If you've recently heard the words, "It's cancer," your world has probably turned upside down. You have a million fears and a million questions, and you may not be sure where to turn next.
No matter what type of cancer you might have, most of these fears -- and a lot of these questions -- are universal. With the help of two nationally renowned cancer experts, WebMD answers your top 10 questions about what to do after you've been diagnosed with cancer, and how to find the best treatment.
1. Where can I find the best cancer care for me?
When it comes to cancer, not all doctors and hospitals are created equal. At minimum, says J. Leonard Lichtenfeld, MD, deputy chief medical officer with the American Cancer Society, you should find a doctor affiliated with a hospital that is accredited by the Commission on Cancer. "These programs have multidisciplinary teams, information about access to clinical trials, and comprehensive, state-of-the-art care," Lichtenfeld says.
If there is a comprehensive cancer center, designated by the National Cancer Institute, near you, it's a good idea to seek care or at least an opinion from one of these top-notch centers. "It's a myth that you can't just call up a top cancer center like Sloan-Kettering, or M.D. Anderson, or Dana-Farber, and get an appointment," says Leonard Saltz, MD, a gastrointestinal cancer specialist at Memorial Sloan-Kettering Cancer Center in New York City. "All of these cancer centers have dedicated patient access lines."
Or you can use the American Cancer Society's guidelines for choosing treatment facilities and health professionals. They include advice on how to talk with your doctor, a worksheet on evaluating doctors and treatment centers, and a database of hospitals and physicians.
Wherever you go, ask your doctor how much experience he or she has had treating your particular type of cancer. How many cases has he or she treated this year? In the past five years?
With more common types of cancer, like breast cancer or colorectal cancer, it may be easier to find an experienced doctor near you, even in a small town. But if you have a less common cancer, like sarcoma, neuroblastoma, or pancreatic cancer, you'll likely be better off at a bigger center, Lichtenfeld says. "If you have a relatively uncommon cancer, you need to be somewhere where there's a lot of expertise and a team of people," he says.
Where you get your initial cancer care may matter most, both doctors say. "The best cancer care may require the best operations from the start, the best decisions about useful of different treatment modalities, and exposure to trials and new therapies," Saltz says. "Many people will get cancer diagnosed, quickly get an operation to remove it in the community setting, and then seek more specialized advice as to how to go from there. I think that's a mistake -- you can't put the genie back in the bottle. Most of the time, especially with solid tumors, you have time to seek a second opinion."
How do I know if I'm getting the right treatment?
Lichtenfeld recalls a patient he once spoke to, a younger woman with very early stage breast cancer. Her surgeon -- an experienced and well-regarded breast specialist -- had recommended she have a double mastectomy, an opinion that shocked him and other doctors she spoke to.
"Not all doctors will get it right all the time," Lichtenfeld says. "Again, never be afraid to get a second opinion."
One way to find out if the treatment you've been recommended is standard of care for your particular cancer is to call the American Cancer Society's Helpline at 800-227-2345. The trained cancer specialists who staff the line 24-7 can tell you what treatments are standard for your type of cancer and help you understand your treatment plan.
Do I have to travel to get good care?
Not necessarily. If you can find a Commission on Cancer-accredited hospital in your area, that institution may provide the best treatment option for you close to home. Although major cancer centers provide access to a lot of resources and state-of-the-art technologies, it may be that you'd get the exact same treatment nearby as you would a few hours away at a major center.
"A great doctor at the bedside is worth five expert doctors flying around the country," Lichtenfeld says. "You also have to think about your total situation. If you have metastatic cancer and are interested in a clinical trial that's available far away, you have to weigh how much advantage you would get going to the cancer center to get that trial, versus how comfortable you would be at home."
It can certainly be worthwhile to make a trip to a major cancer center to get a second opinion. There, you may find that they would recommend exactly the same treatment that your hometown cancer doctor would. Or if you can't make the trip, call the ACS Helpline and ask if the treatment you've been recommended is standard for your type of cancer, and if there are other recommended courses of treatment.
If your cancer is rare or more advanced, it may be more important to travel in order to find a hospital or center with expertise in the latest treatments for your particular cancer, Lichtenfeld says.
I've heard that you can get cancer treatments that aren't available to anyone else through a clinical trial. Is this a good idea for me?
"Clinical trials are often a desirable option and worthy of consideration for many patients," Saltz says. Unfortunately, far too few people participate.
"Major cancer centers will usually tell you about trials that might be right for you, but if your community physician isn't directly involved in a particular trial, he can't offer it to you as an option to participate. Often, you have to educate yourself about what trials are available," Saltz says.
You can find out about trials that you may qualify for by calling the ACS's Helpline or searching the National Cancer Institute's clinical trials database.
What if I sign up for a clinical trial and I don't get any treatment at all, just a placebo?
That can never happen without your knowledge and consent. "A study must tell you, both verbally and in writing, exactly what the plan is. If there is a study that involves a placebo, it will be explained to you in detail," Saltz says. "There is never a possibility that the doctor will tell you you're getting something and you're getting something else."
Most clinical trials don't involve a placebo. Rather, you're "randomized" (placed at random) into one arm or the other of the trial, where you get either treatment A or treatment B.
"Sometimes, you may get a placebo in a trial where they're comparing the standard medication for a certain cancer to that medication plus the experimental drug," Saltz says. "We think the old drug plus the new drug might be even better than the old drug alone, but we don't know. In a trial like this, you'd definitely get the known drug either way, but you'd have a 50-50 chance of getting the new drug instead of an IV with sugar water. But you're still getting the standard of care for your cancer."
My friend had the same kind of cancer I have. Should I expect the same treatment, prognosis, and side effects?
Maybe not. Every person is different, so every cancer is different -- even those that seem on the surface to be exactly the same. "What was right for your friend might not be right for you, and what happened to your friend may not happen to you," Saltz says.
Besides, cancer treatment is evolving at a rapid pace. Your friend may have had one kind of treatment for her cancer five years ago, and since then, a new drug may have emerged that improves on the old treatment regimen.
Side effects may vary, too.
"We don't know how to figure out who will have an easy time with treatment and who won't," Saltz says. "There's a particular type of chemotherapy I use regularly, with a long list of possible side effects. Some people get all of them, and some people get virtually none of them, and most are in the middle. I've had people who haven't missed a day of work, people who are incapacitated, and everywhere in between. And there's no way to anticipate who will have what experience.
Fortunately, just as cancer treatments have evolved, so have the tools for managing their side effects. For example, there are newer drugs for nausea that have helped to minimize or even eliminate this very common and much-dreaded side effect of chemotherapy.
What is my prognosis? What are my odds of survival? Am I going to die?
Your cancer prognosis depends on a lot of things: how early or late the cancer was diagnosed and how advanced it is, how common or rare it is, how difficult it is to treat, and how healthy you are otherwise.
In general, cancers are "staged" with numbers ranging from 0 to 4, and the lower the stage number, the better. If your cancer has metastasized -- that is, spread beyond the original organ where it started to other parts of your body, like the lungs, liver, or brain --the prognosis is not as good as with an early stage cancer.
A particular cancer may be hard to treat if, for example, the tumor is close to or even wrapped around a vital organ, making it difficult or impossible to remove completely without irreparably damaging the organ. And if you're otherwise very healthy, you may be able to withstand a more aggressive course of treatment that has a better chance of wiping out your cancer compared to someone who's frail and has a lot of other illnesses.
But ultimately, a prognosis is just a number. "Prognosis is an art, not a science," Lichtenfeld says.
"You're never going to find what you're looking for when you try to find out your chances of survival with a particular cancer," Saltz says. "You're not going to find the one paper that says, 'Don't worry, I have all the answers and if you do this, everything will be OK.' No matter what, you'll find numbers that will be upsetting. If it isn't a 100% chance of cure, it won't make you happy -- and with cancer, that's virtually never the case. I try to avoid numbers and prognoses and focus on a plan for treatment."
Should I use an herbal remedy that I've heard about to help with my cancer treatment? It's natural, so it can't do any harm, right?
Never use an herbal or botanical remedy, or other "natural" supplement, while undergoing cancer treatment without talking to your doctor. Just because something is natural doesn't mean it has no side effects, and some herbs and botanical remedies have been documented to have negative interactions with cancer treatments. For example, St. John's wort, often taken for depression, can reduce the effectiveness of certain chemotherapy drugs. Many herbs and supplements can also interfere with normal clotting, which means they shouldn't be taken if you're soon to undergo surgery.
It's not that complementary medicine is off limits. In fact, some complementary therapies, such as acupuncture, have been embraced for cancer patients. But the rule of thumb is to tell your doctor about anything and everything you're doing in response to your cancer, whether it requires a prescription or not.
Besides my surgeon and oncologists, who should be on my cancer care team?
One very important set of people who will definitely be on your team are the oncology nurses. These are the people who will spend the most time with you, who will actually administer your chemotherapy (if you get it), and who will monitor your side effects and answer a lot of your questions. Get to know your nurses. "They're your first line of defense," Lichtenfeld says.
Nutritionists can also play a key role for the person with cancer. "Cancer treatment can debilitate your body, and you need to be eating a healthy diet to give you the strength you need to deal with the side effects and fight the cancer," Lichtenfeld says. A good nutritionist with experience dealing with cancer patients can advise you, for example, on what foods you might be able to keep down during chemotherapy, or what kind of foods can help with a low white blood cell count.
Many cancer centers and hospitals with larger cancer programs will also have psychiatrists, psychologists, and/or social workers on site. Take advantage of the help these people offer -- and seek them out if your hospital doesn't have them. "Emotional support is critically important for anyone going through a trauma, and a cancer diagnosis is a trauma," Saltz says.
Other helpful professionals might include massage therapists or yoga teachers. "Relaxation tools are great for people dealing with cancer. Anything that helps you cope is good, so I'm 100% in favor of things like massage therapy and meditation," Saltz says.
Well-meaning people want to give me advice about what kind of treatment I should have, or tell me their own cancer stories. What should I do?
"Everybody in the world, once they hear you have a cancer diagnosis, will immediately want to share an anecdote with you. It may be the most upsetting story in the world, and you can't figure out why they're torturing you," Saltz says. "Or they'll send you articles from everywhere ranging from The New England Journal of Medicine to the National Enquirer. Just tell them, 'Thanks, but I've got my team together and I'll follow their guidance.' If you want to commiserate and share stories with someone, fine, but if it's upsetting, just say, 'Thanks, I'm going to stop you right there. Lots of people tell me cancer stories and I don't find them helpful.'"