Before sitting down with your oncologist for the first time, there are a few things you can do to prepare physically and mentally. Niloy J. Deb, MD, Assistant Professor of Radiology, Texas A&M College of Medicine, and Chairman and Medical Director, Department of Radiation Oncology at Baylor Scott & White Health, Temple, TX, provided 5 tips to help patients become better informed and better prepared when they receive a diagnosis of cancer.
“The more informed the patient is, the better everything is going to be,” Dr. Deb said in an interview, while elaborating on the following 5 tips.
1. Come Prepared
Once you have an appointment with a cancer specialist, gather all your records and bring them in for the first visit. Any CDs or slides from imaging tests you had, such as a CT scan or ultrasound, are better than paper reports, Dr. Deb says.
In addition to your records, Dr. Deb also recommends you write down any questions or concerns specific to your situation. At the first meeting, your doctor will try to provide answers to common and pressing questions, but it’s important that you feel comfortable to talk with your care team about any concerns that come up.
“Cancer treatment is a team effort,” Dr. Deb says, and a main component of making that team succeed is good communication between all those involved.
2. Beware of Hearsay
Making sure to communicate with the right person is half the battle. It’s very common for patients to do research on their cancer before meeting with their oncologist, Dr. Deb says, but sometimes what you read and what your oncologist has to say don’t line up.
“One thing people very often do is listen to hearsay and research on the Internet,” Dr. Deb says. “But you have to understand that on the Internet, the people who are writing most of those reports are laypeople. They are just writing their own experiences.” In other words, much of the information available online is not written by people who have studied medicine, specifically cancer care.
It is important to remember that not all cancers are treated the same way. For example, breast cancer can be treated with chemotherapy and surgery (mastectomy) for one patient, but another patient may just need chemotherapy, without surgery. This can cause a problem when a new patient expects to receive treatment based on information online, Dr. Deb says.
“There is a gap between what in my medical expert opinion should be done for the patient, and what the patient’s expectation is from reading other people’s experiences,” he emphasizes.
Dr. Deb says that during the appointment, your oncologist will go over your specific cancer, including the stage, the type and location of the cancer, and the prognosis. Your treatment plan may be different from what other patients with the same cancer have shared online, but your care team knows what is best for your specific case.
3. Build a Support System
Hearing you have cancer, and that you may be dealing with it for quite a while, can be extremely distressing. Dr. Deb suggests that you discuss your diagnosis with several of the people who are closest to you. This can help you emotionally, and may also help you with your treatment.
“People that come in with a supporting family member—spouse, brother, sister—typically do much better than patients who come in by themselves,” he says.
And once the side effects of chemotherapy or radiation kick in, a support system may be needed even more.
4. Temper Your Expectations
When doing your own research, you will undoubtedly come across many survivors who claim to have been cured of their cancer. Dr. Deb cautions, however, that you should temper your expectations.
“I am a little uncomfortable saying ‘your cancer has been cured.’ We can do that only for a very few cancers, maybe a very, very early-stage breast cancer in an older woman, or maybe a low-risk lymphoma in a teenager,” he says. “But for all practical purposes, most other cancers will come back at varying time periods. The longer you live, the higher the risk of the cancer coming back.”
Instead of “cure,” Dr. Deb prefers to use the word “control” when it comes to cancer. He prefers to tell patients, “We are going to control your cancer for ‘x’ number of years.”
5. Ask About the Costs of Cancer Treatment
Cancer treatments are very expensive today, even for patients who have health insurance. Concerns over the cost of treatment are often at the forefront of a patient’s thoughts after receiving a cancer diagnosis. Many patients will ask their doctors about costs on the first meeting, but Dr. Deb cautions that many oncologists will not be able to answer those questions accurately, because they normally don’t do the billing themselves.
Instead, he encourages patients to go through the business or the administration office, so a financial expert can explain what will be covered and what will not, or provide other advice on available financial support if needed.
Many large institutions have billing specialists who can answer questions about insurance and what will be the out-of-pocket costs to the patient. Smaller practices may not have a business office or financial advisors. In those cases, you could get information from your insurance company, but you have to ask for that. In addition, many drug companies provide financial support services for their drugs for patients with financial difficulties.