On January 29th, I went to my primary care doctor for a lump on my abdomen. I had been noticing the lump for at least a month – typically during my workouts – but hadn’t really thought much of it. Then, during one of the 4 snow days we had in January, I decided to google lump on abdomen. The results led me to go see my doc the next day.
At that first visit, my doc used the phrase “tumor on your abdominal wall” about 3 times. I quickly scheduled an ultrasound and continued googling. As I waited for the ultrasound appointment, I became a bit of a recluse. It’s interesting because I’m typically a wide open book, but there was something about this fear that was different than anything I had experienced in my life thus far. I didn’t want to talk about it… it was too much.
Mark came to the ultrasound appointment with me. We were both so nervous. The last time I had been there was to see our sweet Henry in the womb. Definitely a different experience this time. The ultrasound tech – who was the same tech we had during my pregnancies – eventually ended up telling me to relax. “It looks like a hematoma from a sports injury. Definitely not something to be overly concerned about.” Okay… deep breath.
I then went to the surgeon my primary care doc recommended. He confirmed that it’s likely a hematoma. I was told to watch and wait for 6 weeks. Despite not having any real sports injury, I do work out at Orangetheory 4-6 times per week and they thought that my fruit-pit of a lump was likely from a torn muscle. A hematoma should go down in size, so we’d wait and reevaluate.
After 2 or so weeks, I started to feel what seemed like another lump. I called and they told me to keep watching. By the next week, there was definitely another. Of course, I couldn’t get back into my doc for another week or two, but when I did, we began a new little journey.
There was in fact another and it was time to retire the hematoma theory and move on to the “zebra”… the rarity. My doc scheduled me for a CT scan. I was back to panicking. I spoke to a friend’s dad who suggested it might be a Schwanoma. My doctor had listed everything from a sarcoma to breast cancer. Nothing was off limits.
There was lots of waiting only to find out that the CT scan was inconclusive. Next step, needle biopsy. I’m going to be honest, I was not overly concerned about pain from this and was VERY unpleasantly surprised during and after. I assumed it was like a shot. I was wrong.
I had driven myself to the doc and met my husband there. I called him on my way back home and all of a sudden, the pain and overwhelming emotion hit. I had to go. All I could do was just drive. I had to get home, crawl into bed and just be in darkness.
My doctor had told me that the needle biopsy had something like a 92% diagnosis rate. No surprise that after waiting the weekend for results, I was told that the results came back inconclusive.
The next step was surgery. For someone who lives in the black and white, I was really stuck in grey. So much unknown. So many people telling me I would be okay, that it was probably nothing, that I shouldn’t worry… but me knowing that nobody knew how it was actually going to end up.
The surgery was hard for me to swallow. My surgeon would go in… he would perform a biopsy and send it to the lab while I was under. Depending on the results, he would either leave the tumor in, remove the tumor only, or do a wide resection, removing the tumor and healthy muscle and tissue. I would get to find out upon waking up.
The whole thing was so surreal. I got to the hospital with Mark on March 21, 2019, first thing in the morning. Mark insisted on taking pictures and of course, got a good laugh out of me…
Then, my parents came. In pure dad-form, he was cracking jokes, making me laugh, distracting me. Maybe throwing in a few of his, “I totally know how this goes” comments because my dad knows everything. Yes, I’m being sassy. Then, my MIL came and I instantly got choked up. I pulled it together until my surgeon came to get me. Then, as I got wheeled away, I couldn’t help but cry my little eyes out (and warn the doc not to say anything scary or weird while I was under).
I got into the surgical room, still crying. They asked me what kind of music I wanted to, which totally threw me. I think I said something like “folk pop music,” which in hindsight makes me laugh. I have no idea if music ever played. Next thing I know, I was waking up in recovery.
When I came to, I was told that they removed the tumor and just the surrounding healthy muscle/tissue… not a wide resection. Okay, good! The tumor was likely a desmoid tumor, which would be confirmed when the final biopsy results came in on March 25th. A desmoid tumor is a rare (2-4 people per million) sarcoma… it is typically not considered cancerous because it does not metastasize to other areas of the body; however, it is locally malignant and seems to have a high recurrence rate. My surgeon made what I believe to be a good judgement call… he preserved my healthy muscle and tissue, but as a result, left 50% positive margins (aka 50% of the sides that were touching the tumor still have microscopic traces of desmoid cells).
I was released from the hospital the same day as my surgery. To be honest, I’m still surprised by that. I’ve had two c-sections and the pain from this surgery topped them both exponentially. Everything now seems like a blur, but the pain was just terrible. Mark would have to lay me down and lift me up to go to the bathroom… in fact, he even had to pull my pants off and put them back on for me. Lovely, huh? I could barely walk and was most definitely not getting out of bed.
The next three weeks are a bit of a blur for me. I was back in my reclusive state. I was hurting and I was scared. I had a very hard time talking about what was ahead and talking about the diagnosis in general. I was emotionally unstable, which was so foreign to me. I’ve always been more of a “stuff the emotions down” kind of person, but here I was bawling my eyes out over the smallest things, calling my parents in sobs… just unrecognizable. That was the hardest part. But the light was my amazing husband, our babies and our families and friends who legit kept us together.
But then, a little light. We found the Desmoid Tumor Research Foundation and they happen to be hosting a patient meeting in mid-April. Our families urged us to go, which honestly helped a lot. I was at the 3.5 week mark when we went. I was still sore, but feeling way better. And mentally, I was starting to “get a grip.” I actually had to be in Charlotte for a work convention earlier that week, so I met Mark in sunny California for the conference. We stayed with his family who lives out there. We spent a full day exploring San Francisco and a full day not really thinking about my diagnosis. Just being us. It was perfect.
Then, the next day, we had an amazing conference. We were able to talk with docs who specialize in desmoids and get answers to our specific questions. We left feeling informed and empowered.
When I got back to Wisconsin, my care started to transition from general surgery to oncology. Again, that was a bit of a pill to swallow. It’s just scary. I met with a geneticist who did full genetic testing to make sure I didn’t have FAP, a genetic disorder that can cause desmoids. I met with an oncologist who ordered my post-surgical MRI and talked to us about options should my tumor return.
I’ve since had one scan, which lasted 2.5 hours!! Ugh. The results are decently irrelevant until I have a second scan. After my surgery, I had an apple-sized hematoma. It has gone down now, but I still have what they think is a hematoma or seroma and scar tissue. Whatever it is has gone down to the size of my original tumor. Gotta love that, right? Perfect for my paranoid mind.
I will have my next scan in August. At that point, we are hoping to see that the “indefinitive” mass has stayed the same or – hopefully – gone down in size, confirming that it is truly just the after-effects of surgery. If I have a “clean” scan,
Assuming no tumor, I will continue to have 2-4 MRIs per year to monitor and make sure I remain tumor-free. If the tumor returns, we will look at cryoblation, which essentially freezes the tumor cells, chemotherapy, and/or radiation.
BUT, for now, I live. I have taken my head out of the sand and resumed to normal living. Things are good. I feel good. I still get pains at the tumor site, but I am back to working out and just all around normal life. Every so often, I start over thinking things, but 99% of the time, I am good and I am grateful. This will not kill me. And, I hope that what doesn’t kill you makes you stronger!