Helen's Story
Helen's Story About a Clinical Trial for
Inflammatory Breast Cancer

Helen is 35 years old and has inflammatory breast cancer. This type of cancer makes the breast look red and swollen. The skin near the tumor feels warm. It is a fast-growing type of cancer, so Helen needs to start treatment soon. Helen met with her traditional healer and they prayed together. She did not want to tell her children about the cancer yet.

She lives in the city and must rely on Medicaid to help her get help. She has a lot of trouble talking with the woman from Medicaid. Helen normally has trouble asking others for help, but especially to a non-Native stranger. After having problems with the Medicaid office, she calls the NACR Native Patients Advocates toll free number (1-800-537-8295). Terri, a Native Advocate, talks with her about her situation. Terri also calls and talks with the woman from Medicaid who had talked with Helen earlier. Terri explains the situation and helps fill out the paperwork for Helen to get treatment services. Terri also mails Helen a long-distance calling card to help her make calls to the cancer center (100 miles away).

Terri finds out that there is a cancer treatment trial for the type of cancer Helen has. It is a trial that uses three different chemo drugs that are the standard treatment. These three drugs are used for the women who are in the control group. The "experimental" group for this trial also uses the same three chemo drugs as in the standard treatment. But it also uses a new 4th drug with the 3 other drugs to see if the 4th drug makes the 3 drugs work better.

Helen has a lot of questions. She has been told that these "trials" are "studies" and believes that she will only be given a sugar pill (or placebo).

Is it true that in cancer treatment clinical trials the participants who are in the control group are only given a sugar pill (or no real drugs or treatments)?

This is not true for breast cancer treatment trials. At the present time there are only comparisons between a standard treatment with a treatment that is thought to possibly be better than the standard treatment.

Helen is worried about the costs of this trial. She doesn't know how she could pay for the drugs or the appointments. Terri talks with the Medicaid woman and learns that the office visits can be paid for by Medicaid. Terri also talks with a woman from the "Medicines for you" web site. They were not able to help since these were drugs included in a clinical trial. Terri then called the Pharmaceutical Companies that make these drugs. After several phone calls, they agreed to give Helen the drugs as part of the clinical trial for free. Terri calls the Cancer Center to set up an appointment for Helen to talk through some of the informed consent issues for the next day.

Helen is going to need someone to drive her to the cancer center to discuss the clinical trial. It has to be soon because she needs to be enrolled in the trial within 14 days of her diagnosis. She calls her 20-year old daughter who lives on the Rez. Her daughter agrees to drive to the city, pick up Helen and drive her to the Cancer Center the next day for her appointment.

Helen is nervous and hasn't been able to tell her daughter much about her cancer during the drive. After they reach the cancer center, Helen calls the toll free number to talk with Terri. She has her daughter listens in on the pay phone at the hospital. Terri agrees to be close to the phone during the time of the appointment in case the study recruiter, Helen or her daughter needs help talking with one another.

Helen and her daughter meet with the study recruiter, Margaret. Margaret explains what will happen to Helen if she decides to take part in the study. She includes the potential benefits and risks of taking the 3 chemo drugs and the 4th new drug. She also explains that Helen will need to come in to the Cancer Center every day for the first 7 days.

Helen and her daughter cannot afford to pay for the gasoline to drive back and forth 200 miles each day for 7 days. They call Terri. Terri finds them a hotel for free that is close to the Cancer Center. They can stay there for a week.

The daughter calls her auntie, who is raising the younger children (14, 16, and 18 year olds) on the Rez. The auntie agrees to talk with the children about Helen and the cancer. The daughter also calls her neighbor to have her watch her children while she is at the Cancer Center with her mother for the next week.

Now that the lodging and the family concerns are taken care of, Helen says she wants to do the trial. She signs the consent form.

Helen and her daughter go check in at the hotel. They call Terri and ask her to help them decide what questions they should be asking before starting the trial the next day. Terri gave them a list of questions other Native patients have asked their providers.

Which of these questions would you want to ask if you were Helen?

  1. Will the treatment make me sick?
  2. How do I know I am really getting medications and not just being experimented on?
  3. Will the drugs make me sick?
  4. What can I do to not get nauseous / or have an upset stomach?
  5. What types of foods should I eat during the treatment?
  6. What types of drinks and how many should I drink while I am taking the treatment?
  7. Will my hair fall out?
  8. How will the drugs make me feel (e.g., tired, depressed, sick)?
  9. After the first week of treatment is over, when do I need to come back?
  10. Is there any special way I need to prepare for my next appointments?
  11. How often will I need to return to the Cancer Center?
  12. About how long is each appointment when I have to return?
  13. If more drugs are prescribed by the provider, how may I get them for no cost?
  14. Am I likely to survive this?
  15. How soon before I start to feel better?
  16. How soon before I quit worrying about dying from this cancer?
  17. What should I tell my children?

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