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.
I got a post from someone new to the lung cancer world today. I was struck by how much smarter she is than I was when I was first diagnosed.
Trusting my astute PCP
After I was diagnosed by my primary care physician (PCP), I simply did what she told me to do. By the time she delivered the bad news that I had lung cancer, she already had an appointment set up for me with an oncologist for the next day.
I recently saw someone ask how important it is to have a connection with their surgeon. It got me to thinking about it. My thoughts were a little different than those of most respondents. I’m interested to hear what you guys think.
It depends on the patient
My response was, basically, “It depends.” I think it depends on your personality and your needs as a patient and I also think it matters how long the relationship is likely to be.
When I was diagnosed with lung cancer, I didn’t know anyone else who was still alive and fighting the disease. I started searching around and ultimately landed on a group where I feel totally at home – it is called WhatNext.
I am going to post two links below that will help you know if you think WhatNext will be a good fit for you. I go to a lot of different lung-cancer related forums, but I spend most of my time on WhatNext. It feels like home to me.
On WhatNext, there are caregivers and loved ones, survivors, and people from the medical field for all kinds of cancer from skin cancer to liver, lung, or lymphoma cancers. Take a look at the information below and please join, if it sounds like a place you’d like to be a part of!
This link tells you a lot of the benefits of the group in an advertising way: https://www.whatnext.com/ilp/lungcancer/?campaign=AMLC
SandiA is a Stage 4 Melanoma survivor who is active on the site. She tells you why she loves WhatNext so much!
Let me know if you joined the group because you saw this post! I look forward to seeing you! I think you’ll love it there as much as I do!
I just saw that a new series is being developed called “Experts by Experience.” I just love that title. It is especially meaningful to me today because of a recent experience at… READ MORE
I have a few vents, actually. One has to do with the stigma associated with lung cancer. And, I am going to address that one real soon. The stigma is killing people. Lots of people. It is frustrating, maddening, an outrage, and yes, again, deadly.
But, I have a vent for today that is fresh on my mind that I want to talk about. This one may affect people who have had lung cancer for a while and who have been quoted a bit all over the Web and in magazines, etc. Because it may have happened to you, too.
Today, I went in search of an article where I had been featured. In the search box, I typed my name and lung cancer.
That search brought up legitimate sources … and then it showed my name as being included in a book. This book was co-written by a Yale-educated MD (who also has an MBA from Wharton Business School) and a Ph.D. who has reported award-winning health and science segments for Dateline, Today Show and 48 Hours.
First of all, the authors never contacted me for permission to include my information in their book. Perhaps, since I put myself out there on the Web like I do, that is no problem. The problem is that they published completely false information to support their premise.
What was true in the book:
- My name
- My date of diagnosis
- A quote
What was false in the book:
- My diagnosis (supposedly adenocarcinoma (true) with BRAF mutation (false))
- My treatment (nivolumab (true) combined with chemotherapy (false) – in fact, they were not even trialing chemo plus nivolumab when I began my trial, I don’t think)
- The results of this treatment (tumors spread all over my body shrank (false); my tumors remained stable for 4.5 years while I was in the trial testing nivolumab. They did not shrink, they did not grow. They stayed stable. Furthermore, I don’t have tumors all over my body. I had tumors in both lungs and in lymph nodes in my neck. I don’t consider that all over my body and I doubt you do either.)
I am outraged. Absolutely furious. These people who wrote this book apparently have a lot of clout. And, yet, in at least this instance, they are using false information to support their premises.
Now, I don’t know about you, but I don’t deal lightly with liars. Furthermore, when a person is caught in a very obvious, blatant lie, I tend to question every other word out of their mouths (or off of their pen on paper). Without fact-checking every single word in one of the many books published by this duo or in anything they would say in conferences, I would have to believe none of it.
And, here’s the saddest part of all. I have surpassed five years of survival with Stage IV lung cancer. I have lived the majority of that time to the absolute fullest. I have done very well on nivolumab. I have had over 100 infusions of the drug – how many others can say that I wonder?
Maybe I am biased since it is me we are talking about, but I think I have a pretty remarkable story without fabricating new facts. I would not mind being featured in a book without first being contacted IF … IF … IF … the book told the truth.
I see my oncologist on Monday. I already sent him a copy of what was written. I will be very interested to hear his take on it all. My first inclination is to find an attorney who might be willing to sue this duo on contingency. My goal isn’t money. My goal is to shed light on the fact that false information is being published to support premises. That’s dangerous.
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!