I’m Jenna, a 36-year-old married mother of one son, and I have neuroendocrine cancer (NETs). It is a rare type of cancer, and 60% of the time, once a person is diagnosed it has already advanced to stage four. I was diagnosed at 34 years old and have been living with this disease for a little over two years now.

For about two years before I was diagnosed, I was having what I called “stomach attacks”- they would coincide with my monthly cycle (I also have stage four deep infiltrating endometriosis). A “stomach attack” would be abdominal pain, diarrhea, nausea, and often times vomiting. I had bloodwork and an MRI done, and everything came back as normal. My doctors chalked it up to being related to my endometriosis and irritable bowel syndrome (IBS). I was treated with IBS medications which seemed to help, until they didn’t.

It was September of 2023, and I was having an especially bad menstrual cycle that month. My period eventually ended, but the abdominal pain and cramping did not go away. It got so bad that it was keeping me awake at night.

After a few days of not having a bowel movement, not eating much, and nausea, my husband convinced me to go to the ER. I’m thankful he did.

I had a CT scan done which revealed a bowel obstruction, a mass in my small intestine. Given my history with endometriosis, the doctors were pretty convinced it was an endometrioma due to its location. I had emergency surgery the next morning- an open hemicolectomy and an appendectomy.

After three days in the hospital, I was discharged home only to get a notification from MyChart saying my pathology report was back. My surgeon called me and said I needed to come in and see him to talk about the pathology report. I have access to MyChart, so I read the pathology report and started googling. The report came back as a grade 1 neuroendocrine tumor in my small intestine and on my appendix. Google said cancer. After a deep dive down a rabbit hole on Google and a ton of anxiety later, the appointment with my surgeon came. Sure enough, cancer.

He referred me to my oncologist (whom I am still a patient of today) in October of 2023. After a lengthy appointment, I was told I needed a dotate PET scan- it’s a special radioactive scan specific for neuroendocrine tumors. He put in a stat order, and before I knew it, I was having my PET scan done. My results came back fairly quickly.

I remember my oncologist calling me and telling me, “Unfortunately, the cancer has spread to your liver- now making your stage of cancer, stage four.”

He said I needed surgery to remove the parts of my liver with the biggest tumors, and to have the smaller ones blasted with a type of microwave ablation. In December of 2023, I underwent my second major surgery- an open liver wedge resection and ablation along with gallbladder removal. The surgeon removed what they could, but my liver was still full of neuroendocrine tumors around the size of a grain of rice. Another three days in the hospital and I was discharged home to recover.

In January of 2024, I started on an every-28-day injection to help control the neuroendocrine tumor growth. In April of 2024, I underwent my third major surgery- a total hysterectomy to help control the endometriosis. By September of 2024 I had developed carcinoid syndrome, which often affects people with NETs in their lungs or digestive system. Carcinoid syndrome symptoms include diarrhea, flushing, nausea, vomiting, and wheezing. I was started on a medication to address those symptoms.

I just finished my fourth and final round of a type of targeted radiation therapy called PRRT, which is Peptide Receptor Radionuclide Therapy– a type of radioisotope therapy. These treatments use radioactive medicines to treat some types of neuroendocrine cancers. Unlike typical radiation, it is administered through an IV. The side effects were brutal. I’m still dealing with the side effects from it.

Now, I’m 36 years old and I take 15 different medications every day. I have a specialist for everything. I see a psychiatrist monthly and a therapist weekly because dealing with this has been challenging. And I’m afraid that’s putting it lightly. All of the appointments, the scans, the bloodwork, the needles, the ER trips. I collect hospital bracelets like candy now. I can’t make it through a day without a nap, or the fatigue just becomes too much.

I went from being a totally normal 30-something-year-old mom and wife that was full of life and energy to a 36-year-old mom and wife with the body of a 90-year-old.

My husband has been my biggest support through all of this, and I couldn’t do any of this without him. Parenting with cancer has been something that has broken my heart. I realize that our son probably doesn’t remember me before I got sick. He was only 4 when I was diagnosed.

The biggest advice I have for anyone newly diagnosed is DO YOUR RESEARCH and find an NET specialist. Advocate for yourself, and if any doctor tries to medically gaslight you, call them out immediately. I had to learn to advocate for myself, and a lot of times now I go into appointments with more knowledge of my disease than the doctors I am seeing. Stand up for yourself. Your symptoms are real. Your feelings are valid. My hopes are to see more awareness brought to neuroendocrine tumors and neuroendocrine cancers.  If my story can help just ONE other person, I’ll know what all of the agony has been for.