Saturday, November 11, 2017

It's Back

I've been keeping some very bad news from you. I have been quiet because I didn't want to put anything on here until I knew all of the details myself. I had all of the info when I wrote my last post, but the bad news would have erased all of the good news I had to write about. This one will be long, maybe my longest, so be prepared.

Well, with that out of the way, here are the details...

June 30th, I had an appointment with my oncologist for my 3 year scans. As you know, I always have my scan the day of the test. Thus, my oncologist doesn't have a final report at appointment time; sometimes a preliminary report, but not always. As usual, he looks over the scan himself, and gives me the good news that it's all clear. This time was no different. Afterwards, we made a stop at Ikea on the way back home. I bought a ton of furniture for my apartment. Everything was going great. We had a Fourth of July/College Graduation party going on the next day. 

The next day, at around 9 in the morning I received a call from Philadelphia. It was my oncologist. My heart sunk, I knew what he was about to tell me. He tells me that the radiologist found a 5mm nodule in my right lower lobe in my lung, and upon further review it was 3mm back in January. They just missed it then. Complete panic set in. My family and I were so devastated. I would say the lowest point of this entire journey so far. A call from your oncologist on a Saturday morning is never a good call. At this point there isn't much of a plan. Probably surgery, but he needed to wait for the tumor board meeting they have every other week to discuss a plan of action.

I received a call 11 days later with the plan. An appointment with a Thoracic surgeon was set up for me on July 26th. Ewing's Sarcoma is one of the most aggressive type of cancer you could have. In 6 months a 3mm tumor would have typically grown to a much larger size than 5mm. So I was given a long shot of a chance that it maybe wasn't a recurrence. Maybe a different type of cancer or a benign nodule. The only way to know for sure is by removing it, and running tests on it.

My appointment with the thoracic surgeon went well. I really liked him. He gave me the choice of waiting 6 months to get it removed or going for it now. He warned me that it is very small and waiting longer could make the surgery a lot easier. Also, sometimes when one pops up, more come up months after getting the first one removed. Waiting could possibly avoid having multiple surgeries. Given that I hate having cancer in my body, and I start my job mid September, the choice was pretty obvious. Taking time off to have surgery just a few months on the job would not look good. I was suggested to try a clinical trial to help make the nodule easier to find. You could read about it here. I accepted it. It was an infusion I received the day before the surgery. The drug binds to cancer cells. The drug lights up the cancer tissue which is able to be seen with special equipment. This makes the job easier for the surgeon, and also will show any spots that weren't picked up by the imaging tests. Thankfully he made room for me to have my surgery on August 8th. He was booked for the month, but he didn't want me to have to push my move out and basically my next big adventure away.

On August 7th I had my infusion. I only had one bad side effect which was a stinging pain in the arm of the infusion. I found that whenever I moved my arm it hurt a lot more, so I just kept as still as possible for the 90 minute infusion to reduce that possibility. Some patients had to stop the infusion because the pain was so severe. The infusion itself was green in color, which is to be honest, played out for a clinical trial.

The next day I had my surgery. The only thing that was different from previous surgeries was the epidural. I had one to block the pain in my chest because of all of the nerves in there. I would be in tremendous pain without it while recovering in the hospital. The surgery itself was less than two hours and minimally invasive which reduced my recovery time from months to weeks. I had a right lower lobe wedge resection. The tissue removed measured 6.2 x 6.1 x 3.5 cm. My lung capacity dropped less than 1%. I have three new scars now.


I stayed two nights at the hospital. My surgeon wanted me to stay another night, but I wanted out. I didn't really feel any pain in the hospital. I was sitting up in the bed, and taking walks in the hallway. I probably should have stayed because once the epidural wore off I was in a lot of pain. I took the painkillers for a few days, and then just started taking Tylenol for a few weeks.



On August 23rd I had appointments with my oncologist and surgeon. The pathology result came back as expected; Ewing's Sarcoma. I had a lot of questions to ask my oncologist. I'll highlight a few of these below.

Q: Will chemotherapy help me?
A: The team discussed it and is conflicted on whether it will help me or not. Given the circumstances of how it recurred, the more conservative option might be the best bet for now.

Q: Should I have other scans to make sure it's not anywhere else?  
A: They are confident that this is all. Having something like a PET scan wouldn't have found the one in my lungs anyway. If it's in other bones, I would have symptoms.

Q: How did it come back? Was the start of this nodule there all along or did this come into being in the last year or so?
A: This was there all along. The chemotherapy put it into a dormant stage, but did not completely kill it.

Q: What are my chances of beating this now?
A: Around 50%. According to my oncologist, I'm still in the "can be cured" pile. Most recurrences are not like this. They happen shortly after finishing chemotherapy, or progress during chemotherapy, and grow quicker. For most people the chance of cure after recurring requires a miracle. A single, small, slower growing nodule coming back around 3 years after hits most of the positive prognostic indicators for a recurrence. A 50% chance of beating this sounds bad, but in the context of a Ewing's sarcoma recurrence, this is the best I could hope for.

In early October I had my 3 month scans. I had them down here in Virginia, and mailed them on a disk up to my doctor. Now there is more uncertainty. A 6 mm nodule showed up in the same spot as the last one. My oncologist and surgeon discussed this, and believe it is some artifact from the surgery, like infection for example. It is concerning though, so my next scan will be at the end of November. If it is sarcoma again, I will be looking at radiation or a combination of chemotherapy and surgery. I hope it's nothing, because my survival odds would drop drastically.

So, how do I feel about this? This hurts me on so many levels. It just seems like there is no end in sight. I had 3 more scans left and I was going to be at the five year mark. I had all of that chemotherapy, and went through multiple surgeries only to now be worse off than when I was initially diagnosed. Now I have to start over after just getting over 3 years of clean scans. My five year date has now been pushed to 2022. That'll be nine years from the start of chemotherapy. Going through college I just put my head down and worked as hard as I could to create a great future for myself. I wanted more than anything to move away and start my new life with cancer behind me. And at the last moment, just one month before I move out and start my first job; I'm having surgery to remove a sarcoma nodule from my lungs. Now, I've been working for a little over a month. I love my job. I love where I live right now. I was just starting to get over what happened this summer, and then I get more uncertainty with my last scan. I feel like everything I worked so hard for, is slipping away from me.

Ok that was a lot of info. Here's a quick rundown of what happened and where I am now:
  • First evidence of the cancer recurring was January, but was only found on retrospective examination.
  • One nodule was found in my right lower lobe of lung.
  • Grew slowly for Ewing's. (3mm - 5mm in 6 months)
  • Successfully removed and no other nodules were found during surgery.
  • Doctors conflicted over giving me chemotherapy.
  • Survival odds dropped from 85% to 50%.
  • 6mm nodule on most recent scan in surgical area. 
    • Believed to be artifact of surgery, but reduced scan interval to 6 weeks for next checkup.
My next update will be early December. Hopefully it will be good news. Keep me, and all other people battling this horrible disease in your prayers. Also, have a great Thanksgiving.