You've Been Diagnosed With Cancer. Now What?

Diagnosis: Cancer

Written by Alison Palkhivala
10 min read

May 28, 2001 -- The three scariest words in the English language: "You have cancer."

Carolina Hinestrosa, of Washington, first heard those words in 1994, when she was diagnosed with breast cancer at age 35.

"I was one of those people with no known risk factors -- other than that my first pregnancy was after age 30," she says, "so I was really not prepared for a diagnosis of breast cancer. Soon after I was diagnosed, my [younger] sister was also -- so now we know it runs in the family."

After undergoing breast conservation surgery and radiation followed by five years of treatment with a drug called tamoxifen to ward off a recurrence, Hinestrosa was diagnosed again last year with a second primary breast tumor.

Virgil H. Simons of Secaucus, N.J., found out he had prostate cancer seven years ago at age 48. The tumor was discovered when he took a friend's advice to have a prostate test, since he had one known risk factor for the disease -- being a black man -- and another suspected risk, being a veteran of the Vietnam War, where he could have been exposed to the carcinogen Agent Orange.

"I kind of dismissed [my friend's suggestion] because I had no symptoms, no problems, and I thought I was too young, but I was having a regular physical anyway," Simons, tells WebMD. "So I had a PSA test done and lo and behold I had prostate cancer."

During a PSA test, your doctor looks at blood levels of a substance produced by the prostate gland. Unusually high doses mean a possibly cancerous growth might be taking place in the prostate.

Hinestrosa and Simons have three things in common: They both thought they were too young to get these common cancers, they were both floored by their diagnoses, and they both chose to beat the cancer, not let it beat them. This article outlines the advice that they and other cancer experts have compiled on how to face a diagnosis of cancer for yourself or someone you love. This and other information was presented earlier this year in New Orleans at a forum hosted by the American Association for Cancer Research (AACR).

According to the National Cancer Institute, approximately 8.4 million Americans living today have cancer. It is the second leading cause of death in the U.S., behind heart disease. One in four deaths in the U.S. are from cancer.

Donald S. Coffey, MD, professor of oncology, pathology, urology, and pharmacology at Johns Hopkins University School of Medicine in Baltimore, gave a "Cancer 101" presentation at the AACR public forum. Cancer, he explained, is an imbalance between cell growth and cell death, such that large numbers of cells accumulate in one place.

If they accumulate into a ball, they form into what's known as a benign tumor, which can be cut out of the body. If they accumulate into an irregular shape, like your hand, they form a malignant or cancerous tumor, and not all the cells can be always be cut out. In that case, surgery, chemotherapy, radiation therapy, and/or other therapies may be required.

When cancer spreads, it is called metastasis. A few cells from a tumor break off and travel through the bloodstream to another location in the body, where they set up shop and start to grow another tumor. Tumors that start in one part of the body almost always metastasize in a specific pattern. For instance, breast cancer cells, metastasize first to the lymph nodes and prostate cancer cells metastasize first to the liver.

According to Carolina Hinestrosa, she was so afraid by her initial diagnosis that she let her treatment decision be influenced by what she wanted to hear.

"You're so confused, uninformed, and frightened," she says. "For me, anything that wasn't what I wanted to hear would frighten me too much. I didn't want chemotherapy because I was too afraid of that. I would side with whomever said I don't need it out of [fear and] ignorance."

Virgil Simons says his feelings about his diagnoses took him for an emotional ride. He started by asking himself, "Why me?" and being filled with self-pity. He quickly moved on to depression and thought about liquidating his assets and moving to a tropical island. The third stage he describes as "survival mode."

"You really just shut out everything and everyone around you and focus just on yourself," he says. "You think, 'I'm in a battle now, and I've got to get through this.'

"You tend to be a little tough on your loved ones and the people around you because you really can't see them as part of your life at that moment. It takes some time to get through that, but when you do, you can start focusing on your life again instead of just trying to survive."

Anyone caring for a loved one with cancer should expect the first few months after diagnosis to be extremely difficult emotionally. Don't take it to heart if your loved one behaves erratically or pushes you away. Remain supportive and available to help. Help your loved one work through the fear to make an informed decision about treatment.

Hinestrosa fought back against her fear and chose to see her cancer as a battle she fully expects to win. Faced with her second diagnosis, she is no longer afraid.

"This time, around, I think I will look at the information," she says. "If the doctor says I don't need chemotherapy, I would still go with that, but I'll be more careful about making the decision."

Simons came out of his roller coaster of emotions with a firm decision to fight the cancer battle and win -- as well as to appreciate life more.

"You have the choice of becoming very bitter or really becoming very focused and very committed," he says. "It's made me appreciate every day much more. One of the most tangible things is I stopped wearing a watch. When you wear a watch, you look at what time it is to see where you have to be. You think about something in the future rather than something in the now. The disease taught me that you've really got to think about the now and live each moment to its fullest."

According to Hinestrosa, a cancer diagnosis is a life-changing experience, and one that demands you become an expert very quickly.

"I would encourage people, once they're diagnosed, to try to become as informed as you can and engage with your physician on decisions of your treatment," she says. "If you cannot handle that, find someone whom you can trust to help you make the best decisions."

After informing herself about her options, Hinestrosa had a lumpectomy, followed by chemotherapy and radiation, after her second cancer diagnosis. She finished her second round of treatment in November 2000 and is now considering other therapies.

Simons explored his options and decided to have his prostate surgically removed. Seven years later, he remains cancer-free.

"You have to be very proactive," says Simons. "This is not a disease where you can just say to the doctor, 'fix me.' There are too many options, stages of the disease, and modalities within the disease. ... You really have to engage in a dialogue -- not only with the first doctor you talk to but many, many more. Get the opinions that will help you make an informed decision based on your lifestyle and what you want to achieve."

Caregivers should be ready to help a loved one with cancer navigate the healthcare system and ensure that his or her needs are met, from getting the necessary information to ensuring that someone is allowed to stay with him or her during overnight stays in hospital.

Any information on cancer you use to make treatment choices should be from credible institutions, says Hinestrosa, such as respected universities or organizations like the National Cancer Institute or the American Cancer Society. She also recommends asking for evidence to back up anything you're told, even if you're told this information by your physician.

According to Simons, doctors are creatures of experience. That means a surgeon is more likely to see surgery as the best option for your cancer, while a radiologist is more likely to think radiation will help. Consider these biases when making decisions on treatment and get the opinion of several experts.

"If you have a doctor who is not willing to establish a dialogue," says Simons, "get another doctor."

Clinical trials are the studies conducted to determine whether newer cancer therapies are better than older ones. By participating in a clinical trial, not only are you helping science advance in terms of cancer treatment, but you are also ensuring that you receive the most up-to-date therapy available.

Currently, only 3% of cancer patients are put on clinical trials, says Anna D. Barker, PhD, president and CEO of Bio-Nova Inc., as well as a member of the board of directors at AACR, and this number must be increased if research is to move forward.

If you would like to participate in a clinical trial, ask your doctor. There's a web site called Emergingmed that can help you find a trial that's right for you; you can find it at www.emergingmed.com.

Your initial reaction may be to withdraw after a cancer diagnosis, but Hinestrosa recommends that you reach out and seek emotional support.

"It's very important that you look after not only the physical aspect of your disease but the mental too," she says. "If you are empowered and take care of the whole person, you can make better decisions and adjust better to the consequences of those decisions."

Simons says emotional support is key and that family members should get involved with your cancer care by talking to doctors and helping in decision-making.

If you would like the support of other cancer survivors, contact your local chapter of the American Cancer Society or check out their web site at www.cancer.org. Hospitals and local community centers also run support groups for various types of cancer. More and more grassroots community groups are popping up in an effort to provide people with cancer with information and support.

"What has worked for me is to stay involved," says Hinestrosa. " I see it as a duty to my family and other people who are less well than I am -- or who may become sick with breast or any cancer -- to work for them and bring a sense of urgency about what is happening, that there are many lives lost to cancer that shouldn't be lost."

Hinestrosa started and is now executive director of a nonprofit group called Nueva Vida, which covers Washington and the surrounding area. It provides support groups, peer counseling, outreach programs, and breast cancer screening to Latinas. The groups is also developing a resource center. Hinestrosa works directly with her community and also does advocacy work at the national level, giving wake-up calls to researchers and political decision-makers that the time to fight breast and other cancers with all we've got is now. You can reach Nueva Vida at (202) 223-9100.

Hinestrosa recommends that cancer survivors get involved at a level they are comfortable with. She says community action helps you realize you can have a say in what decisions are made about cancer research.

Simons also feels that helping other cancer survivors is a way of showing his appreciation for overcoming his disease. His experiences trying to obtain information about prostate cancer opened his eyes to the need for easy-to-access and reliable information about cancer for the general public. In an attempt to fill this need for prostate cancer patients, Simons wrote the book The Online Guide to Fighting Prostate Cancer, which is now available in its third edition and is being revised for a fourth edition to be released next year. He also founded the nonprofit Prostate Net, an online guide to prostate cancer available at www.prostate-online.com.

Simons is involved with cancer research at the Department of Defense as well as with the American Cancer Society. He has written, lectured, and been on TV talk shows to raise awareness about cancer risk and the need to take action.

The good news about cancer is that 50% or more of those who have cancer today can expect to live five years or more, and many are cured.

Experts agree that the next few years will hold remarkable advancements in cancer therapy in the form of genetic treatments that target cancer cells but not normal cells, new vaccines, new combinations of therapies, and new drugs that can be added to chemotherapy drugs to help reduce side effects.

"Everyone has assumed for so many years that [cancer is] a death sentence, but nothing could be further from the truth now," says Barker. "There are five greater words than 'you have cancer,' which are 'together we can cure cancer.'"

Alison Palkhivala is a freelance medical writer working in Montreal, Canada. She has been writing about medicine and health care since 1994.