Cholangiocarcinoma SURVIVOR
By Kathi and Andrew Dyal
Andrew and I attended the same high school in LaGrangeville, NY. We ran in the same circles but didn’t really interact with each other until our lives reconnected in a way neither of us could have anticipated.
Diagnosis:
UNC Hospital – It was in April of 2022 that Andrew was initially diagnosed with hepatocellular carcinoma with only one lesion, 4.9cm LR-5, in segment 2. The secondary diagnosis was cirrhosis of the liver.
We were excited as that meant we would be put on the transplant list! In June 2022, Andrew received a Y90 procedure at Vassar Hospital in NY, which was considered successful, and we all could breathe a little more easily for a while. This was recommended as targeted radiation directly into the tumor. We learned that radiation begins and continues to work after completing the course.
September 2022, nine days after we were married, Andrew ended up in the emergency room as the ascites he had in his abdomen became septic. He spent over a week there and is still on ciprofloxacin today. February 2023, Andrew was re-diagnosed with cholangiocarcinoma when they biopsied the ~3cm liver lesion in segment 7/8. This meant we were removed from the transplant list and were told this cancer was aggressive and terminal. This was completely devastating, and we began to prepare for the worst. That’s kind of not true. We actually lived in denial and refused to accept it.
Treatment:
In April 2023, Andrew received a second Y90 procedure at UNC Hospital, which again seemed successful. Andrew and I took his care into our own hands and contacted MD Anderson in Houston, TX.
In May 2023, we began our journey with MD Anderson. MD Anderson, in conjunction with Houston Methodist – was the only hospital in the USA we could find that would perform a transplant on a patient with cholangiocarcinoma as long as it stayed put and didn’t spread.
In September of 2023, Andrew lost vision in his right eye (NP malignant neoplasm eyeball). A subsequent scan showed that his cancer had metastasized to his peritoneal cavity/bone/muscles/lymph nodes/lungs, and possibly thyroid. By October, Andrew’s AFP score rose to 872. We were sent home, put on hospice, and were told he had maybe a few weeks or a couple of months. They had fitted his mold and were ready to do radiation on his eye in Houston – however – they felt it was not worth doing, considering the time we had left.
This was end Stage IV, metastasized cholangiocarcinoma. Within weeks of being home, Andrew felt he could start to see. The ocular oncologist at MD Anderson cautioned us that he was most likely not regaining his vision—it was just fluid moving around.
November 2023, back in NC, we were referred by MDA to the Ocular Oncologist at Duke University. We would be seeing (and are still) him every few months. By our second visit – They were in awe. The tumor behind his eye had first grown – then disappeared. The Oncologist showed us scans (included) – and told us that Andrew’s eye appeared to have direct radiation – the tumor was gone. Andrew never had radiation to his eye. The oncologist called it ‘spontaneous regression’. The stuff miracles are made of!
In January 2024, many of the lesions were metabolically decreasing—all on their own. There was no chemo, additional radiation, immunotherapy, supplements, or change in his diet.
In March 2024, another PET showed no growth for the old tumors. They were still decreasing in size and mass – but did show a few new, small tumors formed between his spine and abdomen.
MD Anderson set Andrew to receive 15 courses of directed radiation to those new tumors. By the second week of radiation, those tumors had already begun to shrink. This was in March/April 2024. June 1, 2024 – Andrew had another PET scan, and it was clear of any active lesions. He is cancer-free. His AFP as of July 5 was 6.7.
No Evidence of Disease:
Usually – if someone has metastasized cancer – they will require the person to remain cancer-free for three years before re-presenting to the transplant board.
Due to Andrew’s immune system being the incredible machine it is – they said that if he remains cancer-free for one year – they will present him to the board for a transplant.
This is our goal. Andrew needs a new liver. Until that can happen, we will pray, laugh, and love, and we know how very blessed we are.
Support System:
In terms of support, we have a very tight circle here in my Bible Small Group. Neighbors and friends have all jumped in anytime we need assistance. I have my own ‘medical team’—meaning three of my closest friends since middle/high school are all in nursing, and they are with us every step of the way. Andrew’s folks are still alive (92 & 88!!!)— and help us in any way they can.
Thankfully, for most of our travel back and forth to Houston, one of our children still lived with us and could watch the dogs. We traveled back and forth to Houston, TX, Durham, NC, and Wilmington, NC (the local oncologist who works via direction from MDA) every month.
It’s small things that may be overlooked. Our neighbors drop in to check on us. Some bring us baked goods, some just to visit—and it’s a regular thing. I think having faith in the Lord has personally been carrying me through. Andrew knows and feels the support and love from our families and friends. We are blessed.
I can definitively say we have been living on pins and needles every day. It is a true emotional, physical, and mental roller-coaster. Remembering that we both had our previous spouse pass away, I am sure you can imagine the emotions and thoughts that live rent-free in our minds.
Future Outlook:
Never count yourself out – prayer and positivity will carry you. Live each day. Love each other and our family & friends with no limits. Laugh. Get in the picture/video. Rejoice in the little things because they do matter. Just take things ‘one blink at a time’ – because as long as you get through one blink, chances are you can get through the next one – as they say – ‘you’ve made it through every bad day so far…’
Fun Facts about Kathi and Andrew:
Andrew and I attended the same high school in LaGrangeville, NY – he graduated in 1989, I graduated in 1990. We ran in the same circles but didn’t really interact with each other.
We have 5 kids between us, aged 26-20, all adulting independently in different cities/states. In age order: Elizabeth, Knox, Brendan, Patton and Andi
We live in Southport, NC, with our four dogs (yes. FOUR), about 3 minutes via golf cart to the waterfront. Also in age order 😊 York, Ella, Pepper and Louie.
In ‘normal’ times, we were learning to play pickleball, we love board games at home, cooking. We are both passionate about our families and our animals. My faith in God is very strong, and Andrew is starting to attend service with me!
