First things first, take a deep breath and understand that the treatment of cancer has been rapidly evolving, according to Marcia McMullin, coordinator at the Center for Breast Health at Carroll Hospital.
“We’ve come a long way: We are finding cancer a lot sooner; we have a lot better treatment,” she said. “It’s much different than a decade ago.”
One of the ways it is different is that there is now a much greater appreciation for how individual each person’s cancer experience will be, McMullin said, with the genetic makeup of a person’s tumor driving the type of treatment they will receive.
“Where we are in cancer care right now is really treating patients according to the biology of that cancer, that’s why everybody is treated a little differently — everybody’s makeup, everybody’s DNA is different,” she said. “Somebody having a certain journey in their cancer treatment may be very different from somebody else and they might each have breast cancer. That can be sometimes confusing for people.”
That fact combined with the reality that breast cancer is quite different than, say, colon cancer, make it difficult to generalize and explain just what a newly diagnosed patient can expect, according to McMullin, but there are some basic patterns she was able to lay out, using her area of expertise, breast cancer, as a model.
“We will see a patient when they have gotten a biopsy back, typically, when they have a positive diagnosis,” she said. “They are coming in to get that news and then from that point on, what patients need to know is there are usually lots of appointments and tests because we need to formulate a plan for what the next steps will be.”
That could involve imaging such as MRI or PET scans for breast cancer, McMullin said, or other tests or diagnostics for other cancers, but she said there may be some weeks of “hurry up and wait” as physicians determine the best treatment plan.
“Cancer is typically treated in four ways: surgery, chemotherapy, radiation and maybe some sort of oral therapy, whether it be hormonal or chemo,” McMullin said. “Some people have all of that, some people might only have one, it just depends.”
In some cases, breast tumors are so small they can be easily excised in an outpatient procedure, McMullin said, but larger tumors can require different approaches.
“You would assume that the first thing we would do is go have surgery and get that lump out of your chest,” she said. “But sometimes, given the biology of the tumor, we may do chemo first. We may have a better surgical outcome if we shrink that tumor.”
If a treatment takes that course, McMullin said, the patient will need a port inserted, a separate surgical procedure, after which chemotherapy could follow a number of different regimens, perhaps one chemo treatment a week for six to eight cycles. MRI or other imaging to confirm shrinkage of the tumor could then precede surgery, but only after four to six weeks to heal from the chemotherapy, she said.
“Then after the surgery we’re going to want you to heal for several weeks to start radiation, if that’s in your treatment,” McMullin said. “You could see why this might be a long journey, the better part of a year for some patients.”
Some early things to consider, then, are how you will arrange your life around your treatments for the long haul, McMullin suggested.
“I always say it’s like you’re going to be starting this part-time job with us; appointments, diagnostics, surgeries,” she said. “Know your benefits with your insurance. It’s a good idea to know what will be covered. Talk to your HR department about short-term disability, just so you have that as a possibility, because once again, everyone kind of goes through this very differently.”
And for patients getting treatment at Carroll Hospital, they don’t have to do all that on their own, according to Karen Alban, R.N., an oncology nurse navigator at the William E. Kahlert Regional Cancer Center.
“Within the first couple of visits our social worker meets with the patients, all cancer patients, routinely, to do what we call a barrier assessment,” Alban said. “Barriers include anything that could get in the way of their being able to participate in and complete their treatment. Transportation issues, financial issues, emotional issues, depression, anxiety — all of those things.”
Alban has been an oncology nurse for more than 30 years, and said there are a number of things that are constant with patients, concerns, as well as things that help them.
“People do better taking in information when they have another person with them, who can listen with them and for them to all of the information and instructions they are given on that first day,” she said. “It’s a tremendous amount of information from the doctor, from the nurses, from the schedulers.”
A lot of the anxiety people have over the early uncertainty around their diagnosis and treatment smooths out after they get their first treatment, Alban said, and they learn what is happening when, and why, and how they will react to it. It helps them to plan their lives, she said, though flexibility there is a helpful trait.
“The people who have the better time starting treatment and all the work that goes into preparing for treatment are people who are willing to be, or able to be flexible with their schedules,” Alban said. “Take things as they come and not go too far ahead — not think about next week. Let’s think about tomorrow afternoon.”
One day at a time, people do get through their active treatment, but their journey with cancer doesn’t end there, McMullin said, as, depending on the type of cancer and their case, they will need to be seen for regular checkups and other follow-up care.
“I think what we often stress after active treatment is that patients are going to be put on a surveillance,” she said. “We are going to want to make sure they follow a protocol to make sure they continue getting their screenings and their mammography, and come back to see us.”
And not all follow-up care is strictly clinical — the hospital also maintains a survivorship program to help people in their transition back to life after cancer, McMullin said.
“We offer a program called EMBRACE, it has many components to it to try and keep people active and healthy and engaged,” she said. “Cancer definitely changes people’s lives. We want to make sure we are in close contact so we can offer those special programs that can help them stay health and supportive so they feel like they have resources and support.”
Cancer definitely changes lives, and McMullin said that one refrain she has heard time and again from survivors is that while they would never have signed up for the journey, they do find things of value along the way.