Achieving quality of life for people with advanced cancer through individualized care
Editor's note: Laurie passed away peacefully in October 2022. Her wish was to share her experiences with hope that they might be meaningful to others living with cancer or in survivorship of it. Her late husband, Herb, continues to publish her remaining entries on her blog. We thank Laurie and Herb for allowing Mayo Clinic to tell her story and share her light with others.
By Jessica Saenz
Why plan a funeral when you can plan a wedding?
This isn't a choice most people will ever have to face, but when it presented itself to Laurie Kahn while being treated for stage 4 breast cancer, the answer was obvious.
After an initial diagnosis of breast cancer and treatment in 2015, Laurie's cancer recurred in 2020. But this time, it was more aggressive.
She decided to seek care at Mayo Clinic in Arizona, where her care team included members from medical oncology, pulmonology and palliative medicine — all working together to devise the best plan to manage her illness while giving her a meaningful quality of life
"I've always been a glass half-full person, though I was thinking to myself, 'Well I guess I need to plan a funeral now,'" says Laurie, 67. But the idea of a funeral didn't sit well with her.
A friend had another idea: a celebration. Specifically, a wedding for Laurie and her partner of seven years, Herb."Cupid shot me, finally," Laurie recalls. "I came home and said, 'What do you think of planning a wedding instead?'"
Soon after, she met with Felipe Batalini, M.D., her medical oncologist at Mayo Clinic. Dr. Batalini and his team worked with Laurie to develop a treatment plan that would allow her to walk down the aisle and live life to the fullest, despite cancer.
Being diagnosed with advanced cancer can be challenging, but Laurie is on a mission to share her story to inspire others about the value of collaborating with your health care team on a treatment plan that will allow you to live the life you want.
Here is what Laurie and Dr. Batalini recommend:
Learn more about your cancer, the treatment options available and your goals.
Before deciding about cancer treatment, think about your goals and learn about your cancer and treatment options. "My goal is really to absorb the patient goals and work with their values," says Dr. Batalini. "I make different recommendations for similar diseases for patients based on our interactions. There are times when there isn't much room for flexibility, but a lot of times, there is."
For many patients, genomic biomarker testing can provide insight into whether alternative treatments might be an option. Targeted-drug therapy and other forms of individualized medicine focus on the unique abnormalities of each person's cancer cells, and they often have fewer unpleasant side effects than traditional therapies, such as chemotherapy and radiation.
In Laurie's case, the genomic biomarker test helped identify specific mutations that targeted therapy was available for. "She had a mutation in the PIK3CA gene, which causes the tumor to grow faster and more aggressively, but we have an inhibitor for that specific gene that can slow down — and sometimes shrink — the cancer. It certainly improved her quality of life," says Dr. Batalini.
But additional testing might not benefit everyone, he says. That's especially true if certain biomarkers cannot be detected or if a drug isn't available that can target them. Dr. Batalini says it's important to find a health care professional who is knowledgeable about your cancer to help determine if individualized treatment is an option for you.
Timing is also key for genetic biomarker testing. Results and insurance approval can take weeks of valuable time, he says, so planning ahead is critical.
"I don't want the patient in a situation where we need to act, but we still need to go after genetic information," he says. "The name of the game in cancer is to be one step ahead all the time. For patients with metastatic, advanced disease, or even when patients have controlled disease, we have to think: 'What if it progresses? What are we going to do next?'"
Ask if clinical trials are an option.
When cancer continues to progress despite standard treatments, or when available drugs are no longer effective, it's time to talk to your health care professional about clinical trial options that could be right for you.
"In general, especially for metastatic disease that progresses after first-line therapy, I think clinical trials are a way of hope. I always encourage my patients to participate when it's appropriate," says Dr. Batalini.
Research has helped cancer experts better understand genetic mutations that can affect cancer, leading to many breakthroughs. But Dr. Batalini says cancer research has a long way to go, and clinical trials can lead the way. "We've sequenced thousands of genes, but we still don't understand a lot of them. That's why it's so important that we continue pushing for research and clinical studies."
Understanding how clinical trials work, and what to expect, can help you decide if you are comfortable participating in one. Because each trial can vary in time commitment, risks and benefits, you should discuss options and concerns with your physician.
"There is progress happening all the time. I would encourage patients to always be in touch with their oncologist, looking for clinical trials and making sure that all the possibilities are explored," says Dr. Batalini.
Think about what's important to you.
For many people living with advanced cancer, treatment schedules and side effects can make it challenging to enjoy the things they value most. Laurie advises talking to your health care team about possible adjustments that can be made to your care plan, so you have the freedom to live life the way you want.
"When we design a treatment plan for patients, it's really about helping them live better on their own terms," says Dr. Batalini. "Many times, the right thing to do is to avoid the toxicity of treatments that aren't helping so that patients can really prioritize what matters most to them."
As Laurie began wedding planning, she collaborated with Dr. Batalini and her care team to coordinate her treatment schedule in a way that would allow her to enjoy her wedding and the days that followed.
"They helped move appointments so I could be my best during my day," she says. "When we walked out of there for our week of loving, my mind was at ease. We had a game plan together."
Consider what it would take for you to feel more at ease with your diagnosis and to live life more fully.
For some people, this includes:
- Maintaining independence.
- Spending more quality time with family and friends.
- Attending important life events.
- Traveling and participating in other hobbies.
- Living pain-free or more comfortably.
"Every patient is different," says Dr. Batalini. "Laurie's primary goal was to get married. I think we aligned very well in that, and she can now enjoy a longer period of life while taking pills and injections, as opposed to coming to the infusion center."
Explore how palliative care can improve your quality of life.
Palliative care uses a team approach to help patients with serious illnesses like cancer find relief from pain and other symptoms. Palliative care can be beneficial at every stage of cancer care.
In many cases, palliative care can relieve pain and discomfort, but it also can address other physical, mental and spiritual challenges where you or your family might need support, including:
- Physical therapy.
- Symptom management.
- Emotional support.
- Chaplain services.
- Social work support.
- Caregiver and family support.
Cancer can affect many areas of your life, health and well-being. Palliative care can help you examine the areas that need additional care and support. When those needs are met, you might find it easier to do the things you want or need to do.
Talk to your health care professional about palliative care resources that might be available to you or your family through your current health care professional or through a referral.
There is no right or wrong way to live with advanced cancer. What might feel empowering to another person might not be empowering to you. Reflect on the changes you'd like to see and prioritize these with your health care professional.
"A cancer diagnosis is very scary," says Dr. Batalini. "Even though I do have some tough conversations, I think there's always room for hope because we don't know what's next."
So far, treatment flexibility and targeted therapy have helped Laurie not just walk down the aisle, but also take a honeymoon to Santa Monica Beach, California, and launch a blog, Candid Conversations About Cancer, about her experience and advice for others. Next on her milestone list: publishing a book.
"I think you have to just get comfortable with your diagnosis and your medical team, and take one day at a time," she says.
Watch Laurie Kahn share her story in this video:
Also see these articles:
- "Glioblastoma in older adults: Improving survival and quality of life."
- "Georgia man with neuroendocrine cancer gains quality of life, thanks to new nuclear med therapy."
- "Palliative care for people with cancer designed to fit the needs of each patient."
- "Terminal illness: Supporting a terminally ill loved one"
- "Cancer treatment decisions: 5 steps to help you decide."