Recently, I shared about the bumpy path that led to the diagnosis of my desmoid tumor. I wish I could say that once we identified my condition it was smooth sailing, but the story simply didn’t unfold that way.
An Important Note
Before I begin to share the next part of this journey, I want to pause and share something that took my heart a little bit of time to process.
At no point do I look back on this journey with regret, nor do I feel we were ever truly directed down the wrong path. Each step in this journey has served a purpose.
Yes, there are things that could have happened differently. Yes, there are things I should have questioned. But, ultimately, even amidst all that, I believe we were always headed in the right direction.
Because I serve a loving God, and though He doesn’t promise an easy path through life, I know He is never going to purposefully lead me in the wrong direction.
My mission throughout this journey has been to live and learn along the way. As I’ve both experienced and witnessed through others, it’s how you respond to what happens that truly matters.
We are where we are today for a reason. And the truth is that I have gained so much more than I have lost during the past few years.
There are still points in the journey that frustrate me, but during those times, I pause and remind myself of this phrase a professor in college used to share: “you don’t know what you don’t know.”
There is still so much we (patients, caregivers, doctors, researchers, etc.) don’t know about desmoid tumors. As I am recently learning, the best we can do is to choose the next right thing.
Back to the story…
Making Treatment Decisions
I’m going to pick up the story by sharing something quirky about me: the human body terrified me for a long time. I just really don’t like thinking about anything that goes on in the body for too long. When my sister was in college and worked on a human cadaver in her anatomy class, I legitimately hung up the phone if she started talking about it with me.
With that in mind, it’s likely not very surprising to reveal that I didn’t want to think about the crazy tumor growing in my leg. I wanted it out and I wanted to move on with my life.
But, we don’t always get what we want.
Once the diagnosis came in, I was only really working with one doctor: a surgeon. I put my full trust in him – it was my natural inclination. When he said I needed surgery, I said yes without hesitation.
Well, there was some hesitation…I had a trip to the Bahamas booked and wanted to make sure we could work the surgery around that. Clearly, my priorities were not exactly where they needed to be. But truthfully, at this stage in the diagnosis, I felt like I had an easy, clearcut road ahead.
Doing the Research
I researched the tumor and surgery seemed to be a very common treatment. I now know that, at the time, if surgery was a possibility, it was typically recommended.
At no point did I truly question the treatment plan.
I fully trusted that my doctor was looking out for my best interests. And while I knew the recurrence rate was up to 50%, surgery seemed like the best choice. I optimistically (and maybe naively) believed I was going to be part of the 50% of people free and clear post surgery.
What I’d Do Differently
What I failed to do was obtain a second opinion. The surgeon had operated on several desmoid tumors in the past and, given its rarity, I felt like that was significant enough to move forward. There are only two surgeons with desmoid experience in Indiana that I am aware of.
What I also failed to do was heed the advice of the Desmoid Tumor Research Foundation which shares:
Ideally, patients with desmoid tumors should be evaluated by a multi-disciplinary team which includes surgeons, medical oncologists, radiation oncologists, geneticists and nurses.Desmoid Tumor Research Foundation
My surgeon was so confident and, therefore, I was confident in him.
But I didn’t do these things. Instead, surgery was scheduled for April 15, 2016 (the week after my trip and exactly one week before I closed on my house). Everything went according to plan that day.
My surgeon was able to obtain clear margins. To obtain that result, 20% of my muscle was sacrificed. Thankfully, while muscle cannot regrow, it can rebuild to full strength. Though it was unclear how much muscle would have to be taken, this was a known outcome going into the surgery.
All in all, the day was defined a success.
The Road to Recovery
Recovery was significantly more difficult than I expected. My surgery took place on a Friday. I was told to prepare for several days out of the office so I mostly took the following week off work but did work from home when able. My mom also took the week off and stayed with me to help me adjust to the new limitations I was faced with as I recovered.
After a week, the brace that was supporting my leg was removed and I was able to move around more freely with the aid of crutches. The road to recovery was at its most difficult when it was time to take the crutches away. I hadn’t walked in six weeks and something that used to seem so trivial became the most challenging part of my day.
Thankfully, my sister, a physical therapist, helped guide me back through the process.
Since The Surgery
A lot has changed since my initial surgery. Nowadays, surgery isn’t the go-to treatment option. From what I’ve learned, it is still considered an option in cases where the tumor is extremely aggressive and something must be done as soon as possible. When it’s not absolutely necessary, doctors are leaning more toward it not being a very effective option due to the high recurrence rate.
But, as every desmoid patient knows, each individual situation is unique. These tumors like to behave in their own unique way. For some people, one surgery is all it takes so the risk can be worth it. For others, even with clear margins, like my case, the tumor(s) comes back even more aggressively and alternative treatments become the only option available.
What I’ve Learned
Since my initial treatment decision to undergo surgery, I’ve learned a lot.
Maybe you feel similarly to the way I did about my body, but maybe this isn’t a barrier you need to break. For me, it was a long road transforming the outlook related to my body from fear to wonder. I’m now enthralled by all it can do and in a place where I can make better decisions for myself because I more fully understand the choices I am making.
Advocate For Yourself
Looking back, I wasn’t advocating for myself. I figured the doctor would advocate for me. The reality is, as a patient, you have to advocate for yourself.
Today, I can confidently say we have a team of professionals that are looking out for my best interests, but it’s still important to advocate for myself every step of the way. When something doesn’t feel right, or I don’t fully understand why we are doing something, I have to speak up. It’s my life and, therefore, my responsibility.
One of the most significant lessons I’ve learned is this: ask questions. Then ask more. And then ask more. Keep asking questions until you are confident with the direction you are headed. Find doctors that don’t mind answering question after question. They do exist, I promise.
Overall, I encourage everyone to follow this advice: Ask hard questions. Question why. Always get a second opinion. And if you are able, bring along someone you can trust and knows you well.
If a doctor takes offense to any of this, I’d argue they shouldn’t be your doctor in the first place.
What Came Next: Treatment Trial and Error
For me, my hopeful wish to have surgery and move on with life did not come true. Following the surgery our watch and wait period began. By now, you already know the tumor did return. In my next post, I’ll share how the journey continued leading up to and following its return.