Knowing how to navigate cancer treatment can help you make decisions that will enable you to get the right care and support services.
Make no mistake. When a person receives a cancer diagnosis, it’s like their world suddenly stops—but major decisions can’t wait. First there’s a crash course in cancer, and then they must choose an oncologist or surgeon, decide on treatments, find a source for treatments, learn about and decide on whether to participate in clinical trials, find emotional support, and so the list goes on for a newly diagnosed cancer patient.
The National Cancer Institute estimates that approximately 40.8 percent of people will be diagnosed with cancer at some point during their lifetime. In 2011, there were more than 13 million people living with cancer in the U.S.
Kim Thiboldeaux, president and CEO of the Cancer Support Community, a nonprofit organization that provides support and education for people impacted by cancer, told Healthline, “Cancer patients are launched into this whole new area with a whole new language. They feel that they don’t have the basic tools and information they need.”
For many cancer patients, understanding their exact diagnosis is the first challenge. They may not be hearing clear explanations about the type of cancer they have or what stage the cancer is at.
Sergei German lived through this period of uncertainty. When he was diagnosed with follicular lymphoma in March 2013, his first reaction was disbelief.
German told Healthline, “I couldn’t believe it because I didn’t feel anything. I was exercising and living a healthy lifestyle. I didn’t smoke. It could strike anybody. It is something you have to deal with. Quite soon, I knew that my life was changing. Your perspective on life changes a lot.”
“When they tell you that you have lymphoma, the first thing you think is that you are going to die tomorrow. Then tomorrow comes and you are still alive, but what’s next?”
It took about a month of blood tests for doctors to identify the type of lymphoma that German had. “First they told me I have cancer, and then they told me what particular type of cancer, how far it spread, and what options I had.”
Then after undergoing an incision biopsy, German learned how far his cancer had spread, what his options were, and what his outlook might be.
When seeking cancer treatment, many patients forget what their healthcare providers are telling them during their office visits—there’s a lot to take in, and it can be a frightening time. Thiboldeaux recommends that patients have a spouse, a friend, or an adult child accompany them to the appointments. She also suggests they keep a notebook handy to record their questions and to keep track of all of the information that they receive.
When it comes to getting a second opinion regarding a cancer treatment plan that is prescribed, the experts we spoke to had different recommendations.
Thiboldeaux said patients should never hesitate to get a second opinion.
Dr. Elisa Port, director of the Dubin Breast Center of the Tisch Cancer Institute at Mount Sinai Hospital in New York City, recommends that patients seek a second opinion only if their situation is complicated, or if they are going to be treated in a facility that doesn’t deal with the patient’s disease on a regular basis.
“That is a situation where you may want to seek a second opinion from a more high volume or academic center. If you are being taken care of in a place that is well-recognized and that is a high volume center of excellence for the kind of disease you have and your situation is relatively straightforward you don’t necessarily need to get a second opinion,” she said.
German, who was diagnosed at Mount Sinai Hospital, had a positive experience when he obtained a second opinion from doctors at Memorial Sloan Kettering Cancer Center in New York. “The doctor at Sloan Kettering confirmed the diagnosis and approach. So much depends on how doctors read the results of the biopsy. You want to be 200 percent sure that it’s correct, because the mistake in a diagnosis could be fatal,” he said.
The increasing complexity of treatment for some cancers, such as breast cancer, makes navigating treatment even more difficult.
Port said, “Breast cancer is the epitome of multidisciplinary care, where there are multiple specialties involved in delivering care, and that can be really difficult for patients to navigate in terms of getting to all those different doctors.”
From the 1950s to 1970s, the primary treatment for breast cancer was radical surgery. But current treatments are more conservative, and they involve many healthcare providers.
“Many women who are diagnosed with breast cancer today, in large part due to early detection, can have a lumpectomy. Lumpectomy is usually performed with radiation to follow, and many women need to see an oncologist after that,” said Port. “Some of these women get chemo and some get anti-hormonal therapy. For patients who get mastectomies, there’s also the potential for reconstruction, so there can be a plastic surgeon involved.”
She added, “There may also be a genetic component of breast cancer, so many patients see genetics counselors.”
Using biomarker and genetic tests to determine whether a patient has a genetic mutation or genetic predisposition can help a healthcare professional to guide patients to more targeted therapy.
Some of these tests are new and can be expensive, but many insurance companies are beginning to cover them, according to Thiboldeaux. “It’s important to ask about these tests because they may guide the treatment decision,” she said.
“It’s important to understand from the oncology team what the treatment regimen is that is being recommended to you. What is the treatment plan? How will the treatment be administered? How long will you have the treatment?” said Thiboldeaux.
And then there’s choosing your healthcare providers.
Port advised asking whether the doctor is a specialist, and to find out the volume of surgery that the surgeon performs. There are also complicated questions that an experienced cancer specialist would be knowledgeable about, such as when to send someone for genetics testing, when to order an MRI, and what post-surgery and post-treatment options are recommended (for example, breast reconstruction).
Deciding whether to seek treatment close to home or to travel to another location to get treatment is another challenge that patients face as they navigate treatment—for example, finding transportation to and from chemotherapy treatments can be a difficult challenge for some patients.
Selecting care at a center that offers a “team” approach to treatment has many advantages for cancer patients, including the ease of getting referrals to specialists and support services.
“We’ve had people skip appointments because they couldn’t find appropriate child care and they were told not to bring their children. We provide the navigators and the social workers who can help coordinate that. In terms of ancillary care, we have social workers, psychologists, and psychiatrists who can prescribe medicine for people who are depressed and anxious,” said Port.
Thiboldeaux added, “There are increasingly more guidelines and regulations that are requiring that hospitals provide these services. We want patients to be empowered and to ask for supportive services at the hospital, at a cancer center, or in the community.”
When patients make treatment decisions, they often lack any knowledge about the possibility of participating in clinical trials, even though there are potential benefits from treatments that are being tested.
“When most people think about clinical trials, they think it’s a medical study where you are going to get either the treatment or a placebo. In a cancer trial, you are not going to get a placebo. The benefit could be that the investigation arm could very well be the next greatest treatment in your kind of cancer. At a minimum you are going to be getting the standard treatment,” said Thiboldeaux.
German is one patient whose search for a clinical trial resulted in getting a vaccination, which appears to be very beneficial in fighting his cancer.
He explained, “Dr. Joshua Brody of Mount Sinai Hospital was running [a] trial at the time for an in situ vaccination. It’s a very personalized vaccine. The description of the trial reads like a thriller. Your body becomes a battlefield and teaches your immune system to recognize and kill cancer,” said German.
After undergoing more tests and a biopsy, German began to receive the treatment. Pointing out that the only side effect was fever, which lasted only 24 hours after the vaccinations, German said, “It took 12 weeks for the active stage of this trial. At the end of 12 weeks I took another blood test and a CT scan, and it showed that a lot of [the] cancer was gone. The hope is that the cancer cells will be taken care of by my immune system. It’s incredible. Hopefully, it will work. I feel good.”
Follow-up care on a timely basis is yet another crucial component of a treatment plan.
Port said that she makes follow-up appointments for her patients for two to three months. “In three months’ time, if the patient hasn’t seen the medical oncologist or radiation oncologist, it’s still within the time frame that it’s still safe for them to go. It’s not six months or a year later, where it’s too late to do all those things you were supposed to have done.”
Thiboldeaux summed up the importance of helping patients navigate treatment best: “We as a cancer community need not only to provide the best medical care, but also to make sure we are looking at all of the elements a patient confronts when they’re diagnosed, so they can have the optimal care.”
German offered this advice for newly diagnosed cancer patients, “You have to fight back. There’s nothing worse than giving up. There’s a lot of new research. Keep looking. Something will work out. Navigating treatment is difficult, but it is doable.”