Lung RFA Round 2: The Power of Positive Role Models
I’m thrilled to let you know that my surgeon has agreed to give me another Lung Radiofrequency Ablation (RFA) surgery on August 27th! The second half of this post focusing on the Postive Power of Hope is quite meaningful to me & the meat of the post, so I hope you decide to read that far in! He hopes to remove another 2-3 more tumors. I already wrote extensively a few months ago on what the RFA procedure is & why I am so excited to attack my lung tumors with it so I won’t repeat all of that again – but I hyperlinked that post for any new readers in the crowd. Since my first RFA surgery went so well, it is now time to get back on that Lung RFA horse – I’m a lot less nervous about it this time because this ain’t my first rodeo!
At the root though (which I think is worth repeating) I am excited to do these RFA procedures because my current treatment (Erbitux) – although effective at containing & managing the cancer – is at its heart a defensive play. Don’t get me wrong, I am ecstatic and very thankful that such a well-tolerated therapy is keeping my cancer under control – turning something like Stage IV cancer into a successfully managed chronic condition. At a high level, I honestly do strongly believe in that very positive view!
Staring at those 9 remaining lung spots on a CT-image also however intrinsically causes feelings at a much lower evolutionary level: violation and anger. At a very basic level – I just want those damn spots gone and at least for my Stage IV CRC, I know that there is no current drug which can do this. Drugs may shrink my CRC tumors (even below detection level) and drugs may contain my CRC tumors but they aren’t able to remove them. Hopefully in the relatively near future the immunotherapy cavalry will arrive to do this but for now what can? Brute force strategies such as surgery & radiation. Once I have a CRC tumor large enough to be seen on a CT scan – those are the only two options to 100% remove that particular tumor from my body. Therein lies the psychological allure of surgery. It is at its heart, an offensive play. You are counter attacking something which is trying to hurt you. And psychologically that feels great. It does have some risks but I have decided those risks are worth it.
But… you basically said all of that last spring prior to your first lung RFA surgery – what has changed since last time?
What is new is the incredible power of positive role models and how it impacted my mindset & approach to obtaining this new RFA.
My mindset approaching the first RFA is fully described above. I was excited to do it for a number of reasons but they came down to two overarching themes:
- A continued defensive strategy: (reducing tumor load to try to both buy time as well as impede evolutionary mutation into a more aggressive cancer).
- A new offensive strategy (offensive from an aggressive vengeful point of view, wanting to hit back at the cancer that has been hitting me for the past few years).
Although there are elements of both of these mindsets still present – a third strong feeling was added to the mix the past month as I actively started to lay the groundwork to obtain approval for this new RFA surgery. And it is a much more positive feeling than what drove me last spring: HOPE.
Why Hope? It all comes down to a person I met at Colon Camp last June. I’ve already written about what a powerfully positive experience that trip was. Taking those feelings out of the abstract however, the experience translated into real world impacts on my treatment plan mindset. One of my fellow 2016-Colondar 2.0 models Phuong Gallagher has an incredible cancer story. A story which I won’t write here (to read it, you’ll have to wait until next March when the Colondar 2.0 annual magazine publishes! 🙂 ) I did want to mention one portion of Phuong’s story here however, purely as it relates to my own. You have probably been curious who the woman is next to me in the Fight CRC “The Currently Incurable Scientist” column’s promotional photos.
Now you will know who she is! Say hi to Phuong – a very close friend and Stage IV CRC survivor Sister of mine!
Phuong is an incredible 8+ year survivor of Stage IV CRC. Look at the photo – in a million years neither you nor I would ever suspect that she is an 8+ year Stage IV CRC survivor. She is incredibly healthy, fit and as far as scans are concerned has “No Evidence of Disease” (NED). Is she “cured”? No one knows for sure but probably not – her cancer was completely chemo-resistant and has reoccurred a number of times, so there is a good chance that there are still microscopic metastases present in her body. But she is NED and living an extremely healthy life to its fullest. And she did not get there by an easy route. Phuong was VERY aggressive in terms of managing her disease, present in multiple sites, with multiple surgeries and ablations.
How did meeting her impact me and my RFA strategy? Basically the positive role model effect. In Phuong I saw someone with a similar diagnosis and prognosis as me – who through a lot of drive and hard work (and probably some luck and/or Divine Intervention too) was thriving in fantastic health at an 8 year time point. This was a scenario in my own future I had previously thought was ~impossible to achieve without an immunotherapy miracle.
Yes, some Stage IV CRC is curable and generates very long term survivors – but usually only when both of 2 conditions are met: 1.) metastases are highly localized, usually in a single anatomical site, so the entire group can be cut out and 2.) micrometastases that can’t be seen are sensitive to chemotherapy & can basically be mopped up with 6 months of chemo. Phuong’s case was different from that and matched my own case in a number of ways. She had more than one anatomical site of metastases. Her cancer was resistant to both standard chemo cocktails for CRC (FOLFOX & FOLFIRI). Also like mine, her cancer was slow growing and not very aggressive – opening up treatment possibilities that would not be possible in the face of a more aggressive cancer.
Basically looking at Phuong, I was looking at many facets of my own cancer in the mirror. And that image I was now looking at in the mirror was one of NED, completely different than my own body’s current state. Importantly, she is also both NED at 8+ years as well as living an extremely healthy, high quality of life. This is something I had not even dreamed of being possible via current treatment options. Seeing that image… being close friends with her in person to increase its impact… ignited an incredible fire of HOPE in me that I can’t emphasize enough. I already had Hope for upcoming new experimental treatments but this was something different. This was HOPE using current treatment strategies.
In that way, my entire mindset toward surgical management of my disease for potential long-term disease control has changed in the past 2 months. And that feeling of Hope is an incredible shot in the arm, infusing all aspects of my disease treatment mindset & planning. I walked into my oncologist appointment a few weeks ago with Phuong’s healthy picture and her clinical history in hand. Filled with new-found Hope I said “If my friend was able to do this; I want to be as aggressive as her and try to follow her same path”. Last week I did the exact same thing at the surgeon’s appointment. From my side of things it was a feeling of Hope, excitement & empowerment. Thankfully my CT-scan history – the fact that I have such a non-aggressive disease (like Phuong) over 24 months of constant monitoring – is now starting to open up treatment doors that had previously been shut – the doors just needed to be kicked a bit.
So that is the key message embedded in today’s announcement of lung RFA #2. It wouldn’t be happening if the biology of my particular cancer hadn’t supported it. It wouldn’t be happening if my RFA #1 in June hadn’t gone so well. And importantly, it probably wouldn’t be happening without meeting Phuong via the Colon Club to give me the Hope to push for more aggressive surgical intervention. If she is able to be a very healthy 8+ year survivor – I know it is “possible” for me as well. And that possibility is a great feeling to have. I hope that others can also be filled with Hope by her success!
What happens after this RFA #2? Talking to the surgeon: if it goes well, then we’ll discuss the possibility of follow-up procedures to take out more lung tumors. Do I think this will cure me? No I don’t. But do I think there is a chance that it could give me an excellent long term quality of life while I wait for the immunotherapy cavalry to arrive? I now have Hope that it is possible.
Hope is one of the most powerful human emotions and lately I have been filled with more & more of it. If my new found Hope, and its consequences, buys me more time for the immunotherapy cavalry to arrive, it could perhaps save my life.
The Power of Positive Role Models indeed.
PS For all of you who pledged my current runathon this new lung surgery will cause me to skip my 10k that weekend – so you’ll save 6.2 miles off of the final tally – but I don’t plan on missing any more than that 😉