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Breast Cancer in Latina Women

Most Latina women presenting for care in the city hospitals, during my years as a navigator, did so with advanced breast cancers.

Few of the Latina women had a history of getting mammograms. Many had cancers that were more aggressive and harder to treat.

In speaking with Latina ladies, they shared language barriers, socio-economic reasons, lack of education, lack of awareness of breast cancer, and the need for annual screenings as reasons for not seeking care.

Other ladies gave cultural reasons, such as women touching themselves being a taboo. Others said fear kept them from coming for care…fear of disease, fear of the treatment, fear of the loss of their hair, breast, and femininity. Fear of the loss of a husband, or significant other was a major issue. Some feared that breast cancer was a punishment for something they did earlier in life.

Recent studies and statistics show that Latina women have lower breast cancer rates than white women. However, they are more likely than whites to be diagnosed at a later stage, when the cancer is more advanced and harder to treat.

Yet, even with early diagnosis, Latina women are more likely to have tumors that are larger and harder to treat than white women. They also seem to get breast cancer at younger ages. Researchers are not sure why these differences happen.

Despite increased breast cancer awareness outreach efforts in Latina communities the Nation Cancer Institute (NCI) reports that breast cancer is still the most commonly diagnosed cancer in Latina women in 2013.

In 2007, NCI reported that despite equal access to health care services, differences persist in the size, stage, and grade of breast cancer for Hispanic women compared with non-Hispanic white (NHW) women. The study compared 139 Latina women and 2,118 NHW women with breast cancer who were all established members of the Kaiser Permanente Colorado health plan. The Latina women were diagnosed at a younger age; at a later stage of disease; with larger, higher grade tumors; and with less treatable estrogen-and progesterone-negative tumors, reported the investigators led by Dr. A. Tyler Watlington at the University of Colorado Health Sciences Center.

“The results of this study confirm those of many previous studies that breast cancer presents differently in Latina women,” the researchers noted.

“Previous research has suggested that the differences may be due to socioeconomic factors, especially lack of or inadequate health insurance and less access to care among low-income Latina women. However, the current study shows that “these differences were apparent even among a group of Latina women with equal access to care and similar health care utilization,” researchers  added.

Outreach in post secondary schools, that have large enrollments of  young Latina women, is needed if we are going to reach Latina women when they are in their early 20’s and 30’S. We need to help them realize that early screenings offer them the best possible outcomes if a breast cancer found. We also need them to carry the message to older women in their Latina communities. These young women can be a powerful force in getting older Latina women to get screened.

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Regrets About Having a Bilateral Mastectomy When Only One Breast Has Cancer?

breastMuch is being written these days about a growing trend in which women diagnosed with breast cancer and needing a mastectomy are opting to have the healthy breast removed as well.

While each woman chooses for her own reasons, many women  share some common motivations in their choice to have the non-cancerous breast removed. Choices range from having the greatest possible peace of mind by reducing the chance of recurrence to the cosmetic considerations of perfectly matched, balanced, reconstructed breasts covered by insurance.

Other like myself, who’ve had a previous breast cancer, just want our breasts gone. They have caused us too much anxiety with extra screenings and  biopsies to check out every unexplained change.

Years after my second cancer, a friend asked if I had any regrets about having a bi-lateral mastectomy with no reconstruction. My answer was a resounding NO!

Why? I had no control over getting breast the first or second time, but I did have the power to make a choice that would give me the greatest peace of mind. And that is what I did. I chose to have the breast with cancer removed and the other breast, the site of the first cancer 10 years earlier, also removed.

Why no reconstruction? It didn’t seem necessary to me. I didn’t want anymore surgery than I had to have to rid myself of cancer. I was and still AM fine with being flat chested, just as I had been until the birth of my child. I was never in to showing cleavage. I was well aware that breast prostheses do a good job of filling out clothing, and when they come off at night…I can comfortably sleep on my stomach!

Her question got me thinking about all of the women who’ve made the same choice I made after being diagnosed with cancer in one breast…the decision to have the other breast removed. What, if any were their regrets?

My research turned up a paper about a survey of women who chose a bilateral mastectomy that answered my question. The paper reports on a survey conducted at the Mayo Clinic in Rochester, Minn., in which hundreds of women, who chose a bilateral mastectomy, were each asked about having any regrets about the decision to have a healthy breast removed along with the breast that had a cancer.

The survey included women who had a cancerous breast and a healthy breast removed between 1960 and 1993. They were surveyed 10 years later to determine if they had regrets or were still satisfied with their choice. They were also asked if they would make the same decision again. After another 10 years, the majority were surveyed once more. Complete results were available for 269 women.

In the initial survey, 86 percent said they had no regrets about their decision and 95 percent said they would repeat the procedure if they had to again. In the 20-year follow-up, 90 percent expressed satisfaction with their decision and 97 percent said they would repeat it.

Previous research found that women who had undergone  a prophylactic  mastectomy (removal of the healthy breast along with the breast with cancer) were satisfied with their decision soon after the surgery. The outcome of this survey  documents that women who were comfortable with their decision after the surgery are still comfortable with their choice many years later.

I can relate to the women in the survey that stated they would choose a bilateral mastectomy again, even though they admitted to have experienced negative body image and feelings of a loss of femininity. Having no regrets about a decision to have both breasts removed doesn’t mean there are no feelings about having to make such a decision.  There is a mourning period. It takes time to accept the change in one’s body image.

For more information about prophylactic mastectomy, visit the U.S. National Cancer Institute.

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What I Learned from Two Breast Cancers

breast cancer

A diagnosis of breast cancer comes with many lessons. All cancers do. Here are just a few :

  • You don’t have to accept the unacceptable. You can find a treatment center, with healthcare personnel that treat you with dignity from the receptionist to the surgeon, the oncologist and every other member of the breast cancer treatment team.
  • Don’t choose a treatment center because it is convenient; choose based on reputation for excellent breast cancer care and a site visit.

  • Be a partner in your care. Ask questions, and keep asking them until you understand what your recommended breast cancer treatment plan is going to be. Have you pathology report explained to you. Get referrals for other services you might need such as counseling, nutrition, genetic testing.
  • Ask to be put in touch with a survivors group that can give you pointers on preparing for the practical issues that will arise, such as shopping for clothing for after surgery or during radiation, and/or a wig, if chemo is a part of your treatment.

  • Wearing wigs takes practice to make them look natural. A good wig gal guarantees never having a bad hair day!
  • Life doesn’t stop for you or anyone else when you have cancer. There are still things that have to be done and good things to be enjoyed.
  • The people who are there for you during your breast cancer treatment may come with pleasant surprises and a few disappointments.
  • Avoid the toxic person who looks at you as if you have hours to live.  Also avoid the one who wants to know every detail of your experience, and then wants to tell you what happened to someone she knows who has breast cancer; it is usually a depressing story!

  • Drop the ones  who need to tell you what you should be feeling and how you should be coping with your breast cancer.
  • Pick a few close friends and family members who are non-judgmental, good listeners and let them be the people you turn to when you need to talk. It helps if they have a sense of humor.
  • Let people help. Some people are not good with words, but they would be happy to help  by running errands, cooking a meal or driving  you to treatment.
  • There are those who will tell you that your cancer was hard for them to deal with and that is why they couldn’t call you or visit while you were in treatment. You don’t need these people either.
  • A friend or family may expect you to be your old self as soon as treatment is over with no residual fears and no need to speak about your experience ever again unless you have a recurrence. Join a breast cancer support group. Members won’t have you on a time table; they will be able to relate to you and where you are at, because they are there now or have been there not so long ago.

  • One day, active treatment will be over, and your biggest challenge will be to live in today and not allow fear of a breast cancer recurrence to rob you of enjoying your life as a survivor
  • Every day that you wake up and don’t have to go for tests or treatment is a good day!
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Your Lucky You Got It When You Were Older…Really?

All of us who have had breast cancer, or are living with metastatic breast cancer have endured the comments of well-meaning but insensitive people upon hearing of our diagnosis.

My favorite came from a woman at work after hearing about my second primary breast cancer. She said, “Your lucky you got it when you were older, and not when your son was young.” I tired to smile as I responded, “My heart goes out to young women, trying to cope with breast cancer while raising young children, and I am grateful that wasn’t my situation, but there is nothing lucky about getting breast cancer, at any age. There is no good time to get breast cancer.”

I was 55 when diagnosed with my first breast cancer and 66 with my second primary cancer. You don’t find many of us sharing our stories on social media networks, or in the press or television. We are rarely invited to speak at breast cancer functions. Many of us support breast cancer fundraising events and volunteer with breast cancer organizations, but usually behind the scenes.

Let’s take a look at the situations of many women who get breast cancer between the ages of 65 to 85 years of age.

breast cancerWho are they, these almost 96,000 women diagnosed annually with breast cancer? 

They  have the second highest breast cancer rate annually; they are second only, and not by much, to women 55-64 years of age.  They may be second in diagnostic numbers annually, but they are first in numbers of deaths from breast cancer than any other age group.

These women are diagnosed with many of the same breast cancers as their young counterparts, but often times do not receive the same treatment that their breast cancer warrants, and their physical health could tolerate. Assumptions are made about them that sometimes influences the treatment they are offered.

When diagnosed, what are their issues? What supports do they need to get through treatment?

Research on breast cancer and related issues, for this oft times silent population, while limited, documents the following findings:

By 65, some women are experiencing other medical conditions such as diabetes and heart disease that could impact on their treatment options.

Many women in this age group live alone, with their grown children often living a distance from them, making them unable to provide hands on care during breast cancer treatment. Meal prep, house cleaning, and daily emotional support become issues.

Transportation to and from treatment is often an issue often times resulting in missed treatments.

A fixed income and modest savings are often not enough to cover the cost of treatment, even when Medicare and supplemental insurance are both in place. The cost of chemo, radiation, and  hormone therapy medications can wipe out a life time of savings.

Many in this age group come from a generation that did not talk openly about breast cancer, and find it difficult to share in support groups, even though they want and need the comfort and support of peers.

Many are silent because they accept a diagnosis of breast cancer as their lot in life, and consider themselves to be lucky not have gotten the disease earlier in life. This, regrettably, is sometimes said to them by well-meaning friends and family that are trying to give them something to make getting breast cancer more palatable.

It is sometimes assumed that women in their 60’s and 70’s will not want reconstruction, and this option is not always offered to them.

For many, participating in a support group online is not a comfortable option. They prefer one-on-one telephone conversations with fellow survivors.

Frequently, friends and fellow church members, if women belong to a church, are their support systems. However, friends are not always in a position to help out as they have their own medical problems.

What do women in the mostly silent group need:

Breast Cancer Awareness Presentations – Presentations in senior centers and church groups and other places where senior gathers given by breast cancer navigators, who are survivors, seniors themselves, and racially, culturally, and ethnically diverse dispelling the myths about cancer in this age group and linking seniors to low cost screenings to detect breast cancer at an early stage.

A Treatment Plan – A plan based on a woman’s overall health and not her age.

Access to Counseling – Counseling after diagnosis, during treatment, and into survivorship.

Access to Community Resources – Free to low cost community-based, support services that will enable a woman to continue to live independently during treatment.

 

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Keeping Your Primary Care Physician Up To Date on Your Cancer Care

doctor--pills--medical-form--medical_3309381When I was diagnosed with breast cancer the second time, I knew the drill.

I requested, in writing, that my cancer team provide my primary care physician a copy of every test result, information on every procedure, every treatment, every medication and every possible side effect, both short and long-term.

The first time around, I wasn’t as knowledgeable and not every one of my cancer care providers sent my primary care physician courtesy copies of my care plan, medications, etc.

A new survey found that many primary care physicians don’t know the long-term side effects of the chemotherapy treatments that cancer survivors under their care may have been given.

This is cause for concern as once cancer treatments such as chemotherapy or radiation are complete, primary care physicians become a critical part of continuing care for cancer survivors.

Given that chemotherapy can have long term side effects, it is very important that primary care physicians know what drugs their patients received and how this could impact their health in the future. Long-term effects of treatment can hold the answer to a new symptom a patient is experiencing.

While many of us continue to see out oncologists for years after completing active treatment, we still see our primary physicians for routine care.

Patients can’t assume that their cancer teams are keeping their primary care physicians informed through care and at the completion of their care.

Despite the stress of a breast cancer diagnosis and all that means, each of us needs to take responsibility for staying on top of communications between our cancer care team, that  provides time-limited, intensive care, and the primary care physician who is our long-term care provider.

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