Unusual Behavior & Dizzy Spells For Seattle Woman Were Actually Kidney Cancer– How Immunotherapy Helped Her Beat It

Now, after undergoing brain surgery in January 2021, rehab, and radiation, and a combination of two immunotherapies, Lacey is disease-free, has a new appreciation for life, and is sharing her uplifting story to offer others hope through adversity. She also credits her oncologist at Fred Hutch Cancer Center for telling her about immunotherapy treatment.

RELATED: New Cancer Treatments Like Immunotherapy Have Helped Prevent More Than 4 Million of Deaths From Cancer — How Can Even More People Be Helped?

Suzzanne Lacey's stage 4 #kidneycancer diagnosis was no match for a potent blend of #immunotherapy, including a unique approach to reduced-frequency dosing. “It worked for her,” said Lacey's oncologist, @EvanHallMD. https://t.co/lMbGtjNjOV

— Fred Hutchinson Cancer Center (@fredhutch) March 7, 2024

Lacey, who started a nonprofit called Museum Without Walls, recently opened up to Fred Hutch News Service insisting her “life has changed” for the better since her cancer diagnosis.

“I was really depressed. I was grieving. I missed my dad. But the moment I got this diagnosis, I had a clear epiphany that no, I didn’t want to die,” Lacey explained.

“I see life differently, and my appreciation for every moment, even when I’m exhausted, is different, and I owe that to my best friends and Fred Hutch.”

Following Lacey’s brain surgery, she needed to decide what additional treatment she would need, and she soon figured that out after meeting with Dr. Evan Hall, a medical oncologist at Fred Hutchinson Cancer Center who specializes in kidney cancer treatment.

When Lacey told Dr. Hall about a time she asked her friend if her dog was chewing gum, a sign she was experiencing neurologic symptoms that cancer has reached her brain, he suggested a combination of two immunotherapy treatments. Due to his approach to fighting her cancer being more aggressive that other doctors she spoke to, she agreed “to hit this [kidney cancer] with guns blazing.”

Lacey was given an immunotherapy cocktail to help her immune system understand the multiplying kidney cancer cells were not normal, and thankfully, Dr. Hall said, “It worked for her.”

A few months later, Lacey’s tumor minimized by a third of what it was, becoming so small it was able to be removed surgically removed in spring 2022 by her surgeon Dr. John Gore.

Lacey recalled, Dr. Gore saying, “there wasn’t an ounce of cancer” left, “just scar tissue.”

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She continued, “Everyone was thrilled. I remember Dr. Hall saying, ‘We are men of science. We never use the word miracle, but this feels pretty close.'”

Then in April 2023, two years after undergoing immunotherapy treatment, she had blood tests and scans done every three months to check if she cancer stayed in remission with the help of a small dose of one of the immunotherapy drugs.

Lacey, who remains in remission to this day, is also taking part in a clinical trial to help doctors understand how long immunotherapy drugs can stay in one’s body.

Dr. Hall told the news service, “We don’t know how long patients should use these medications. The immune system learns and it has a memory, which is different than with other kinds of cancer therapies. We don’t know when to stop immunotherapy. It is a major unanswered question in our field.”

Now she’s been receiving lower-intensity treatment every three months instead of every four weeks, an approach developed by the Fred Hutch cancer center.

The approach to “step-down dosing” is “unique” to the cancer center.

Dr. Hall explained, “In some cancers, there is a growing concern there could be late progression years later, so the thinking is that continued treatment may reduce that chance.”

Dr. Lisa Tachiki, who recently published a study on this type of treatment, added, “Reduced-frequency dosing provides an option for patients to continue immunotherapy, rather than stop entirely, while still using less drug and saving cost and time of drug infusions. It’s a middle-path approach.”

Learning About Kidney Cancer

According to the National Cancer Institute (NCI), an estimated 81,800 people in the United States were diagnosed in 2023 with kidney cancer, a disease which can develop in both adults and children. The disease is generally found in older people, with an average age of diagnosis at 64.

 

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Kidney cancers generally don’t cause symptoms in early stages, but possible signs and symptoms of this cancer include:

• Hematuria, blood in the urine
• Inexplicable low back pain on one side
• A lump on the side or lower back
• Fatigue
• Loss of appetite
• Inexplicable weight loss
• Inexplicable fever
• Anemia, a low red blood cell count

These symptoms are not exclusive to kidney cancer, and, interestingly enough, one of our experts says most kidney cancers are actually diagnosed by accident nowadays.

RELATED: Clinical Trials for Kidney Cancer

“Traditionally, kidney cancer was diagnosed in people coming in with blood in the urine, a mass [in the] belly that was big enough that you could feel, or pain on that side,” Dr. Geoffrey Sonn, a urologic oncologist with Stanford Hospital and Clinics, told SurvivorNet.

“More recently because of the great increase in the use of imaging with ultrasound, CAT scans, MRI most kidney cancers [are] diagnosed incidentally, meaning a scan is done for another reason.”

Patients without symptoms might get their cancer diagnosis after scans are done for unrelated reasons, and others might find out they have cancer after a scan is done to investigate abdominal pain or some other issue. Either way, it’s important to stay up to date on check ups and speak with a doctor about any inexplicable or concerning changes to your health.

“For localized kidney cancer, for relatively small masses that have not metastasized, most often patients feel nothing, and this is found on a scan done for another reason,” Dr. Sonn said. “For larger masses of the kidney they may have pain on that side, they may see blood in the urine or a routine urine test may show a microscopic amount of blood in the urine that’s not enough to be seen visually but still will prompt further testing with imaging that shows the kidney cancer.”

Since kidney cancer may or may not cause symptoms, it’s important to always advocate for your health. According to Dr. Zuri Murell, director of the Cedars-Sinai Colorectal Cancer Center, guidelines in this country are meant to take care of and do the right thing for the largest number of people while using the fewest resources.

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“The truth is you have to be in tune with your body, and you realize that you are not the statistic,” Dr. Murrell said. “Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn’t work, what the next plan is.”

“And I think that that’s totally fair. And me as a health professional that’s what I do for all of my patients.”

Immunotherapy — A Game-Changer

A type of treatment called immunotherapy that has taken center stage in cancer treatment over the past decade.

Immunotherapy uses the body’s own immune system to fight cancer cells. It boosts or changes the immune system, enabling it to detect and destroy cancer more effectively.

“Up until now, there’s been three pillars of cancer therapy– surgery, radiation, and chemotherapy,” Dr. Jim Allison, the chair of the department of immunology at MD Anderson Cancer Center in Houston, TX, previously told SurvivorNet.

“Immunotherapy is rather unique in that for the first time, we’re getting truly curative therapies in many kinds of disease… it works in many different kinds of cancers.”

Watch: Dr. Jim Allison explains how immunotherapy works

Allison won a Nobel Prize for his work on how to make the body’s own cells fight cancer. His studies showed that blocking a part of the cell called CTLA-4 removed a brake on the immune system, allowing it to attack cancer more effectively. He went on to develop immunotherapies that have helped save the lives of people living with skin cancer and other cancers.

RELATED: An Immunotherapy Breakthrough: The Judy Perkins Story

How Immunotherapy Works

omVWGQXC is a medicine that triggers your immune system to search for and then attack cancer cells, whether microscopic or in the form of more extensive tumors.

“Immunotherapy originally started as being an indication for patients who had stage four disease,” Dr. Anna Pavlick, a medical oncologist at Weill Cornell Medicine, tells SurvivorNet.

“In the beginning, we began trying to make vaccines to try to trick the immune system into attacking a protein that we thought was important in the cancer. These vaccines for cancer almost never worked. The problem was the cancer was using a different track of the immune system to block it from attacking,” Dr. Ronald Natale, director of the Lung Cancer Clinical Research Program at the Samuel Oschin Comprehensive Cancer Institute, Cedars-Sinai Medical Center in Los Angeles, told SurvivorNet.

“Well, scientists developed treatments, antibodies that would block PD-L1 from blocking the immune system. This unleashed the immune system to resume its attack on the cancer very successfully, at least in some patients,” Dr. Natale added.

“We have now done studies looking at using immunotherapy for patients who have stage three disease. Because we know that these patients have a 50/50 chance of whether this is going to come back or not, we want to make those odds of it coming back even less. But it is not chemotherapy. It does not bring down your immune system. It does not predispose patients to infection. It does not make them lose their hair,” Dr. Pavlick continued.

RELATED: Immunotherapy in Recurrence

While immunotherapy is adequate for most patients, it has some side effects, most related to inflammation. You might experience diarrhea when your colon is inflamed or itching when your skin is inflamed. You can also have pain in your liver or pancreas if you have pancreatitis or hepatitis.

WATCH: Understanding immunotherapy side effects.

Common Immunotherapy side effects include:

• Fatigue
• Nausea or stomach discomfort
• Joint pain
• Diarrhea or constipation
• Cough
• Rash
• Loss of appetite
• Changes in blood cell counts
• Fever

More severe adverse reactions include:

• Pancreatitis: Inflammation of the pancreas
• Colitis: Inflammation of the large intestine
• Pneumonitis: Inflammation of the lungs
• Hepatitis: Inflammation of the liver
• Thyroiditis: Inflammation of the thyroid gland

If you experience severe side effects, your doctor may need to temporarily or permanently stop your immunotherapy treatment.

“The side effects of immunotherapy are not, quote, forever. Depending upon the severity depends upon how we manage it. There are some patients who will get diarrhea, and we can give them treatments to calm down their diarrhea, which lasts a couple of days. It might be sporadic over a couple of weeks,” Dr. Pavlick said.

WATCH: Why immunotherapy Isn’t for Everyone

Immunotherapy doesn’t work for everyone with cancer. Dr. Vamsidhar Velcheti, the director of thoracic oncology at NYU Perlmutter Cancer Center, says that, unfortunately, it’s still difficult to predict which patients will respond well to immunotherapy treatments.

“The ways cancer generally escapes the body’s immune system is by protecting itself by producing certain proteins,” said Dr. Velcheti.

“PD-L1 is one of those proteins that actually helps protect the cancer from the body’s immune system. For patients with high levels of PD-L1, you could potentially use single-agent immunotherapy with good outcomes. The problem is that these proteins are constantly in flux.”

Learn More About Immunotherapy

If you want to get immunotherapy or learn more about it, here are some steps you can take:

Ask your cancer doctor. They can tell you if immunotherapy can help you, what it does, and how to get ready for it.
Look for research studies that test immunotherapy. You may be able to join a clinical that gives immunotherapy for your cancer. You can find current trials here.

RELATED: Important Study For Cancer Patients: High Volume Hospitals Produce Better Outcomes For Advanced Cancer Patients Who Receive Immunotherapy– Where You Get Treated Can Matter

Read more about people who have tried immunotherapy. You can learn from their stories, challenges, and tips.

Where You Receive Cancer Care Can Make a Difference

Academic centers and community centers both offer standard-of-care treatment for various cancers. However, academic centers may have more access to certain treatments in the clinical trial phase.

Standard care refers to delivering the appropriate treatment by standards formed based on current medical literature and national guidelines.

Academic cancer centers might have better access to ongoing clinical trials, but clinical trials differ from standard-of-care. Clinical trials seek to explore the effects of a new medication or compare new treatments to the current standard of care.

Additionally, SurvivorNet experts say there is a significant amount of variability between academic and community centers, making it difficult to make broad claims comparing the different cancer centers.

“In terms of access to standard care, be it chemotherapy, targeted therapy, or immunotherapy, all those approved drugs are available for use regardless of where you get treatment or care,” Dr. Chul Kim, a medical oncologist at MedStar Health in Washington, D.C. explained to SurvivorNet.

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Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

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