No Boobs About It, Inc., www.noboobsaboutit.org is a not for profit organization sharing information , resources and support on getting through treatment and on with life.

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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Prevention: A loaded Word When Used with Breast Cancer

What’s in a word such as prevention; a lot when used in TV news clips, print media articles and websites. Prevention, loosely defined, says something can be stopped from happening altogether. Really?

You can reduce your risks of getting breast cancer, but you cannot prevent it entirely because there are some risk factors you can do little to nothing about such as growing older  and genetics. Also, breast cancer is not one disease; it is many, with different causative agents besides the known risk factors contributing to getting breast cancer such as: poor diet, lack of exercise, alcohol consumption, etc.

So, as recent articles I’ve read claim, if only women would embrace and live a healthy life style by maintaining a normal weight, exercising, eating a low fat diet, not drinking more than one drink a day, etc  they could prevent their breast cancer. If only it were that simple. Does it mean that if I develop breast cancer I gave it to myself for not practicing prevention activities? Now there’s a guilt trip! Isn’t it bad enough getting breast cancer without being made to feel you gave it to yourself? Now we are crossing over into the blame game that lung cancer patients face when diagnosed, when the first question people ask is, “Did you smoke?” For nonsmokers, always have to defend how they got lung cancer, is an added burden to coping with their disease.

If a prevention lifestyle was all there was to saving yourself from breast cancer, many more of us would be here today then are here. Young children wouldn’t be motherless, and many of us would not be living with metastatic breast cancer or living with the fear of a recurrence.

I would never have started this blog, or worked for the American Cancer Society, as a navigator, because I lived a prevention life style, and had no known genetic mutations. I did have a risk factor, I got my first cancer in the age category that most women are diagnosed…55-64 years. The only way I could have prevented this, to my knowledge, was not to have aged…not a viable alternative.

Until prevention is a reality for all forms of breast cancer, let’s take the word prevention out of articles and off the TV.

Let’s encourage women and men, to follow a life style that can reduce the risk factors for breast cancer. Let’s take away the implied responsibility that if only you took better care of yourself, you would never have gotten breast cancer.

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Thinking Complementary or Alternative Medicine…Think Again

medicineIt’s only natural to want to avoid treatment and medicine that takes your hair, make you nauseous, scar your body, and put weight on you. It’s no wonder that there continues to be growing number of websites that offer alternatives to the standard breast cancer treatments.

Before you choose to follow an alternative medicine regime as your breast cancer treatment, or augment your current treatment with complementary medicine, please consider what National Institutes of Health National Center for Complementary and Alternative Medicine has to say on the subject:

  • Complementary and Alternative Medicine (CAM) describes medical products and practices that are not part of standard care. Standard care is what medical personnel practice.
  • Alternative medicine means treatments other than the standard, accepted treatments and used instead of standard treatments
  • Complementary medicine means treatments that are not standard, and used along with standard ones.

The NIH National Center for Complementary and Alternative Medicine does not recommend using alternative medicines as a treatment for breast cancer and asks that you consider the following before choosing to take complementary treatments in addition standard breast cancer treatments:

  • A natural product does not mean a safe product.
  • Dietary supplements such as herbs and vitamins may affect how well other medicines work in your body.
  • Herbal supplements can act like drugs in your body.
  • Vitamins can also have a strong action in your body.

Make your doctor aware of any dietary supplements you are taking, no matter how safe you think they are. The ads that promote these supplements may say that something has been used for years, but that does not prove that it is safe or effective for you to use. Supplements do not have to be approved by the Federal Government before being sold to the public. You don’t need a prescription for them, so no one is really monitoring the effectiveness or safety of these supplements for you.

While many web sites are good resources for CAM information, some may be unreliable or misleading. Be sure to check out who runs and pays for the site as well as the credentials of the person or persons giving out information on the site.

 A good way you can find articles you can trust on CAM is to ask your librarian to help you look for medical journals, books, and other research done by experts on using complementary medicine during breast cancer treatment. Articles in popular magazines are usually not written by experts.

For more information about Complementary and Alternative Medicine, visit: NIH: National Center for Complementary and Alternative Medicine, www. nccam.nih.gov.

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