This year things were going so well. I had clear scan after clear scan. We moved the scan frequency to every four months because I was 3 years out from last finishing treatment and we were feeling like I was "safe". I was feeling the best I have since being diagnosed.
I had a great streak going. Three and a half years of an anxiety inducing scan every three months that was fortunately clear every time. Unfortunately that streak just ended. With this being my fourth recurrence, it would seem that this would become easier, but this one was as hard if not worse than them all. Let's walk through how we got here.
In late September I was laying in bed watching tv when I happened to feel a lump in my arm. It wasn't too large of a lump; around the size of peanut. Immediate panic set in. So many questions/doubts/concerns filled my head as I layed there for what must have been hours. Could it be back? How long has this been there? How could I not notice this earlier? It's been 9 years since surgery this must be something else right? If this is Ewing's what does this mean for treatment? Is this spread elsewhere?
First thing the following morning I messaged my oncologist at VCU and they scheduled to see me 2 days later. She felt around my arm and felt a lump that was round and movable. They were not too concerned about it (a common theme for me it seems). With it being nine years since removing the initial tumor from the arm, and the characteristics of this mass, the thought was this was an enlarged lymph node or some other benign lesion. To be on the safe side we added a CT of the right arm to the already scheduled CT of the chest for the following week.
The CT of the chest came back clear! The CT of the arm showed a mass that was 1.9cm x 1.4cm x 2.5cm. My care team was still not convinced this was a recurrence, but were not sure what it was. At the time we thought about a biopsy, but the problem was that the mass was poorly located next to major nerves and veins. We opted to go for a PET scan next before going with a biopsy to avoid risk. A PET scan was then scheduled for late October.
The PET scan lit up in four spots; both of my hips, a lump on my face, and the arm. I'll discuss these spots in a second, don't freak out. We still were leaning towards this not being a recurrence as the the lump in my arm had an SUV max of just 2.6. Over 5 is concerning for a sarcoma, 2.6 is low, but still possible to be Ewing's. I should know, the original tumor back in 2013 was just 3.1. I was given the option to either watch and wait for another scan or to biopsy it. I elected for biopsy and that was scheduled for early November.
One week afterwards, the biopsy results were in and they came back positive for Ewing Sarcoma. It was officially back again. My care team was shocked. Despite all of the assurance I was receiving I think I can safely say that me and those close to me knew this result was coming. The nodule itself wasn't painful or hot like I remember the first one being, but the fact it was right where the first tumor was located was hard to ignore. Anyway, at this point I wasn't as upset as might be expected for such bad news. I had already pretty much accepted it by that point and just wanted to get a plan together. So thats what I did next. I reached out to my oncologist in Cleveland and my original surgeon at UPenn and set up appointments for both the following week in mid November.
I first had a virtual visit with my oncologist at the Cleveland Clinic. He had concerns on the face lump and hip which surpised us, but wanted to see what my team at UPenn thought about it. We also discussed chemo and the potential for radiation if the tumor can not be operated on. Before making any definitve plans on systemic therapy however we needed a plan on local control. So next I traveled up to Philadelphia to meet with my original surgeon. She connected with the oncologist at Cleveland and came to the agreement that the hips were just lighting up because they surprisingly have not fully healed from the bone graft procedures in 2013-2014. The face lump was also highly unlikely to be Ewing's as it has been there for years now with very little change in size. Sidenote, I am going to be getting the face lump removed as it is very annoying when shaving, but have to take care of the cancer stuff first. That leaves me with evidence of just one spot in my body of cancer. Pretty great news all things considered. I always think this; I've been threading the needle between being unlucky and lucky all at the same time. She was not fully able to assess whether this could be removed or not with the imaging I had so we scheduled an MRI for December 1st.
Days after the MRI I received the result that the mass was now 2.5cm x 2.4cm x 1.8cm. Growing, but growing slowly (for Ewing's). All that mattered was that it was operable, altough it would be a challenge as it had the thinnest of margins in between the nerves. Though radiation was also an option, the risk with radiating the area is that it could cause the cadaver bone to crumble, necessating major rework. With full trust and confidence in my surgeon I elected for surgery.
On December 13th, nine years and 3 days after the original surgery I sat in the same hospital waiting to have a tumor removed from the same location in my arm. And that we did. The surgery itself took around 1 hour, a farcry from the 6+ hour surgery the first time, but don't let the overall time make this seem straightforward, it was anything but that. Turns out the mass was actually connected to the nerves and required it to be tediously (surgeon's words) peeled off of the surrounding structures. When the surgeon met my parents in the waiting room, she just gave a sigh and explained how difficult this ended up being. One thing to make clear is that the tumor was removed with just a 1mm margin around it so very little healthy tissue was removed. No impacts to the humerus either. Other than pretty bad nausea I was not too bad after the surgery and was able to travel home that same day.
Last week the pathology report showed that the margins were clear. Yay!, but with it being so close at 1mm, my surgeon explained that radiation might make sense to reduce the risk of this coming back. There is definitely some risk, but she said that if it were her she would instead elect to watch this and then radiate it if it does come back. As for chemo UPenn recommends no chemo, but also explained it could be beneficial for the same reason as the radiation. The tumor size on the report is 3.2cm x 2.5cm x 1.6cm so sadly it grew again. To come to a conclusion on these treatment options I am meeting with my oncologist at the Cleveland Clinic this week for a virtual visit.
As for how I am doing right now, I have some pain and numbness in my arm. I have a followup at UPenn this week and will hopefully have some reassuring news on this because this has been harder than I expected post surgery. The pain is generally not too bad, but the numbness is. The numbness runs along the entire underside of my arm and extends to my ring and pinky finger. It is really bothering my fingers to just type this blog post. So many typing mistakes and achiness in the arm. I'm hoping this improves as the swelling in my arm goes down. Maybe the ulnar nerve is being compressed or there is some damage to the ulnar nerve that needs to heal from the peeling of the mass. I'll find out a lot more this week and will include those details in my next update.
Some final thoughts. The whole workup to diagnosing this tumor and the surgery felt like a repeat of 2013 to us all. We did not take this well. Like I mentioned earlier this recurrence just felt "different" than the previous ones. I was always really afraid of this coming back to my arm. Having this return to my arm means that the three months of chemo following the original surgery + the 6 months of chemo I received after my 2nd recurrence + the 9 months of chemo I had with my 3rd recurrence was not enough to knock it out. That is a tough pill to swallow and something I can't get out of the back of my head. With that said, at this point I'm lucky to have had the opportunity to blog about this for all of these years. Would I rather be giving you all nice yearly updates with an all clear? Of course, but that just hasn't been the path that has been set for me. I have a functioning arm that hopefully will only improve with time and I have an all-star team of doctors that will get me across the finish line. And most importantly I have supportive family and friends that will continue to support me. I'll say it again, I've been unlucky, but also lucky. This is a setback, no doubt about it, but I'm cancer free right now, and that means I'm still winning.
I hope you all enjoy the holiday season. Also please keep those battling life threatening illnesses in your prayers.
