It’s been 3 years and 3 days that I was diagnosed with Inflammatory breast cancer stage 3b. After 18 rounds of chemo, 36 rounds of radiation and over 30 hours on an operating table here I am again.
In February I felt something outside of my stomach bulging out, March still there. I called my oncologist in March and said something is wrong, I immediately went in for a CT scan. CT scan revealed a rectus sheath mass with appearance strongly suggestive of a rectus sheath hematoma.
A rectus sheath hematoma: is an accumulation of blood in the sheath of the rectus abdominis muscle. It causes abdominal pain with or without a mass.
After my scan, the plan was nothing. It’ll go away on its on.
2 weeks ago, I noticed it had gotten larger. I can see it and feel it on my stomach area. I called my oncologist again and she said another CT, CT said no, get a PET scan.
PET: Positron emission tomography is a functional imaging technique that uses radioactive substances known as radiotracers to visualize and measure changes in metabolic processes, and in other physiological activities including blood flow, regional chemical composition, and absorption.
Completed PET—it lit up like someone sent a match inside my body. I saw the visual of this, it’s WILD. I knew what that meant for me. However, I just prayed whatever it what was manageable.
CT/PET scans are posted immediately to your digital chart which I manage my care through it. The results to my PET posted last Friday. It sent me in a world wind of GOOGLING along with my trusted friend, Jesse. At one point we just stopped googling because nothing was making sense and nothing was consistent with this diagnosis. My oncologist was out until today, so I begged for her colleague to call me to explain. He did, and he was incorrect in his wording. Or shit, maybe I heard what I wanted to hear—I don’t know. The weekend went by and stayed on google trying to figure out if this is cancer. Again, nothing consistent.
The diagnosis is an Desmoid tumor on the abdominal wall. It’s sitting right on that rectus sheath. That rectus sheath is a muscle that helps you get up and down. So when I do that I feel that tumor straining that muscle.
To answer the question: is it cancer, yes. However, it won’t get into my blood, it’s a low-grade cancer meaning it won’t metastasize (spread to other areas in the body).
How will they treat it: right now with nothing. They want to see how much it’ll grow over the next 2 months. It grew from March to June as I knew it did. So, now we have numbers to compare it to and then new numbers in August. Then we decide to surgically remove if it’s growing. My fear is, this is the gateway for colon cancer because I do have chek2 mutation and it’ll grow to a size that makes it surgically impossible to remove. That’s another blog (chek2)—but my oncologist is aware and will now do CT scans every 6 months now that I have a Desmoid tumor to justify the scans. But the Desmoid tumor will be monitored every 3 months for growth. And my oncologist will do CT scans every 6 months.
I’m in the process of getting a second opinion at MD Anderson hopefully at the end of June.
I’m ok with this, because it could of been much more. Even though I still don’t know how fast this thing is growing I do know it’s manageable.
I need you all to know if I wouldn’t be so self aware of my body, that hematoma they labeled me as in March would be just that. And I’d have cancer and not know. I felt the growth, and I told my oncologist. You have to know your body especially if you are in a predisposition to cancer reoccurrence. Having cancer will make you feel stupid because some doctors will not spend the time to educate you and sometimes you don’t know what to ask.
I’m always available to chat to help anyone as it’s therapeutic for me.
