‘Crazy’ Misdiagnosis: Doctors Tell 29-Year-Old Woman She’s Entering Menopause – It Was Rare Cancer

Hindmarsh, now 31, said she also experienced loose bowel movements along with her other strange symptoms.

“I was extremely fatigued and when I went to the doctor, it was suggested that I was going through perimenopause at 29 years old,” Hindmarsh explained in a recent interview, according to the Metro news outlet.

Perimenopause is the transition women experience into menopause, which is when a woman’s body stops having a period and her ovaries stop producing hormones, according to the Centers for Disease Control and Prevention.

Menopause typically happens between 45 and 55.

Meanwhile, Hindmarsh’s mom unexpectedly passed away the previous summer. The tragic and emotional event left the South West Englander thinking her symptoms could be due to the grief she was feeling.

Now, the mom of two is sharing her story to spread awareness for neuroendocrine carcinoid tumors (NETs) and hoping to inspire others to keep pushing for answers when something doesn’t feel right.

“I've had symptoms since 2019 and I was passed from pillar to post. Before the [COVID-19] pandemic, it got worse, and I wasn't doing well,” she said,

Hindmarsh continued, “Then the pandemic hit and I felt like I didn't want to waste anyone's time by going back to the doctors.

“But then … my symptoms started to get worse and I had a sort of heart murmur, which I put down to the stress and anxiety of losing my mom.”

It wasn’t until about two months ago that Hindmarsh decided to see a doctor when her symptoms worsened.

The visit led her to undergo various tests, including a full abdominal MRI. About 24 hours later she was informed there were some problems with her appendix and lower bowel, and they needed to be removed.

Nearly two weeks after surgery, she was told the true reason for her problems.

She was diagnosed with late-stage neuroendocrine carcinoid tumors (NETs). NETs are a group of abnormal tumors that start in specialized cells in your neuroendocrine system, according to the National Cancer Institute.

“It's been really overwhelming,” she added, saying that she wasn’t able to have her husband or family with her for support because of the pandemic.

She ultimately had three-quarters of her bowel removed and expects to have more treatment.

Despite the challenges that have been thrown her way, Hindmarsh remains optimistic and takes “each day as it comes,” noting she no longer has heart murmurs and intense sweats following surgery.

“It's scary to think that it's because my body was essentially going into overdrive, and it's crazy that women are quite easily put into brackets where our symptoms are put down to hormones or the menopause,” she added.

Commenting on the GoFundMe page that was set up for her, Hindmarsh said she wants to raise awareness for others, but she does hope the fundraising can help her with the bills during this tough time.

“It's scary how easily these things can be misdiagnosed and people have died from this cancer,” she said.

“I can't stress enough that you're never a nuisance when trying to get help because that's what I thought, and it could have been caught in 2019 and I wouldn't have had to go through all the symptoms.”

What Are Neuroendocrine Tumors?

Overall, neuroendocrine tumors (NETs), are a group of uncommon tumors that start in specialized cells in your neuroendocrine system, according to the Cleveland Clinic.

These cells combine the traits of nerve cells and hormone-producing endocrine cells. They link your endocrine system which manages your hormones and your nervous system.

"These [NETs] are brain and hormone-related cancers," Dr. Renuka Iyer of Roswell Park Comprehensive Cancer Center previously told SurvivorNet.

Dr. Iyer specializes in neuroendocrine cancer and is the co-director of the Liver and Pancreas Tumor Center.

"That's one thing that's different about this disease, is the fact that it can produce hormones. Some [NETs] produce hormones like insulin,” she added.

Dr. Iyer shared some of the basics about NETs:

• Neuroendocrine tumors are rare.
• NETs are most commonly found in the gastrointestinal tract.
• Because of their hormone production, they can be found anywhere.
• They're not as easy to diagnose as other diseases, so that can be a challenge. In fact, Dr. Iyer says, "The average patient sees 7-12 doctors before their NETs are properly diagnosed. Most people think they're gallstones or related to the appendix."

Improvements in diagnosing the disease has been helping patients.

Dr. Iyer specifically mentioned how the NetSpot scan came out within the last 12 years to detect these cancers and created a better method for finding these tumors.

“With better ways to find them and measure them, it is helping to move the field along,” Dr. Iyer said.

Be Pushy, Be Your Own Advocate… Don't Settle

Treatment for NETs primarily includes surgery, chemotherapy, and radiation, according to Dr. Iyer, who also noted that surgery is the number one preference for treatment, when possible.

“Even if it has spread if it is at stage four it can be surgically removed,” she added.

Drugs can also be a good option. Dr. Iyer says that drugs used to block the hormone signals and slow the cancer spread are effective.

“We used targeted agents, targeted radiation,” she explained.

“Radiologists have options to offer where they can burn these tumors or put other particles in the liver to try to attack [the tumor].” (The most common type of NETs are found in the liver.)

What Are Perimenopause Symptoms?

At first, doctors thought Hindmarsh was going through perimenopause, as she was having severe sweats and abdominal pain. However, despite her symptoms aligning with some of the symptoms of perimenopause, that wasn’t what was causing her pain.

The Mayo Clinic describes perimenopause, also known as the menopausal transition, as meaning “around menopause.” The clinic explains that it’s when your body “makes the natural transition to menopause, marking the end of the reproductive years.”

Women typically begin experiencing perimenopause in their mid- to late-40s, and the transition period usually lasts for four years, according to the Office on Women’s Health.

Women who are going through a menopausal transition, like perimenopause, may experience both subtle and noticeable bodily changes like:

• Irregular periods.
• Hot flashes
• Sleeping troubles
• Mood swings
• Vaginal and bladder issues
• Inability to conceive
• Changes in sexual desire or arousal
• Changing cholesterol levels

Coping With Grief

Grief is known to “come in waves” and never fully leave you after a loved one has died, says Dr. Scott Irwin, a psychiatrist and Director of Supportive Care Services at Cedars-Sinai Medical Center.

To grieve is to have fully loved someone, and that's a beautiful thing but the process of grief, as Hindmarsh went through, can be full of missing, longing, sadness, and even physical pain.

Coping with grief after the loss of a loved one, or after a diagnosis of a disease like cancer, can be helped by seeing a psychiatrist, counselor, or oncological social worker.

You don't have to suffer through your grief alone. Seek outside support when you've lost someone close to you.

Dealing With Grief After a Cancer Diagnosis

Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

---