casey had treated me for years prior to her discovering the knot on my collarbone that set the whole fight against stage IV cancer in motion. But, that isn’t the case at all. She discovered that knot on my very first visit.
Immediately, she scheduled me for CT scans … that day. I heard from her just a few days later, with the information that there could be a problem and that her office was going to work with my insurance company to verify that they would pay for a PET scan.
I felt great. I went to see Dr. Casey at the very end of October 2012 primarily because i hadn’t been to the doctor for about 10 years for a physical. The main thing that drove me was weight gain. I kept packing on pounds and couldn’t lose them after going through menopause and quitting smoking at about the same time. I assumed i had thyroid issues. I never, ever dreamt that i had cancer issues!
I had never heard of a PET scan so i immediately got on Google to see exactly what kind of scan it was. That was my first hint that i might have some kind of cancer. PET scans are used to diagnose cancer cell activity, heart disease, and dementia. I was confident i didn’t have problems with the latter two.
Dr. Casey’s office made the appointment for the PET scan as soon as approval for the test was received. She is amazing in her ability to get things done, so we didn’t have to wait long for the appointment.
By now, i surmised i had some kind of cancer. Since i had watched my dad die very quickly from lung cancer, i was praying it was any kind but lung cancer.
The only time we ever had to wait for what seemed like a lot of time to get a response from Dr. Casey was to hear what the results of the PET scan were. It took a week or so before we got the call that I had cancer … lung cancer. It was a call she hated to make, but she had already done everything for me. We had an appointment with an oncologist the very next morning.
Dr. Casey asked us to come by her office to report after the visit to the oncologist, Dr. Lalan Wilfong. He reported that the cancer was extensive. Because of its location, it was inoperable and radiation wasn’t an option either. Chemo was my only hope. He ordered a biopsy so we would know exactly what kind of lung cancer we were fighting.
By this point in time, we were nearing the Thanksgiving holidays. The date for the biopsy was set for after the holidays. Dr. Casey asked usmif we couldn’t have the biopsy done that day, rather than waiting. “Well, sure, but can we get in to have it done?” It was already nearing noon and, if memory serves me, it was Wednesday before Thanksgiving.
The amazing Dr. Casey pulled her magic strings and in just a few minutes, we were headed to Presbyterian Hospital to get a biopsy. There was never a moment to sit and worry. She was about action and we were so grateful.
Because she made things happen so quickly, it was only barely over a month between the time i had my first appointment with Dr. Casey and when i was in the chemo room getting my first chemo treatment on December 5, 2012.
By May or June 2013, i had reached the end of the road for traditional chemo. The tumors responded as long as the poison was infused into my veins. But, as soon as treatments ended, the tumors took off again. Dr. Wilfong told us that there was another chemo drug we could try , but he wasn’t optimistic about it. It didn’t work as well and it made patients sicker than the previous drugs i had received. The idea didn’t appeal to me at all.
He recommended that i consider getting into a clinical trial at the Mary Crowley Center. I had never heard of that organization, but was willing to see what it offered. However, i was really hoping to go to UTSW. I had heard good things about them.
When Mary Crowley was not at all responsive, we went back to see my angel doctor, Dr. Casey. We told her what was going on (or not) with Mary Crowley and asked what she thought about us going to UTSW. In minutes, she had called Dr. David Gerber and set us up an appointment.
The rest is history. I signed up to participate in an immunotherapy trial. My first treatment was in July 2013. The results have been awesome. I am the only patient still on the trial, at least at UTSW, but it is working great for me. My tumors have sat stable since i started the trial. Sometimes, the radiologist classifies them as scars, though Dr Gerber scoffs at that. He said there’s no way to tell from a CT scan.
As long as they sit dormant, i am okay with them being there. I wish they would go away entirely, but this is the next best thing!
And, for all of this, i owe Dr. Donna Casey. She is my angel, if ever there was one!