I was scheduled to have my appointment on Black Friday, but I had to cancel it. On my way up to Pennsylvania, I got in a car accident. I was one of two people rear ended by the same person. It was not a chain collision, just a crazy person paying more attention to the dog on her lap than the road. At least no one was injured and her insurance is going to cover all of the repairs and everything, but it ruined the holiday and plans for the appointment. Also, I just purchased the car this summer, and it was just under 2000 miles. I unfortunately had to stay in Richmond by myself this Thanksgiving.
So onto what you came on here for. I had my appointment on December 1st, and the results are both good and uncertain. There are no new nodules anywhere, but the nodule from the last scan grew slightly. It grew from 5.7x5mm to 6.8x6mm. It is in the exact same spot as the one that was removed. In fact, the radiology report compares it to the nodule found in January, as if it's the same one. My oncologist and surgeon are still both leaning towards it being nothing to worry about, but want me to get rescanned in 8 weeks to be sure. We were hoping for shrinkage or no change. Shrinkage would have eliminated the possibility of another recurrence. It would likely be a recurrence if it had grown to 8 or 9mm. I fit neither or those cases so I'm still in the waiting game, but no bad news here.
Another thing that's new is that I'm seeking out a second opinion. I wanted to get one this summer after recurring, but I didn't have much time. I'm seeking out a second opinion because of a few reasons. There is no standard second line therapy for Ewing's Sarcoma. There are many different combinations of chemo and treatment options that doctors use for a recurrence, so another doctor could suggest a very different approach than what I'm doing now. And that leads to my second reason.
I had doubts about not having chemo when I recurred, but I mostly got onboard with it. I have read about many others battling this disease and I can't remember someone not having chemo after a recurrence. I suppressed those doubts, but they are back after having this nodule come up.
My oncologist hasn't really seen anything like this before. Both him and my thoracic surgeon describe my case as very "weird". Weird is not what I like to hear, especially from doctors who have seen so much in their careers.
I'm getting a second opinion at the Cleveland Clinic. They have a really good oncologist for Ewing's Sarcoma recurrences, and he does Skype calls, so it works out perfect for me. I'm in the process of getting the logistics finalized. In fact, I'll be picking up my medical images this Thursday on my way back home for the holidays. I'm hoping to have the call in the next 2-3 weeks. I plan on discussing everything about my case from the beginning to now, but I will focus on what has happened since the recurrence. I'm wondering about his opinion on chemotherapy, and whether it should be treated more aggressively right now. This doctor was suggested to me by a few comments in my last post, and the facebook group that I joined for recurrences. Thanks for the suggestion!
I trust my doctor, but I just need reassurance. When I was first treated I received chemotherapy to reduce the size of the tumor in my arm for surgery, but mostly to kill the micrometastases that are present in mostly everyone's case of the disease. In other words it wasn't the tumor in my arm that would kill me, it was the cancer cells that were too small to pick up on the scans. Why is it any different now? Don't I need chemotherapy to kill potentially other spots that have not showed up on the limited modern day imaging tests? I asked about this at the last appointment, and he understands my logic, but not doing chemotherapy is the most reasonable option at this point in his opinion. He believes chemotherapy could be an unnecessary risk to take.
My next update will be after I have the second opinion. I wish you all a Merry Christmas.
I had doubts about not having chemo when I recurred, but I mostly got onboard with it. I have read about many others battling this disease and I can't remember someone not having chemo after a recurrence. I suppressed those doubts, but they are back after having this nodule come up.
My oncologist hasn't really seen anything like this before. Both him and my thoracic surgeon describe my case as very "weird". Weird is not what I like to hear, especially from doctors who have seen so much in their careers.
I'm getting a second opinion at the Cleveland Clinic. They have a really good oncologist for Ewing's Sarcoma recurrences, and he does Skype calls, so it works out perfect for me. I'm in the process of getting the logistics finalized. In fact, I'll be picking up my medical images this Thursday on my way back home for the holidays. I'm hoping to have the call in the next 2-3 weeks. I plan on discussing everything about my case from the beginning to now, but I will focus on what has happened since the recurrence. I'm wondering about his opinion on chemotherapy, and whether it should be treated more aggressively right now. This doctor was suggested to me by a few comments in my last post, and the facebook group that I joined for recurrences. Thanks for the suggestion!
I trust my doctor, but I just need reassurance. When I was first treated I received chemotherapy to reduce the size of the tumor in my arm for surgery, but mostly to kill the micrometastases that are present in mostly everyone's case of the disease. In other words it wasn't the tumor in my arm that would kill me, it was the cancer cells that were too small to pick up on the scans. Why is it any different now? Don't I need chemotherapy to kill potentially other spots that have not showed up on the limited modern day imaging tests? I asked about this at the last appointment, and he understands my logic, but not doing chemotherapy is the most reasonable option at this point in his opinion. He believes chemotherapy could be an unnecessary risk to take.
My next update will be after I have the second opinion. I wish you all a Merry Christmas.
Hey Mike, I was looking up Ewing Sarcoma and your blog was the first to pop up. First off, I want to say that I commend your strength through all of this man. Wow. I can imagine all the ups and downs you’ve endured, but believe me when I say this: trust the process. Like you, I endured a similar journey with my wife, who was also diagnosed with Ewing Sarcoma. So just know, I feel every bit of emotion and obstacle you’ve described in these posts. My wife was diagnosed in March 2015 and went through a series of chemo and radiation. A lump appeared in her chin in December 2014 and after a routine of tests and scans, we found out it was a Sarcoma. Sadly, she’s no longer with us but I do want to say you should definitely consider a second option. Because of how surreal this chapter is, it’s easy to put all our eggs in one doctor’s basket but to be honest, the more specialists aware, the better. Plus, it brings in a bit more certainty. The fact that it’s on your mind, should be more of a reason to consider it as an option. You’re in my prayers man. Peace! Here’s my email if you need any positive vibes: diddybopp@gmail.com
ReplyDeleteHi Ralph, I'm sorry to hear about your wife. This cancer is so unpredictable. The second opinion will make me more confident in whatever route I take next. Thanks for the encouragement.
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