Advocating for Your Health Means Watching Out for Symptoms
- A pregnant woman, 28, with recurrent stomach pains and bloody stools, saw her worsening symptoms dismissed by doctors as hemorrhoids for months. It wasn’t until she continually pushed for a colonoscopy, she learned she had stage 3 colon cancer.
- During stage 3, the cancer has spread beyond the colon. She underwent a clinical trial using immunotherapy which uses the body’s immune system to fight the cancer.
- Amid treatment, she preserved her eggs in case cancer treatment impacted her fertility. Egg, sperm, and embryo freezing are common approaches to fertility preservation, but other options exist. Before undergoing cancer treatment, patients must speak to their doctors about fertility preservation if they wish to have a family in the future.
- Advocating for your own health can lead to better patient outcomes. Sometimes this includes going back to your doctor multiple times or seeking a second and third opinion from different doctors.
A young mother of two is recounting her colon cancer journey to spread a message of advocating for yourself. She endured several months of constipation and miserable visits to the bathroom only to be told she had a case of hemorrhoids when instead she was dealing with advanced colon cancer. Thankfully her persistence for solid answers led her to an accurate diagnosis and treatment.
“Go with your gut when you feel something is up with your body,” is the takeaway message from Kelly Spill, 31, who shared her colon cancer journey with “Today.”Read More
“They pretty much said they’re 99.9% positive it’s internal hemorrhoids…That sounded right to me as a new mom,” Spill said.
With her symptoms repeatedly dismissed it caused the new mom to question herself. So instead of focusing her efforts on her own health, Spill focused her attention on her new baby.
“I felt very exhausted, and it made me second-guess what I was actually feeling because I was being brushed off…When you don’t have someone listening to you, it’s really, really hard to continue to keep going,” she said.
However, as days, weeks, and months went by her symptoms of constipation and bloody stools only worsened.
“I was experiencing loss of appetite. I’d be really, really hungry, and then I would want something, I would take a bite and I wouldn’t be hungry anymore,” she explained.
Her doctors again simply told her to “lay off the spicy foods.” Then Spill found new hope when a nurse encouraged her to keep pushing for an answer that satisfied her.
“[The nurse] said to me, ‘I just want to say one thing: If you don’t find your answer here, keep searching. Keep going. You know your body best…That is something that has stuck with me from that day,” she said.
While up to this point, Spill was not diagnosed with colorectal cancer, her symptoms were indicative of the disease.
The most poignant signature of colon cancer includes a change in bowel habits. This may include constipation or diarrhea due to changes in the size or shape of bowel movements. A change in stool color, particularly black or tarry stools, can indicate bleeding from a tumor that lies deep in the colon.
WATCH: Colon cancer symptoms.
Other symptoms can be harder to pinpoint, such as abdominal pain and unintentional weight loss. Finally, some tumors bleed a small amount over a long period of time, resulting in anemia (low red blood cell count) that is picked up on blood work.
Due to her symptoms, Spill had suspected a colonoscopy, which screens for colon cancer, could help her quest for answers. During a colonoscopy, you’re prescribed a “bowel prep” which is a liquid you drink the night before the procedure. The prep acts as a laxative that causes you to have several loose stools before the procedure. Once your colon is cleared, the gastroenterologist can get a clear look inside your colon by using a thin tube with a light and camera attached. The advantage of getting a colonoscopy is it allows your doctor to remove precancerous polyps. A colon polyp is a small group of cells that forms on the lining of the colon. These polyps can grow into full-blown cancer if left untreated.
Dr. Zuri Murrell, a colorectal cancer surgeon and Director of the Cedars-Sinai Colorectal Cancer Center, previously explained the colonoscopy procedure to SurvivorNet.
“When we see a polyp, we actually physically take the polyp out through the colonoscope,” he explained.
“What does that mean? That means we basically put a wire through with a little bit of a little flange at the end and we pull the polyp out. Now, note there is no pain with that. Inside the colon, there are no pain fibers. So, there’s no pain,” Dr. Murrell added.
As Spill’s symptoms worsened, she thought to photograph her bloody stool to emphasize to her doctor the situation. Her new approach worked.
“She was like, ‘Oh, you need to get a colonoscopy, don’t you?’ And I said, Yes, 100 percent I need a colonoscopy,” Spill recalled.
Although Spill was in her early 30s, her symptoms called for a colonoscopy to rule out colorectal cancer. The American Gastrointestinal Association lowered the recommended initial age for a colorectal screening from 50 to 45. However, experts recommend screening earlier for some people who may be at an increased risk of developing colon cancer.
“We don’t know for sure why we are seeing earlier onset and death from colon cancer,” Dr. Heather Yeo, a surgical oncologist who specializes in colorectal cancers at Weill Cornell Medicine, told SurvivorNet.
More on Colon Cancer
Research published in CA: A Cancer Journal for Clinicians found the proportion of cases in people younger than 55 years old “increased from 11% in 1995 to 20% in 2019.”
“We know rates are increasing in young people, but it’s alarming to see how rapidly the whole patient population is shifting younger, despite shrinking numbers in the overall population,” cancer epidemiologist and lead study author Rebecca Siegel told Axios.
Research is ongoing to determine why younger people are being diagnosed in larger numbers.
“It is likely a combination of factors, including diet and genetics as well as access to care and some environmental factors,” Dr. Yeo added.
Spill’s colonoscopy finally brought her some answers which proved to also be a bittersweet feeling.
“I found out that I had a tumor…It was a very weird feeling because I knew at that point something wasn’t right. I knew it wasn’t going to be good. But I didn’t get upset until I left that room,” she said.
Eventually, Spill’s emotions got the better of her and she ended up crying in the parking lot after coming to terms she had stage 3 colon cancer. Stage 3 means, the cancer has spread beyond the colon to other parts of the body.
A cancer diagnosis impacts both the patient and their loved ones albeit differently. Most notably, a diagnosis brings with it a string of wide-ranging emotions from sadness to anxiety which can be fluid according to psychiatrist Dr. Lori Plutchik.
“The patient or person going through the stressful event should accept that emotions will be fluid. You may feel fine one day and then feel a massive wave of stress the next. It’s also important for those you look to for support whether that’s a therapist, friends, and family, or both to understand the fluidity of stress-related emotions,” Dr. Plutchik said.
If you are coping with a stressful diagnosis, SurvivorNet recommends checking in on your mental health. Your mindset impacts your ability to cope, and the added stress may require the assistance of a mental health professional. This could mean traditional talk therapy, medication, changing lifestyle habits like exercise and diet, or seeking out a support group.
Adding to Spill’s myriad of emotions, she and her partner were engaged to be married. Her diagnosis put a damper on their nuptial excitement. The young couple also had plans to have more children and the onset of cancer could impact Spill’s fertility. Luckily, her doctors gave her time to preserve her eggs in case cancer treatment impacted her ability to have more children.
WATCH: Family planning amid cancer.
Some types of chemotherapy can destroy eggs in your ovaries. This can make it impossible or difficult to get pregnant later. Whether or not chemotherapy makes you infertile depends on the type of drug and your age since your egg supply decreases with age.
“The risk is greater the older you are,” reproductive endocrinologist Dr. Jaime Knopman, told SurvivorNet.
“If you’re 39 and you get chemo that’s toxic to the ovaries, it’s most likely to make you menopausal. But, if you’re 29, your ovaries may recover because they have a higher baseline supply,” Dr. Knopman continued.
Radiation to the pelvis can also destroy eggs. It can damage the uterus, too. Surgery to your ovaries or uterus can hurt fertility as well.
Meanwhile, endocrine or hormone therapy may block or suppress key fertility hormones and may prevent a woman from getting pregnant. This infertility may be temporary or permanent, depending on the type and length of treatment.
If you are having a treatment that includes infertility as a possible side effect, your doctor won’t be able to tell you for sure whether you will have this side effect. That’s why you should discuss your options for fertility preservation before starting treatment.
Most women who preserve their fertility before cancer treatment do so by freezing their eggs or embryos.
After you finish your cancer treatment, a doctor who specializes in reproductive medicine can implant one or more embryos in your uterus or the uterus of a surrogate with the hope that it will result in pregnancy.
If you freeze eggs only before treatment, a fertility specialist can use sperm and your eggs to create embryos in vitro and transfer them to your uterus.
Spill’s Cancer Treatment
Spill was nervous about undergoing traditional cancer treatment which includes chemotherapy which uses cancer-killing drugs. It may also involve radiation therapy which uses high-energy beams such as X-rays aimed at cancer cells designed to kill them. Instead of chemo and radiation, she opted for a clinical trial that uses immunotherapy.
WATCH: Immunotherapy side effects.
Immunotherapy is a cancer treatment method that uses the body’s immune system to target cancer cells from within. This form of treatment also has side effects that may include diarrhea, fatigue, and nausea among other side effects.
“I knew the side effects and knew that it sounded a lot better than chemotherapy, radiation, and surgery,” Spill said.
Fortunately, Spill’s immunotherapy treatment proved to be effective.
“By my ninth treatment, the tumor had completely disappeared, which was probably the best day of my life,” she said.
She still undergoes screening and receives a PET scan, an MRI, and a sigmoidoscopy which screens the lower part of the colon.
More good news, Spill and her partner were able to have a second child, a beautiful baby girl.
“I had a chance to bring another life into the world, and it’s been very humbling…I feel so grateful for every opportunity that’s come my way,” Spill said.
Spill’s cancer journey is a reminder to others who suspect something is amiss with their health and doctors aren’t fully addressing their concerns to advocate for themselves.
“Really advocate for yourself, continue to push,” Spill said.
Advocating for Your Health
Patients advocating for their health can lead to better patient outcomes. This is especially important when you find your doctor has either dismissed or misdiagnosed your symptoms. Spill realized a hemorrhoid likely wasn’t the culprit of her lingering symptoms and fortunately, she pushed for more answers.
A component of advocating for yourself in healthcare includes going back to the doctor multiple times and even getting multiple opinions.
Dr. Steven Rosenberg is the National Cancer Institute Chief of Surgery, and he previously told SurvivorNet about the advantages of getting input from multiple doctors.
WATCH: The value of getting a second opinion.
“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care. Because finding a doctor who is up to the latest information is important,” Dr. Rosenberg said.
Questions to Ask Your Doctor
If you are facing a colon cancer diagnosis, here are some questions you may ask your doctor.
- What are my treatment options based on my diagnosis?
- If I’m worried about managing the costs of cancer care, who can help me?
- What support services are available to me? To my family?
- Could this treatment affect my sex life? If so, how and for how long?
- What are the risks and possible side effects of treatment?