This page is to keep all of our wonderful friends and family up to date on Morgan's health journey. Keeping everyone informed has started to become a job in and of itself, and we really wanted a central place to keep everyone up-to-date while not putting more stress on Morgan. I will be posting updates in here as we learn more on this crazy journey. Thank you to everyone for your support, it means the world to Morgan!
Morgan's medical journey has been going on since she was 15. A wonderful story was posted in October 2016 in The Northwoods River News by Kayla Breese (http://www.rivernewsonline.com/main.asp?SectionID=9&SubSectionID=78&ArticleID=74525&TM=59393.29
) that does a very good job at explaining her journey that I'm going to repost here:
Morgan Benedict, 33, has been battling various types of cancers since she was in her early teens.
In the spring of 1998, when she was nearly 16, Benedict's mother took her to have a mole removed from the back of her neck and the doctor sent it in for testing.
"Thank God he did because it came back as skin cancer," she said. "I was quickly referred to a dermatologist and sent down for further evaluation. I was introduced to my oncologist, Dr. Rezazadeh, and he set up a care plan for me."
During the following years Benedict had more skin cancers removed, which came back as basal cell carcinoma.
In the fall of 1998, Benedict visited her gynecologist. Shortly after that appointment she received an urgent call to come in right away.
"I was diagnosed with cervical cancer and went through a series of surgeries in the months and years to follow," she said. "By the time I turned 22, I had gone through multiple surgeries and several rounds of treatments."
By the time she reached her early 20s she had spent nearly a third of her life battling cancers, seizures and migraines. Her doctors grew increasingly concerned when the skin cancers became frequent and she was sent to a geneticist.
After more tests and scans, doctors discovered she has genetic disorder called Basal Cell Nevis Syndrome or Gorlin's Syndrome.
"They explained this disorder was caused by a deletion in the gene known as the PTCH1, and how the main symptom of this disorder was multiple basal cell cancers," Benedict said. "It was also linked to several other cancers including breast, ovarian, and many others, but when the results came back six weeks later they were negative/inconclusive."
A few years later, she was blessed with her son Brody, now 9, and her daughter, Keeley, 8.
"Despite tough pregnancies, this time was the most stable my health had been," Benedict said. "I had my first normal OB/GYN exam since I was diagnosed 10 years earlier and my skin cancers seemed to subside a little."
However, it didn't last long. She was hospitalized for unexplained drops in blood counts, doctors found atypical growths in her intestines, uterus, colon, and the base of her skull. She couldn't digest food properly, her blood sugar would drop, and her seizures worsened.
Unable to find an explanation for the seizures and other symptoms, the neurologist on call ordered an antibody test done through Mayo Clinic in Rochester.
"The test looks for specific types of antibodies that your body produces when certain types of cancer are present," Benedict said. "The type of antibody that is found tells the doctor which cancer to look for."
It took two months for the test to come back and it revealed something unexpected, Benedict said.
"I got a call saying the results from this antibody test had come back positive, but there was an antibody found that was not specific to any of the types of cancers I had and I needed to see a doctor right away," she explained. "Once again I found myself doing steady tests and scans just waiting for the cancer they knew was present to show itself."
She saw another geneticist, who also thought it was Gorlin's Syndrome, but had no explanations for the other issues and lack of other symptoms associated with the disorder. They ran the test to see if it was Gorlin's but it came back negative.
Frustrated, the doctor asked to run another test on the PTCH1 gene and a new genetic screening called CancerNext panel through Baylor University.
Two months later the results were in.
"My geneticist explained that everyone has two sets of genes, one from mom and one from dad," she said. "Sometimes these genes have mutations that can cause issues. These mutations can be a duplication within the gene or a deletion within the gene. He went on to say that typical Gorlin's Syndrome has a deletion in the PTCH1 gene. I had a duplication in exons of the gene they had never seen mutations in before. A duplication within the PTCH1 gene was only ever seen in one other person, but never in the same exons as mine. To make it even more confusing he said the duplication was mosaic. Mosaic is where only some of the genes have the mutation. In my case, in 2012, only 25-30 percent of my cells had this mutation. The doctor) explained to me that I had positive results for a mutation in a gene known as the ATM gene."
At the time the technology could only confirm a mutation, but not if it was a duplication or a deletion within the gene, she added.
"The lab confirmed that they ran the test three times to eliminate the possibility of error on their part and they were confident in saying that my ATM gene has both a duplicated and a deleted portion within the exons of the gene. The results were unique to only me and the questions on what the medical implications of this would be continued to climb."
The doctor told her to go home and process the information. She returned a week later overflowing with questions.
"I asked him what this all meant for me, for my kids, my future plans. I ask him if I needed to plan for retirement," she said. "He explained that the progressive worsening of my skin cancers is explained by the mosaic mutation and the older I get the worse it will get. From age 16-22 I had greater than 10 spots but then at age 26, was seeing four spots every eight weeks and had cleared the 300 mark. He said if I took care of myself maybe 10 years. I was numb but remember thinking how much I appreciated his honesty, that for the first time he had given me something no one else could: answers."
In the ensuing months she had surgery to remove growths around her uterus and intestines and to remove her appendix.
In autumn of 2014, doctors found a growth in Benedict's left breast. With all the complications she was taken off work permanently.
"By July 2015, I had the first of three surgeries for a full double mastectomy," Benedict said. "Because of complications, my second surgery didn't take place til December 2015, and I am still waiting to be cleared to do the third. My doctor will not clear me for the third surgery until my full hysterectomy is complete (it was performed Oct. 3) to remove the growth found on my ovary."
At the age of 33, Benedict has had five different cancers and currently sees 16 specialists.
"I have people say all the time, 'you are a fighter, you will beat this,' and I have to say to them, 'no I won't, I will fight but I won't win,'" Benedict said. "See most cancer patients are fighting an invader, a parasite in their body that they can fight, beat and expel from their body. My cancer is part of me, it is woven into my DNA, it is not something I can just heal from. I will never have the grand honor of being a cancer survivor, but I am finding the silver lining in always being a fighter."
"The cancer is just going to come faster and I will always have to fight harder," she added. "Also, with both the PTCH1 gene and the ATM gene not working and them both normally being the genes that would repair damaged cells after radiation, I can't ever have treatment for cancer again either. In simple words, a malignant diagnosis is untreatable for me. This is a terrifying reality but it is a constant for me in my ever revolving door of questions."
Benedict is using her unique experience to help others who are terminally, chronically or temporarily ill.
"I get to spend more of my life learning to appreciate what I have to fight for," she said. "I can easily relate to people who are ill either chronically, terminology or temporarily. I can help them identify their feelings and get them to the point where they can reinvent themselves sooner and appreciate life from their new found perspective. I have friends with everything from cancer to MS to lupus to others with major genetic disorders. I have guided husbands through supporting their wives and chronically ill people through explaining their lives to their parents. This kind of things makes me feel like this may just be worth it. It gives me a purpose."