Jan 4, 2012: It was about a month ago that I finally decided to go to the doctor after having some chest pains on my LEFT side. I had a routine physical and blood work but the doctor couldn’t find anything wrong so he suggested I get a chest x-ray. With the blood work coming back fine and everything else checking out I was in no hurry to get the x-ray but finally decided to go early the morning of Dec 12th (almost a week later). That’s when the roller-coaster started.
To catch you up on the series of events, and for simplicity’s sake I’m giving the highlights below by date. It should also give you an idea of how there have been ups and downs, unfortunately mostly trending down. Also, if you’ve heard part of the story and aren’t caught up you can at least see where you left off.*
I go in for a chest x-ray, the x-ray tech immediately starts asking me questions… “are you in pain?”, “do you smoke?”, etc. I answer “no” to everything. She asked me to wait in the waiting room. About 5 minutes later she says my doctor wants me to have a CT scan and she walks me around the corner to CT. I get the CT. I still haven’t seen anything and don’t know why, but something must be up.
A few hours later my doctor says I need to go see a thoracic surgeon. (They called Julie on the home phone around 4pm and she only knew I had an x-ray at the time)
I talk to my doctor on the phone and all he tells me is that they saw a mass and that I should go to the thoracic surgeon ASAP.
I got to see the thoracic surgeon. He ask me how old I am, then immediately ask me if I smoke. I would later find this to be a pattern with most medical professionals I’ve met during this process. As soon as I say “I’m 35” they say “do you smoke?”. For the record, I’ve never smoked or really even been around smokers. I don’t think there’s an actual record or that it really matters… but thought I should put that out there.
Thoracic surgeon tells me I have a mass about the size of a golf ball in my RIGHT lung (upper lobe). He hasn’t called it cancer and can’t believe that I was feeling pain on my left and no pain on my right. At first he suggested surgery, then reconsidering that I’m a 35 year-old non-smoker with no symptoms he suggests a biopsy.
I get my second CT and biopsy at Dekalb Medical (Decatur, GA). Within 20 minutes the thoracic surgeon pops in my recovery room (I wasn’t supposed to see him till the following week) and tells me the initial microscope work shows positive signs of CANCER. He tells me it is probably stage 1 lung cancer. A Dekalb Medical oncologist sees me about 10 minutes later and suggests I get a PET scan and an MRI to make sure nothing is in my brain (I thought that was funny).
I’m told I won’t know what it really is till the pathology report gets back some time the following Tue or Wed. At this point in time it could be any kind of cancer and just showing up in the lung.
I’m referred to Emory and am able, through a friend of a friend, to get an appointment with the Chief of Thoracic Oncology.
I have the PET scan and later that day talk to the thoracic surgeon who confirms that it is stage 1 lung cancer and identifies (from the pathology report) it as adenocarcinoma…
…except it’s not stage 1… I meet with the Dekalb Medical oncologist who tells me that the PET scan shows a lymph node right next to the golf ball (main tumor) is showing up positive for cancer, so technically it’s at least stage 2. I have an MRI already scheduled that day and he mentions that we need to make sure that comes back clear or else it would be stage 4 (if it spread to the brain).
Most people at the Tuttle household are freaking out this day.
I have the MRI and my brain comes back clean… I’d never been so happy to only have stage 2 lung cancer… Christmas is saved as the thought of having dodged something much worse helps lessen the clear and present danger.
The oncologist suggests I go to Duke for a second opinion instead of Emory. I decided to just go with Emory and save Duke as an alternative if treatment with Emory doesn’t work.
I meet with Dr. Ramalingam, Chief of Thoracic Oncology at Emory’s Winship Cancer Center. Emory seems a cut above all the other doctor offices I visited. Dr. Ram seems pretty good and confident that this can be cured. The downside… Dr. Ram says a second lymph node that didn’t show up on the PET scan but does look enlarged on one of the CT’s looks suspicious and could mean that I have stage 3. Dr. Ram says “the good news is you don’t have stage 4”.
The suggested treatment for my situation at stage 2 is surgery to remove the golf ball and sidekick, then 3 - 4 rounds of chemo (9 - 12 weeks)
If it’s stage 3 then we go right into chemo, surgery may or may not come later.
It is suggested that we do one more test in order to find out if the 2nd or possibly more lymph nodes are positive. The test is a surgical procedure so I’m referred to an Emory surgeon who would also be the same person to perform the larger surgery if that is part of the treatment.
Dr. Ram also mentions the possibility of using a clinical trial of a drug that is already approved for kidney cancer patients that may have benefits to lung cancer patients. Decisions on this would come after we have locked down the staging.
Oh, and there is some concern with that lymph node that is positive from a surgical perspective… apparently it is in a tricky spot that could cause some complications with surgery. Dr. Ram defers to the surgeon on this but brought it up.
Met with Dr. Seth Force at The Emory Clinic. Dr. Force (cool name) is a thoracic surgeon who is also the head of lung transplants (sounds good to me). Dr. Force tells me much of the same information as Dr. Ram, they seem to be on the same page. Dr. Force does seem to imply that I’m in stage 3 but says it can’t be confirmed till I get the next (last?) test before treatment/staging.
We talk a little about the potential surgery that would remove the golf ball even though it may not be part of the treatment immediately. The complication Dr. Ram mentioned comes from the lymph node next to the golf ball, apparently it is right on top of the airway that leads to the bottom two lobes. The issue is that you have to take out the cancer and surrounding tissue. Since the node is right next to the airway (I’m not using the correct medical term) Dr. Force may need to take too much of the airway to keep the connection to the bottom two lobes… meaning that there is a chance he would have to take out the whole lung.
The scary thing is that he says he won’t know till he actually gets in whether he can save the lung or not. Also keep in mind that this scenario is the better of the two paths I could get coming out of the next test. Yay me.
Next the step is a mediastinoscopy on 1/9/2012. I have to be there at 5:30 in the morning, I’m the first surgery of the day. The will test 5 lymph nodes and should be able to tell within the hour if they are positive, if they are negative it takes several days to confirm that in the lab. Once they are confirmed one way or the other I will officially be staged then we will know which treatment path to take.
*I do want to apologize for not keeping everyone in the loop. The whole reason I’m doing this blog is because I haven’t been able to keep everyone up to date. I’m getting new information all the time and forget where I’m leaving off with the story for each person I’ve told or each person Julie’s told… not to mention our stories don’t always perfectly sync up. So, hopefully this will get everyone on the same page.