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.

Sexuality After a Diagnosis of Breast Cancer

sexualityI recently read a review of research published in Maturitas an international science journal dedicated to research about midlife health and beyond. The article focused on sexuality after breast cancer.

Summarizing the research findings in a sentence …women get little support to help them maintain intimacy while going through treatment or restoring intimacy after active treatment is over.

Sexuality remains the taboo subject.

The review, which analyzes studies from 1998 to 2010, concluded that the sexual needs of women with breast cancer are rarely addressed in a clinical setting. The reasons given vary; health professionals either don’t know how to, or don’t feel comfortable, initiating discussions, or worse, assume post-menopausal women are no longer concerned about their sexuality as they are no longer sexually active.

As a navigator meeting with women in treatment for breast cancer, I know the fear and anxiety so many women have about their sexuality. Feeling less a woman because of the changes in body image and fatigued from treatment many women felt less than adequate as lovers. Some had experienced the rejection of husbands and partners. Still others could not bring themselves to talk with their husbands and partners about what they were feeling and what they needed in order to be intimate. Most of the women were too uncomfortable to broach the subject with their physicians.

Looking back on my own two experiences with breast cancer, I don’t remember the subject ever being brought up by any member of my treatment team after either cancer. I didn’t bring it up either, not out of embarrassment, but other things like understanding findings, follow-up care, insurance coverage, and employment issues took precedence.

While we breast cancer survivors are living longer than ever before, our quality of life is often compromised by anxiety, depression and sexual dysfunction. Our clinicians encourage us to seek help for anxiety and depression, but sexual dysfunction is often a major issue that never gets addressed. Yet, sexual dysfunction and its impact on quality of life is often at the root of survivor anxiety and depression.

The review in Maturitas stresses that health professionals, who treat women for breast cancer, need more education and training on how to speak to their patients on issues of intimacy and sexuality.

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The Balancing Act

Living life after a diagnosis of breast cancer, for many of us, is a balancing act of living in today, while planning for the future, and trying our best to keeping the “what ifs” at bay.

It has been 16 years since my first breast cancer, but every so often something can take me back to the challenge of getting on with life after active treatment. Not long ago, I met a woman on her last day of active treatment. I was on the elevator in the cancer center, when a woman got on with tears running down her face. I thought for a moment she had received bad news.

 I asked if I could be of help. She looked at me and the words just spilled out ”What do I do now? I’ve been in treatment for breast cancer for over a year: chemo, surgery, more chemo and radiation. Now the physical part is over, but how do I get cancer out of my mind?

For one year, my schedule has revolved around treatment and feeling sick from treatment. How do I get back on track, how do I feel better, less afraid?  When does cancer stop being the first thing I think about when I open my eyes and the last thing I think about before I close my eyes and try to sleep?”

I suggested we get a cup of coffee around the corner, away from the cancer center. When we had ordered, I shared how it was for me. We talked about the following activities that can make the transition from active treatment to getting on with life post treatment a bit easier.

  • If you can afford to take a few days away, preferably with a companion who is upbeat and supportive, just getting away from all things cancer can help to bring closure.
  • Join a support group. There is nothing like the comfort and support that those who have “been there” can give you.
  • Be good to yourself. Take time for socializing, get rest, try something new, do something just for fun.
  • Take an inventory of what you want to change in your life. You have just come through a life-changing experience. Give yourself permission to change whatever you can change. Give yourself permission to do something you always wanted to do…a new job, more education, travel, etc. Start with small changes and build to where you want to be.
  • Train yourself to push the “what ifs” out of your mind…hard but possible to do.
  • Stay away from toxic people, the ones who want to hear every detail of you cancer experience. Seek out the upbeat, positive people who are interesting and fun to be around.
  • If you feel you need counseling, give yourself permission to get help. You have been through enough without suffering through depression and anxiety .

We spoke for while longer and then said our goodbyes, but not before exchanging email addresses.

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Awesome Breastforms

formsI am so pleased to share the following post from Heather Goodes, of Awesome Breastforms, who invites women to order free, hand knitted and crocheted breast forms that are all made by volunteers.

Giving you back your curves!

For those with mastectomies, not having reconstruction…wonderful news: Our very active group of volunteers from around the world has been busy knitting and crocheting breast forms for those having a mastectomy without reconstruction.

These breast forms are lighter and cooler to wear than silicone forms, and are made using soft 100% cotton. They are available in cup sizes from A to DD.

We will take special orders for larger sizes, and from women who have had lumpectomies. You are welcome to choose forms in light and dark skin tones, pastels or go really funky with wild & crazy ones, nipples or no nipples. Because we crochet and knit the orders as they come in, we do our best to give you your color choice. We do send our forms around the world so don’t be afraid to ask if you want your curves back. In the last two months alone we have sent forms to Canada, The United States, South Africa, the Philippines, West Indies, Australia, New Zealand, St. Vincent & Grenadines, the United Kingdom, Scotland and Northern Ireland.

We are stocking one cancer hospital with forms and have started receiving requests from doctors offices to have our samples and ordering information. Medical professionals are excited when they see our forms. Fortunately our volunteer base is also growing steadily. The forms are totally free….you will NOT be asked for a monetary donation.

Please drop by and visit our website and read what others have said about our forms on the Loving My Curves section of the website. http://awesomebreastforms.org. Please check us out. The instructions for ordering are on the website.

 

breast form

 

 

 

 

 

 

 

 

 

Want to learn more about the other reconstruction? Did you know that you can get reconstruction after a lumpectomy? Just go to my column on About.com and read my article on Oncoplastic reconstruction…http://breastcancer.about.com/od/treatments/fl/Oncoplastic-Surgery-Reconstruction-After-a-Lumpectomy.htm

 

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What’s in Your Makeup?

makeupBefore you apply your makeup or use that personal care item, ask yourself what you know about it. What chemicals are in what you are using on your face and how safe are they?

You are doing so much to safeguard your health as a survivor…eating well, getting regular exercise, staying current on appointments, but are you unknowingly adding chemicals to your body through  your makeup and personal care items?

According to the Environmental Work Group (EWG), a nonprofit organization that uses public information to protect public health and the environment, the US government has no authority to require companies to test personal care products for safety before they reach the store shelf. At present, the industry can use just about any ingredient or raw material in soap, shampoo or makeup without government review or approval.

EWG’s research documents that 22 percent of all personal care products may contain the cancer-causing contaminant 1,4-Dioxane, and more than half of all sunscreens contain oxybenzone, a potential hormone disruptor. Other studies raise serious concerns about makeup such as lead in lipsticks and chemicals in fragrance and artificial preservatives in personal care products.

The following groups of chemicals are currently being studied for links to breast cancer:

  • Parabens – chemicals commonly used as preservatives in many cosmetic products, including makeup, moisturizers, hair care products, and gels.
  • Phthalates – used to hold color and reduce brittleness in nail polish and hair spray. They’re also found in many personal care items.

Before you use your current makeup again, or buy a new makeup, visit the Environmental Working Group’s (EWG) Skin Deep site and  check your makeup and personal care items scores.  EWG lists a product’s  hazard score based on the ingredients’ links to cancer, allergies, and other issues.

Source: Environmental Work Group

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Breast Cancer is not a Punishment; it’s a Disease

breastWhile breast cancer with all of its treatment, side effects, and life changes may feel as if you are being punished, you are not. You have a disease.

You did not give yourself breast cancer; you are not guilty of some past transgressions or behaviors that resulted in you getting this disease. You don’t deserve to be punished.

Why do so many of us who get breast cancer feel guilty? Are our feelings of guilt rooted our cultural or religious beliefs?

The years I spent as a navigator, in NYC hospitals, put me in touch with many women whose cultures fostered the belief that cancer, of any kind, was a punishment for previous or current bad behavior. Some cultures that believe in reincarnation, feel getting cancer could be a punishment for something in a previous life.

It is very difficult to break through these cultural beliefs and reassure women in treatment that they are not bad; they have a disease. It is especially hard when women with breast cancer are part of a community that reinforces that belief. Many of the women, could not, would not share their diagnosis with family members and friends for fear of being thought less of, and being excluded from family and community gatherings.

Most of the men I met, in the hospitals, came from countries where breast cancer was considered a woman’s disease. They were ashamed, and shared that if certain family members and friends knew their diagnosis it would be assumed they had done something bad to be punished with a woman’s disease.

How much of your guilt is a result of buying into the idea that you are in control; that you can avoid getting breast cancer if only you follow the guidelines in health care magazines and on websites touting a long list of things you can do to prevent getting breast cancer. So, if you get breast cancer it must mean that you didn’t try hard enough to exercise, eat right, refrain from smoking, drink moderately and maintain a healthy weight. As a result of one or more of these infractions, you got breast cancer. It’s your fault you have breast cancer. What a burden to drag around as you cope with the physical, emotional, and financial realities of the disease!

Perhaps your guilt comes from those family members, friends and acquaintances, who want to know how you got breast cancer; the ones who pointedly ask about your life-style behaviors that may have contributed to your getting breast cancer. Know their only reason in asking such questions is to reassure themselves that they are safe; that you did something to contribute to getting breast cancer; that your cancer is not a random act of fate.

Assigning blame accomplishes nothing. It doesn’t protect those who don’t have the disease from getting breast cancer. Women and men going through breast cancer treatment don’t need to add guilt and the feelings associated with punishment to an already heavy load of emotional baggage.

For more information on women choosing a tattoo over reconstruction, please read my article on About.com…Choosing a Tattoo to Conceal Surgical Scars

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