People's Stories

My prostate cancer was diagnosed last year. I've been treated, and I'm optimistic that I'll be okay now. But choosing my treatment was hard, because no one could tell me for sure if I had the kind of tumor that grows slowly, or the kind that moves fast.

It has long been recognized that most prostate cancers progress quite slowly — so slowly, in fact, that some tumors confined to the prostate may not even require treatment. But a subset of prostate tumors are aggressive, causing many of the deaths from this disease. As a result of prostate specific antigen (PSA) screening for prostate cancer, more men are now being diagnosed at earlier stages of disease. Since prostate cancer treatment can seriously affect sexual, urinary, and bowel functions, it is critical to be able to distinguish between tumors that are potentially life altering or life threatening, and those that are not.

Identifying more refined indicators of prostate cancer prognosis is a high priority for NCI research. Currently, prostate cancer is evaluated based on serum PSA level and measures of tumor stage and grade. But researchers are now studying a broad array of markers to find those that will tell which tumors have undergone the full set of genetic and biochemical changes that lead to metastasis, and whether cancer cells have already escaped from tumors that appear to be localized. Several of these markers are showing promise, and may also help predict a man's response to treatment. Having this more precise profile of individual prostate tumors will be essential to enable men to choose the treatment with the best chance of cure and the fewest possible side effects.

I'll continue getting regular check-ups, of course, to watch for any signs of recurrence. My doctor says that for some reason, when prostate cancer comes back, it tends to show up in the bones.

Prostate cancer is one of several cancers that typically spread to the bones, causing bone degeneration and pain. Researchers are aggressively pursuing several leads to determine why this is so. One hypothesis is that bone provides a favorable growth environment for prostate cancer cells, which randomly "seed" the bone marrow from the bloodstream. Another theory is that prostate cancer cells may adhere more readily to the bone matrix, specifically to bone marrow endothelial cells, than to other types of tissue. There is also convincing evidence that prostate cancer cells may reach the spine through a connection between veins surrounding the prostate and blood vessels surrounding the vertebrae.

Research in this area is accelerating. As the mechanisms underlying bone metastasis in prostate cancer are better understood, we will be poised to develop new ways to prevent it, and to effectively treat men whose cancer has advanced.






Detecing Melanoma


As a kid, I was outside all summer. I got sunburned every year. Later, I tanned because I thought it looked healthy — and sexy. Who knew anything about melanoma?

The incidence of malignant melanoma in the U.S. is increasing, due largely to the sun exposure patterns of populations now reaching older ages. By the turn of the century, the lifetime risk of malignant melanoma in this country is expected to reach one in 75.

Because of my coloring and sunburn history, my doctor taught me to check regularly for lesions that could be trouble.

NCI actively supports melanoma prevention efforts, providing information to physicians and the public on how to recognize suspicious moles — those with irregular borders or coloring, large size, or obvious change, or moles that itch or bleed — and how to conduct a self-examination.

At first I resisted doing the self-examinations. I felt like I was being a hypochondriac. But one day I saw a mole on my back that definitely looked different than before. It turned out to be an early melanoma. I had surgery to remove the mole and some tissue around it. I didn't need any other treatment.

Surgery alone can cure many patients whose melanoma is not advanced. The chance for cure is best if the tumor is thin — meaning it has not penetrated deeply into the surrounding tissue. Fortunately, the percentage of patients with a thin lesion at the time of diagnosis has increased over the past 20 years. This improvement has resulted from greater public awareness of melanoma in recent years and more vigilant self-surveillance by individuals who know that having sunburns in childhood, fair skin, and more than an average number of moles all increase melanoma risk.

Could my melanoma come back? I know it could, but I understand there are new treatments right on the horizon.

Studies are underway to find new drugs and drug combinations that can kill melanoma cells throughout the body more effectively than the current standard treatment. Drugs to enhance the immune system, both alone and in combination with cell-killing chemotherapy drugs, are also being studied in high risk patients. One such therapy, high-dose interferon alpha-2a, has now been approved for post-surgical therapy in high risk melanoma patients.

In addition, several melanoma vaccines are under development. Their goal is to stimulate an immune system attack on the melanoma cells by teaching the immune system to recognize certain molecules on the surface of the tumor cells. A recent study has shown that it is possible to induce a vigorous immune response even in patients with many melanoma tumors.

Research is also progressing to assess the risk of metastasis, especially in melanoma patients with thicker lesions. Several techniques are now available to detect microscopic metastases and identify melanoma patients who would benefit from systemic therapy. Since 1994, two hereditary melanoma genes (CDKN2 and CDK4) have been identified in a small proportion of families, and are expected, in the future, to help predict individual melanoma risk in families with a history of the disease. They may also help us understand melanoma that occurs in people with no such family history.

I understand now that I unknowingly increased my risk for melanoma. You can bet I always use sunscreen now, but I asked my doctor — is there anything else I can do?

This is an important question, since once someone has had melanoma they are at an eight-fold increased risk of developing melanoma again. So, it is important to:

  • avoid sunburn (in addition to using sunscreen),

  • perform self-exams monthly,

  • get routine exams from one's health care provider every six months to one year, and

  • urge close relatives to be examined for melanoma, since one in 10 melanoma patients has a family history.

An NCI-sponsored review of recent research indicates that sunscreens alone are not sufficient to guard against malignant melanoma. Wearing protective clothing like long-sleeved shirts and hats and avoiding the midday sun also are important parts of a safe-sun strategy.






Modifying Breast Cancer Risk: An Interview


You counsel women with genetic alterations that raise their risk of breast cancer. Naturally, women are very upset to learn they have an altered gene, especially if there's already a family history of the disease. But what do we really know about risk factors for breast cancer?

Our understanding of breast cancer risk factors continues to improve. For example, we have discovered that certain alterations in the BRCA1 or BRCA2 genes — gene changes that occur somewhat more often in families at high-risk for breast cancer — confer an increased risk for breast cancer, although this risk is less than originally thought. In addition to these gene alterations, factors that indicate higher than average breast cancer risk include:

  • A personal history of breast or ovarian cancer

  • Having a mother, sister, or daughter with the disease

  • Having two or more close relatives (including first cousins) with breast or ovarian cancer histories

  • A diagnosis of premalignant breast disease

  • A history of two or more breast biopsies.

Are there other factors that raise breast cancer risk?

Other factors believed to influence risk are: more than 75 percent dense breast tissue as indicated by a mammogram, early age at menarche, first birth after age 30, and late menopause. These last three factors affect a woman's lifetime exposure to estrogen, which promotes normal breast cell growth and development throughout life and can promote breast tumor growth in women who may be predisposed due to genetic or environmental reasons. In addition, women must remember that their breast cancer risk increases as they age.

Does this mean women with these risk factors are certain to get breast cancer?

Importantly, having one or more risk factors does not mean a woman is certain — or even likely — to develop breast cancer. Among women with a strong family history but no other risk factors, three-fourths will not develop the disease. At the same time, not having known risk factors does not guarantee freedom from breast cancer. Most women who develop breast cancer do not fall into a known high risk category.

What can a woman do to minimize her risk of breast cancer?

Although many breast cancer risk factors cannot be changed, research indicates that women can choose behaviors that may modify their impact. It is becoming clear that weight gain after menopause raises breast cancer risk. A recent study of Asian American women found that weight gain in the decade immediately preceding breast cancer diagnosis most predicted breast cancer risk. Recent weight loss reduced risk in all age groups compared with women whose weight did not change. Similarly, an NCI study of 95,000 nurses found that gaining weight raised breast cancer risk in the group of post-menopausal women not taking estrogen supplements. Estrogen levels are higher in heavier women because estrogen is made by fat cells as well as the ovaries.

Can diet affect a woman's risk?

Questions remain as to whether specific dietary elements may raise or lower breast cancer risk. For example, research on the role of dietary fats now suggests that monounsaturated fats (found in olive, nut, and canola oils) do not increase breast cancer risk substantially, while polyunsaturated fats (in seafood, soybean, corn, safflower, and sunflower oils) may raise risk. There is controversy about whether or not saturated fats in meat and dairy products, known to contribute to heart disease, raise breast cancer risk in post-menopausal women. Weight gain as an adult does raise this risk.

Another element of diet — alcohol — has been shown to raise breast cancer risk among women with higher levels of regular consumption. This may be due to the fact that alcohol raises estrogen levels. But some scientists think that one drink per day may provide substantial protection against heart disease, the cause of far more deaths in women each year than breast cancer, with only a very small added breast cancer risk.

Are there any medical interventions to prevent breast cancer?

New findings indicate that the anti-estrogen drug tamoxifen can prevent breast cancer in high-risk women. However, since tamoxifen can have serious side effects, the decision to take it must be made by each woman in consultation with her doctor. More study is needed to assess tamoxifen's preventive value for other groups of women.

Is screening important?

Mammography does not prevent breast cancer, but it is an important tool for minimizing the risk of dying from the disease. Although early detection of breast cancer by mammography does not assure that a woman's life will be saved, the five year survival rate of women with localized disease is now 97 percent. Because current mammography still may miss up to 25 percent of breast tumors in women in their forties, compared to about 10 percent of women older than age 50, researchers are working hard to improve breast imaging technology.

Any final thoughts?

The more we know about breast cancer risk factors and how they may be modified, the more women will be empowered to minimize their risk of this disease. Like them, I am encouraged by new discoveries in this area.





Living with Cancer


Ten years ago, I was diagnosed with colon cancer. I found myself trying to make life-changing decisions about my care in a language I barely understood. I never knew if I had enough information, the right information, or if I even knew what questions to ask.

The journey of every person with cancer is unique. NCI knows that patients and their families need rapid access to understandable, unbiased cancer information to become educated about their disease, to make informed treatment decisions, and to find sources of care and support. As a central part of its mission, NCI provides millions of people each year with an array of print, audiovisual, and electronic information services. At the same time, physicians and other health professionals have recognized the need for better tools, tailored to the needs of patients with different cultures and educational levels, to help explain complex treatment options at the bedside.

When I was first treated, I had a lot of pain from the surgery and an awful infection at the colostomy opening. From the chemotherapy, I was nauseated all the time and so fatigued I could barely get up. Some days I knew I would make it through, but other days were total despair.

In recent years, intensive research has yielded effective treatments for some of the most dreaded side effects of cancer treatment. For example, while cancer or its treatment may cause pain, in the vast majority of cases, it now can be relieved through a variety of medication strategies and other techniques. NCI continues vigorously to sponsor research to discover even more effective ways of controlling pain. Clinical guidelines for managing cancer pain were established in 1994, and NCI has actively supported projects to educate patients and physicians about pain control and to encourage the guidelines' implementation in community practice.

Medications are now available that effectively relieve the debilitating vomiting associated with some cancer therapies. Similarly, treatment-induced anemia, the principal cause of fatigue among cancer patients, can now be reversed with medications. Our ability to control these difficult side effects has greatly improved both patients' willingness to undergo treatment and their quality of life. In addition, by enabling patients to tolerate stronger chemotherapies than would otherwise be possible, these advances have also contributed importantly to progress in treatment.

The people at work were very supportive while I was in treatment, but when I came back to work, I found I had to "prove myself" all over again, even though I'd been doing this job for three years and came back to a full work schedule.

The end of treatment can bring new and unexpected challenges for patients. In two recent studies, most of the cancer survivors surveyed felt their job helped them maintain emotional stability during treatment. But the studies also found that survivors still face bias from both employers and co-workers, who think they will no longer be able to do their job as well or will need special accommodations. In fact, most survivors are able to resume a full work load and have no more work absences than other employees.

Since the surgery and chemotherapy, I don't feel the same about myself. It has been hard to re-establish intimacy with my spouse. You know, we've both read a lot about cancer, but when you're looking each other in the eye... well, that's different.

As a result of cancer or its treatment, survivors may experience unsettling changes in body image because of surgical scars, skin or hair changes due to radiation or chemotherapy, arm or leg swelling called lymphedema, or the loss of a limb or breast. Some chemotherapies can also dampen libido and cause fatigue that may last well after treatment is completed. Depression related to these changes can also hinder efforts to restore, initiate, or maintain intimate relationships. The importance of these issues to survivors' overall quality of life is increasingly recognized, and research efforts to find ways to help survivors make positive adjustments to body image and other changes are gaining momentum.

I had a recurrence a month before my five year anniversary. My first thoughts weren't, "I'm going to die." I thought, "Oh no, more surgery, more treatments, more complications." And I was concerned about putting my family through all of that again.

Some survivors report that facing the challenge of cancer a second time is harder than the first. NCI's Office of Cancer Survivorship was established to promote research on the myriad physical, social, psychological, and economic issues faced by survivors throughout their lives, with the goal of improving quality of life for this growing population. NCI also recognizes that recurrences or second cancers can be equally devastating to family members, who themselves have struggled to move forward after a loved one's battle with the disease. Research on the health and psychosocial effects of cancer on family members is in its early stages.

Some people with cancer hesitate to go to a support group, but once you go, you know there's a place where you can go to talk about your concerns. As wonderful as families and friends can be, no one can understand like someone who's been there.

Support groups provide strength and understanding to many thousands of cancer survivors. In communities across the country, support groups have been formed to meet the needs of child and adult survivors with particular types of tumors, diverse cultures, or other special circumstances. Groups just for family members have also been established. For some survivors, cancer support activities — leading peer support groups, writing newsletters, or becoming advocates — become an integral part of their recovery and life after cancer. A few studies have suggested that support group participation may even extend survival.

There's more information and support than there was when I was diagnosed, but it seems to me there is still a long way to go to help patients and families cope with their disease.