October 7, 2008: Alexia Dinh, program coordinator for BPSOS’ Health Awareness and Prevention Program (HAPP), shares the wisdom gained with experience doing outreach around health issues in the Vietnamese-American community:
A few months ago, my right breast started hurting. At first, I put off getting tests because I’m young and healthy. Also, there’s no history of breast cancer in my family, and I know it’s normal to have breast sensitivity prior to and during my period. After my period had come and gone but the dull ache persisted, I did a Breast Self-Examination (BSE), an examination that involves looking at and feeling your breasts. This is usually a frustrating experience for me because I feel things, but I am not really sure what they are. The more regularly I do a BSE, the more familiar I become with changes in my breasts. When there is a change, I notice it right away, which in this case, I did! I found that my right breast was lumpier than usual, and to my surprise, there was a noticeable marble-sized lump in the right corner.
I immediately phoned my gynecologist. She assured me that everything was fine. She said it’s normal for women my age, that is, in their child-bearing years, to have breast fibroids. This is also known as fibrocystic breast disease, which creates benign (non-cancerous) movable, rubbery nodules that cause painful swelling at or near the breast’s surface.
I have to admit I was skeptical of my doctor’s assessment. It’s not that I didn’t trust her; it’s just that I had recently had a client who was experiencing stomach pain and persistent bleeding. She told me she felt fine and was reassured when she consulted with her friends. They told her she had nothing to worry about, and that it was probably just menopausal symptoms. She believed her friends and did not consult with a doctor.
Not long after, she passed out and awoke in the hospital with the news that she had stage-three cervical cancer. Luckily, she has insurance through her husband. At present, she is going through chemotherapy. At stage three, she has only a 30% chance of living, given the five-year survival rates for cervical cancer. In some respects, she’s still much luckier than a lot of women. Many do not find out about their condition until the fourth and final stage of cervical cancer, which only has a 15% survival rate. Two days later, I was sitting in my gynecologist’s office to follow up on my problem. I wanted to make sure that my fate wouldn’t be the same as my client, who had ignored her symptoms and was paying a terrible price.
After a Clinical Breast Examination (CBE), a physical examination of the breast done by a health professional, she stated that my right side was much lumpier than normal, but that everything was fine. She did not see a reason for concern. I didn’t feel at ease, however, so I asked her for a referral to get an ultrasound imaging of the right breast. She gave me the referral plus a few pamphlets to read. Prior to this experience, I’d read a lot about breast cancer, but never about breast fibroids. A few days later, lying in the ultrasound imaging office, the sonographer again told me I had nothing to worry about. She said that my right breast, like me, was young and healthy. She made the same suggestions my doctor had previously made for relieving pain. Avoid caffeine, chocolate, and foods high in salt, all of which aggravate pain and swelling.
Two weeks later, I was once again sitting in my doctor’s office, this time for a follow-up on the ultrasound. She said she’d looked at the film and everything looked normal. To help relieve the ache, she wrote a prescription for evening primrose oil, which is extracted from the seeds of the evening primrose plant. Studies in Europe have found that evening primrose oil relieves breast fibroid pain.
It’s been eight months since I consulted my doctor and a specialist. Even though I’ve been following their advice, I’m still experiencing the dull ache in my right breast. I’ve been told that I’m one of those unlucky women who suffer from breast fibroids, but I’m not so unlucky because I’m armed with facts. I have done what I needed to do, and I have peace of mind. I continue to do BSEs and have regular check-ups with my doctor. My advice to all women is this: If you feel a lump in your breast, if you’re suffering from any pain that is persistent or abnormal bleeding, never leave it alone without consulting your physician as soon as possible. You know your body best! You do not want to become a statistic like the woman who listened to her friends’ assumptions. She has almost lost her life to cervical cancer.
Other recent events in the media and in my work have contributed to my paranoia about health issues and cancer. Christina Applegate, a well-known actress, was just diagnosed with breast cancer at the age of only 36. This points to the need for mammograms, despite some confusion over the right age to begin them. Experts don’t agree on the frequency with which women should have regular mammograms. The American Cancer Society recommends that women age 40 and older have a mammogram every year, while the National Cancer Institute recommends that women age 40 and older have one every one to two years. In Christina Applegate’s case, she is considered high risk because of family history of breast cancer. Her mother, Nancy Priddy, is a repeat breast cancer survivor. In an exclusive interview with ABC News, I learned that Christina Applegate started getting mammograms six years ago, after she turned 30. If she had waited until she was 40 to have her first mammogram, it might have been too late.
On August 25, while I was in the middle of filling out paperwork for my registered clients for their mammograms on the George Washington MammoVan, a woman showed up thinking she could get the mammogram on that day. After having explained to her that the 25 women getting their mammograms that day had pre-registered and we did not talk walk-ins, she started crying and explained to me that she had been experiencing extreme breast pain and discharge for the last six months. She hadn’t been to the doctor because she was a new immigrant without any insurance. She explained that her husband works outrageous hours at a restaurant and that she was taking care of their two little girls while babysitting and cooking part-time for another family. She was very upset and worried that if something happened to her, no one would take care of her young daughters.
I felt so bad that I couldn’t help here right then and there. All I could do was take her information and promise her that I would do everything I could to help her. Even though I tried to explain to her that George Washington did not take unregistered patients, especially patients with symptoms, I knew she didn’t register anything I said. She understood that she was frightened and desperate for reassurance and when she cried, I couldn’t hold back my own tears.
Today, I am happy to report that she is scheduled for her first Pap smear and CBE. From this appointment, she will get a referral from the gynecologist for a mammogram. Because of her circumstances, I have secured a diagnostic mammogram appointment for her. All we are waiting for is the mammogram referral, because this woman is only 37 years old.
I’ve been in my HAPP program coordinator position for less than two years, but I’ve heard of over six community members, women 45 year old and younger, who lost their battle with cervical cancer. There are countless more women who found out they had breast or cervical cancer only because it was in its last stage. Vietnamese women have the highest incidence and death rates for cervical cancer (43 per 100,000) of all Asian groups studied (five times higher than the rate among Caucasian women). However, Vietnamese women tend to have the lowest rates of cervical cancer screenings of all ethnic groups. With a prevalence of 37.5 per 100,000, breast cancer is the second leading cause of death after cervical cancer among Vietnamese women. I knew that the rates of breast cancer were high among Vietnamese women, but I was completely shocked that at one mammogram screening day I did this year, of the 18 women who had the mammogram, nine women’s results came back abnormal. That’s 50%!
When I first started working in this program, I did not have half the clients I have now. A preventive health screening program was such a hard program to promote. I tried so hard to reach out to the community. I showed up to every event with my flyers and brochures. The uninterested look, the “Is she crazy look?”, the “Let’s hurry and walk by so she can’t give me a flyer’ walk, all hurt, and it especially hurt when there was a dead tone at the other end of the line every time I attempted a cold call. For the first two months of my program, I believe I cried almost every other day. Everyone I called politely thanked me for calling them and for trying to help, but said they didn’t have time and didn’t think it was necessary.
After two unsuccessful months of trying to tap into the Vietnamese community, I started writing articles and going on air. My article about a friend’s aunt who died from cervical cancer at a very young age got a few of my readers’ and listeners’ attention. One phone call turned into two and two turned into three. That was the start.
Today, when a client calls me, the education part of my program begins. I can start to give them the facts, explain the importance of preventive screenings, and explain their options if they don’t have insurance. Word-of-mouth advertising has been the best form of advertising for my program. Once my breast and cervical cancer program gathered some momentum, I started concentrating on Hepatitis B and liver cancer.
Vietnamese men have the highest rates of liver cancer of all racial/ethnic groups. The incidence of liver cancer among Vietnamese Americans is 11.3 times higher than the rate for Caucasian Americans, that is, 41.8 per 100,000 people. I have been very fortunate to have had the opportunity to work with Dr. Sang Tran. Dr. Tran cares so much for our community. He has helped my program tremendously by providing free Hepatitis B/C screening days for my registered clients. We have collaborated on a total of eight screening days, each taking three hours at his office.
We have screened a total of 150 men and women. Of them, 13 tested positive for Hepatitis B and three tested positive for Hepatitis C. These numbers does not include clients who registered but already knew they were positive and wanted to check. These numbers also do not include clients I have spoken with who regret passing the disease to their wife. Or as in the case of one woman, to her dear child. Both she and her husband have Hepatitis B, but she is not really sure why their eldest child tested positive for Hepatitis B, but not their two younger children. After asking her family history, I learned that her eldest was born in Vietnam, while her two youngest were born in the United States. She said she remembered having to go the hospital a lot, and was given some reading materials by the hospital staff. She later learn that her eldest got Hepatitis B through vertical transmission, also known as mother-to-child transmission, which refers to transmission of an infection, such as HIV, Hepatitis B, or Hepatitis C from mother to child during the period immediately before and after birth.
Before working on the Hepatitis B program, I didn’t know that so many Vietnamese were infected with the Hepatitis B virus. What was even more surprising to me was the number of people with infected family members or family members who had died because of liver cancer. Finding inspiration from these community members, I partnered with Dr. Tran and Gilead Sciences, a research-based biopharmaceutical company behind Hepsera, a once-daily oral prescription medicine used for the treatment of patients with chronic Hepatitis B. Together, we now provide seminars and educational materials in Vietnamese for the community.
Again, I will say that this program is not an easy program. But what I can honestly say is that I love what I’m doing, paranoia and all. It is not just a job to me. It is a passion and a love for the Vietnamese community. There are so many programs and benefits available, and I’m grateful to have the opportunity to serve the Vietnamese community by connecting them to these resources.