I didn't know that was an option...
Updated: Sep 21, 2018
That’s probably the most common response I get from people when I share that I have Cancer of Unknown Primary. Fun fact: I didn’t either! Up until recently, I lived in some sort of utopian world that meant when you were diagnosed with cancer, you were told what type. But little did I know, this happens. It doesn’t happen often, but it happens.
So there is a long version and a short version. I’m just finding time to get around to writing this down now, as an outlet, so I don’t know if I have time for the long version. Maybe one day I’ll do a full recap, but I’ll spare you all now, and instead I’ll run down the short version.
In May 2018 I went into the emergency room with stomach pains and after multiple test, expected to be told I needed to have my gall bladder out. There were enough tests and follow-up tests that I was able to deduce my pain wasn’t a simple “Rest and you’ll be better”. After a full day in the ER (with non-stop vomiting from my stomach pain), a doctor finally came to tell me that the sonogram and CT scan detected a blockage in my small intestine. I was admitted and observed for a few days before they decided to move forward with removing the blockage.
Now I’ve had 3 c-sections. Surgery doesn’t scare me. I wasn’t really unnerved by this. The doctor told me he would be attempting the procedure laparoscopically, but there would be a chance that if he was unable to complete the surgery that way, he may have to do a full incision. Again, I wasn’t too upset by this. When he then told me that there was a chance that he may not be able to reconnect my small bowel together, and I would have to have a temporary stoma, or colostomy.
That’s where my worry landed.
So much so that I believe it was the first question I asked when I was brought out of anesthesia. Not my first statement, mind you. I believe that was more along the lines of “More drugs please!” But my first question.
Fortunately, I did not have a stoma, and I awoke with only four tiny holes from where the doctor was able to perform the surgery laparoscopically.
However, after surgery, the tone in which doctors were talking to me began to change. What they ended up removing wasn’t so much a blockage in the intestine as it was a tumor that was growing in and out of my intestine. While in there, they also found what they called ‘implants’ in my abdominal wall, which they also took a small sample of for biopsy.
It was the first time the topic of possible malignancy came up.
And then the topic of probably malignancy came up.
But no one would say certain malignancy.
I stayed in the hospital for a week, and left with no answers.
A second visit to the ER and another few days in the hospital 11 days post-op due to some complications from the surgery, and still no answers.
On my discharge day on the second visit, I point blank asked a doctor, “Is it cancer?”
“Yes. But we are unable to determine the type of cancer.”
(Moments later, as I left the hospital, I saw for the first time I had actually been admitted to the oncology ward - BEFORE anyone would tell me it was cancer!)
This is where I’ll fast forward and give you the birds-eye view. This hospital was St. Agnes, a hospital located in southwest Baltimore. The pathology department at St. Agnes was unable to determine the type, and escalated the samples to Johns Hopkins. Johns Hopkins has a reputation of being the best of the best. The best hospital in the world, some would say.
Johns Hopkins could not determine the cancer type. They returned their inconclusive findings to St. Agnes, with the recommendation of additional lab testing elsewhere. St. Agnes sent out for these test, and these came back inconclusive.
During all this time, I’m doing additional testing, seeing doctor after doctor, and being told again and again that no one has seen anything like this.
That’s me – a medical goddamn miracle. Just not the good kind.
I hit a wall, and was frustrated to no end at the lack of treatment anyone was willing to give me. I get that chemo and radiation are cancer specific, but during all this back and forth and additional testing, I have cancer in me, just growing. One doctor I saw suggested that if I continue to not get answers, that I should consider visiting Memorial Sloan Kettering or MD Anderson, which are both cancer specialized hospitals. MD Anderson is in Texas, whereas MSK is in New York City and New Jersey, so my obvious geographical choice was MSK.
I began visiting MSK, and was again told that they had never seen anything like this. Which is exactly what you want to hear from the hospital that specializes only in cancer. Don’t get me wrong, I actually love my doctor at MSK. Dr. Gu – he’s amazing. He’s taken on my case with gusto, and at the very first visit, sent me to see another doctor immediately to get me scheduled for another biopsy.
So a PET scan and two biopsies later at MSK, and we can confirm my cancer is advancing. At a concerning rate, now in my upper right lymph nodes.
And that’s where I am. I have no conclusion to this post, as I have no conclusion to this story. I’m supposed to talk to Dr. Gu this week about finally scheduling treatment.
But for now, as I have done for the last 109 days, I wait.