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On November 15th, I was diagnosed with Neuroendocrine Cancer in my rectum. I've struggled with how to share this information with everyone. I want people to know, but I also don't know how to tell people. After a lengthy discussion with my husband last night, I feel like keeping this information to myself is not helpful for me. He encouraged me to let people know. It's ok to share and it's ok to ask for support from my friends and family.
This feels a bit strange to address through a blog post, and I’m
honestly not sure if this is the most appropriate way to relay this
information. However, after giving this a tremendous amount of thought, I figured this would be least stressful and most effective way to share this information with loved ones.
A month ago, during an endoscopic GI procedure, my doctor
found several polyps and a tumor in my rectum. The polyps were removed during the procedure, and the tumor was only biopsied. Unfortunately, the tumor was too deep into my rectal
wall to be fully removed. The polyps, along with the biopsy from the tumor, were sent to
pathology.
The pathology results arrived a week later. Two polyps proved to be insignificant. One polyp was a pre-cancerous tubular adenoma.
Thankfully this was removed during the scope. Had it been left in my body, it
would have eventually grown into rectal cancer.
Unfortunately, the biopsy from the tumor showed that I have
Neuroendocrine Cancer. Thankfully, pathology shows my cancer to be very slow growing. The area is small, which is good, and the cancer cells have a very low mitotic rate. But there are still some significant unknowns. As my doctor explained to me
today, we don’t know just how deep the cancer has grown into my rectal wall. We don’t know if it is in my nearby lymph nodes.
The first course of action
is surgery with the goal of removing any and all cancerous tissue from my
rectum. If all cancerous tissue is removed during surgery and there is no
evidence of lymph node invasion, further treatment may not be necessary.
I asked to meet with an oncologist for a second opinion. Last
week, the oncologist confirmed and supported everything that was said by my GI
doctor: it is cancer, it’s slow growing, and at this point, surgery is the best
treatment. Both my GI doctor and my oncologist recommended the same colo-rectal
surgeon, and both spoke very highly of him. Additionally, my oncologist
recommended that I see a genetic counselor for genetic testing, to rule out any
potential genetic component that has caused these polyps and this cancer to
show up. I will do genetic testing later this month.
Thankfully, a follow up colonoscopy has shown the remainder
of my colon is healthy. What a relief! It’s really the rectum that’s the issue. During my colonoscopy today, my doctor tattooed the tumor so that my surgeon can easily
find it. So I can now say I have a really wicked (and really expensive) rectal
tattoo inside my body!
Next week I will meet with my surgeon to discuss the surgery, recovery time, and further tests. I've been referred for a trans-anal resection of the cancerous rectal tissue. During surgery, the doctor will remove the portion of my rectal wall
that is cancerous, and will stitch me back together. This surgery will
determine just how deep the cancer has grown into the tissue, whether it is in
my nearby lymph nodes, and whether any additional treatment will be required by
my oncologist. The goal is to get clear
margins, and I am more than confident this will happen. The general consensus between my doctors, at this point, is that surgery will be the only
treatment needed.
Most importantly, I am going to be OK. I want to stress
this. This is not life threatening. I would be lying if I said I wasn’t completely overwhelmed though. I don't think I have to be dying to be freaked the f*ck out inside. This is going
to be extremely expensive for our family & we're already so damn stretched thin. But I'm rolling along, what else can I do? I'm making art every day. I'm trying to take it easy, I'm allowing myself to feel however I need to.
I'm extremely grateful that this was caught early. Most people do not have a colonoscopy until their 50's. I don't want to imagine what doctors would have found in the future, had this gone unchecked.
Again, I've really struggled with how to share this information with everyone. I went though about two weeks of wondering if telling people was even appropriate. But it's scary for me. It's still cancer. It's surreal, and it's ok to let my loved ones know how I am.
Neuroendocrine Cancer is very rare, and it's pretty interesting too. So I'm putting some links below in case anyone would like to read more about it:
https://www.carcinoid.org/
https://netrf.org/
https://www.netpatientfoundation.org/
Thank you for your love, support, and encouragement,
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