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.

Breast Radiation Dos and Don’ts

radiation

A friend is in the early days of getting radiation following a lumpectomy. Since it has been 16 years since my first cancer, a lumpectomy followed by radiation, I needed to review all the dos and don’ts of self-care that I wanted to share with her and with all of you reading this post.

What I found comes from MedlinePlus, a service of the U.S. Library of Medicine, National Institutes of Health.

Breast Radiation Dos and Don’ts

You may notice changes in the way your breast looks or feels (if you are getting radiation after a lumpectomy). These changes include:

  • Soreness or swelling in the area being treated. This should go away 4 - 6 weeks after treatment is over.
  • The skin on your breast may become more sensitive or numb.
  • Skin and breast tissue may be thicker or firmer. The skin may be slightly darker.
  • After therapy, your breast may feel larger or smaller. Many women will not have any change in size.
  • You may notice these changes for up to 12 months after therapy starts.

Skin Care

When you have radiation treatment, a health care provider draws colored markings on your skin. Do not remove them. These show where to aim the radiation. If they come off, do not redraw them. Tell your doctor if they come off. These must stay there until your treatments are done.

Take care of the treatment area:

  • Wash gently with lukewarm water only. Do not scrub. Pat your skin dry.
  • Do NOT use soaps. Do not use lotions, ointments, makeup, perfumed powders, or other perfumed products on this area. Ask your doctor what is okay to use.
  • Keep the area that is being treated out of the direct sun.
  • Do not scratch or rub your skin.

Tell your doctor or nurse if you have any break or opening in your skin. Do not put heating pads or ice bags on the treatment area. Wear loose-fitting clothing.

Do not wear a bra, or wear a loose-fitting bra with no underwire. Ask your doctor about wearing your breast prosthesis, if you have one.

Self-care

You need to eat enough protein and calories to keep your weight up.

Tips to make eating easier:

  • Choose foods that you like.
  • Eat foods with gravy, broths, or sauces to make them easier to chew and swallow.
  • Eat small meals, and eat more often during the day.
  • Cut your food into small pieces.
  • Ask your doctor or dentist if artificial saliva might help you.

Ask your doctor about liquid food supplements. These can help you get enough calories. If pills are hard to swallow, try crushing them and mixing them with some ice cream or another soft food.

Watch out for these signs of edema (swelling) in your arm.

  • You have a feeling of tightness in your arm.
  • Rings on your fingers get tighter.
  • Your arm feels weak.
  • You have pain, aching, or heaviness in your arm.
  • Your arm is red, swollen, or there are signs of infection.

Ask your doctor or nurse about exercises you can do to keep your arm moving freely.

Most people who get radiation treatment begin to feel tired after a few days. If you feel tired:

  • Do not try to do too much in a day. You probably will not be able to do everything you are used to doing.
  • Try to get more sleep at night. Rest during the day when you can.
  • Take a few weeks off work, or work less.

References

Sharma RA, Vallis KA, McKenna WG. Basics of radiation therapy. In: Abeloff MD, Armitage JO, Niederhuber JE, Kastan MB, McKenna WG, eds. Abeloff’s Clinical Oncology. 4th ed. Philadelphia, Pa: Elsevier Churchill Livingstone; 2008:chap 29.

Perry MC. Approach to the patient with cancer. In: Goldman L, Schafer AI, eds. Cecil Medicine. 24th ed.Philadelphia,Pa: Saunders Elsevier; 2011:chap 182.

Davidson N. Breast cancer and benign breast disorders. In: Goldman L, Schafer AI, eds. Cecil Medicine. 24th ed.Philadelphia,Pa: Saunders Elsevier; 2011:chap 204.

Department of Family Medicine, UW Medicine, School of Medicine, University of Washington; and Yi-Bin Chen, MD, Leukemia/Bone Marrow Transplant Program, Massachusetts General Hospital (6/5/2012).

 

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In My Opinion: Fundraising is Best Done By the Organization

fundraisingYesterday I got another call from a woman fundraising for a breast cancer organization. I am averaging three a month.

She immediately launched into a canned script about the hardships of breast cancer and followed up with how I could help with just a small donation of $25. Before responding to her request for a donation I asked the following questions:

Q. How did you get my number? Answer: From your breast cancer website.

A. If you got my number from my  breast cancer website, why did you feel the need to educate me as to the hardships of having breast cancer? Answer: silence

Q. Are you a breast cancer survivor,  or a staff member,or a volunteer with this organization?

A. She identified herself as a professional fundraiser.

I then asked her the question I  ask everyone who calls me doing fundraising:

Q. What percentage of the money you are fundraising  for the organization goes to the organization and what do you or your firm keep from this telephone campaign?

A. The organization will get 15% of the money I raise. But, that is 15% more than they would have if they didn’t use my services.

I identified myself a a 2x survivor and shared that all my breast cancer donations went to the charity I founded, No Boobs About It. She responded by asking if I could just make a $25  donation to the charity she was calling about!

I suggested that if she wanted me to donate, she should tell me more about the organization she was fundraising for, and how 15% of donations raised through the telephone campaign would help women with breast cancer. It was  obvious she was speaking from a script and had limited knowledge of the organization or its mission.

I shared I was uncomfortable with the 85/15% spit in the proceeds of the campaign and would not be donating to this or any other campaign that had such a grossly unequal split in proceeds from the campaign. The call ended on that note.

Fundraising is a hard job. During the 35 years I worked in the nonprofit sector, I helped to raise money for the organizations I worked for as a program director, a development director,  or executive director. Organizations need first to look at their own resources for fundraising…board members, volunteers, survivors and staff. The most successful campaigns I know of utilize people who know the organization, work or volunteer for the organization, or are survivors who have benefited from the services of the organization. They can speak from the heart and make a compelling case to a potential donor They can answer questions.

I am  familiar with the need that some organizations have for outside help with their fundraising. However, most organizations pay fundraising firms a flat fee for their service, they do not give them a percentage of what they raise. Percentage compensation is frowned upon by professional fundraising membership associations.

What most offends me is the bait and switch approach to fundraising. Everyone knows someone who has been touched by breast cancer. You answer a phone, a fundraiser pitches you the need to support this very worthwhile breast cancer organization, and many of us might be willing to agree to the $10, or $15, request. However, the fundraiser doesn’t share that when you donate, she, or her firm will get the lion’s share of your donation.

The next time you get a request for a donation ask the person on the other end of the line  if he or she is a staff member, volunteer, or board member of the charity. If  the person identifies themselves as a fundraiser,  ask how much of  the donation you might make will actually go to the charity. Once you have this information, you can decide whether or not you wish to contribute to the telephone campaign.

Reputable breast cancer organizations need support in meeting the needs of those with the disease. Fundraising campaigns that give the fundraiser significantly more than what they give the charity’s mission do all of us a disservice; they generate bad feelings in donors who were led to believe they would be making a meaningful contribution in support of a breast cancer service.

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Speaking Up, Speaking Out, Until There is a Cure for Breast Cancer

breast cancerBreast cancer is the most common cancer among women, with about 1 million new cases annually worldwide and more than 400,000 deaths a year.

According to the American Cancer Society estimate for 2015, 231,840 women will be diagnosed with breast cancer and approximately 40,290 women are expected to die from breast cancer.

Yet, it wasn’t so long ago that breast cancer was only spoken of in whispers in the U.S. In some places in the world this is still the case.

It is even harder to believe that this was ever the case when every October our world turns pink and everyone from NFL players to chefs participate in raising awareness about breast cancer, while raising funds for research and treatment of this disease that touches so many and those who love them.

I remember my mother telling me about the days before awareness when breast cancer meant a radical mastectomy and women suffering in silence. She spoke in a whisper when she shared what her friend went through

We owe a lot to the courageous women who went public about their disease and the issues surrounding available treatment, the lack of funding for breast cancer research,  and the lack of community-based support services for those affected by breast cancer. In going public, these women forced the medical community to find other, more effective means of screening to detect breast cancer at its earliest possible stage; to develop less debilitating surgeries, and to be able to offer women the option of successful reconstruction following a mastectomy.

One such woman, Rose Rehert Kushner, a writer and breast cancer survivor, wrote…Breast Cancer: A Personal History and an Investigative Report, which was an account of her own illness, and an analysis e of the then current approaches to treating breast cancer. That was 1975.  Parts of her book appeared in newspapers and women’s magazines, and remained in circulation until the early 1990s.

Ms. Kushner advocated for women to be a part of the treatment team, to take charge of their care and not just accept what was said about and done to their bodies.

One of Ms. Kushner’s major contributions was to question the standard medical procedure of performing a one-step biopsy and mastectomy. Women had to give consent to this procedure before anesthesia, knowing that they could wake up to find a confirmed diagnosis of cancer and their breast gone…all at once.

This was my experience with my first breast cancer. I went into the surgery not knowing if I had cancer and woke up to be told I had cancer and was given a lumpectomy. I will never forget how vulnerable I felt. There was no time to prepare emotionally for a breast cancer diagnosis and its surgical treatment; it was a done deal. I had the worst panic attack of my life!

Ms. Kushner found a well-qualified physician who agreed to a two-step process for her that separated biopsy results from surgical treatment. Her subsequent research supported her argument that a two-step process would benefit women psychologically while not harming their prognosis.

Ms. Kushner single-handedly lobbied the cancer establishment to change the customary treatment, which had been based on tradition rather than evidence.  Thanks to her, we now have the two-step biopsy and treatment decision. Thank you Rose!

For my second breast cancer, a bilateral mastectomy, I had a two-step process. A biopsy two weeks before the surgery confirmed the presence of breast cancer. I went into the surgery mentally prepared for the outcome. It made a big difference in my emotional recovery.

So, why speak up, why speak out about your breast cancer? Because disease-related advocacy is most successful when people who have survived the disease educate others about what needs to be done to improve treatment methods and survivor rates.

If we, who have survived breast cancer or are living with metastatic disease, don’t advocate how can we expect anyone else to?

You don’t have to march on Washington, although that is not a bad idea, there are other ways to make your voice heard. You can offer to speak at women’s groups, or volunteer on a breast cancer hot line or participate in a community fundraiser or just be there for a family member, friend or neighbor who has just been diagnosed.

Speaking out about breast cancer gives you the opportunity to use your experience to help others.

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When You Need a Breast Prosthesis

a breast prosthesis for use after a mastectomyWhile many women are opting for reconstruction following a mastectomy or bilateral mastectomy, there are still a substantial number of us who chose and continue to choose not to have reconstruction and want to get a breast prosthesis.

This post is not about reconstruction vs no reconstruction but it is about how and where to shop for a breast prosthesis(es) and how to pay for it.

It may not seem that information about breast prosthesis would need to be posted, but having met with 100′s of women who were stuffing their bras with  tissues or socks or cotton pads, I know it still needs to be said.

Sadly, many of the women I met with were not told, following a mastectomy, that they could get a prescription from their surgeon for a breast prosthesis (es), which most private insurance companies, Medicaid and Medicare would cover with little or no cost to them. No one explained the process to them.

To begin the process:

  • Contact your insurance company and confirm that your policy covers a breast prosthesis(es), Medicaid and Medicare recipients are covered.
  • If your cancer center/hospital does not have a shop where you can get fitted for a breast prosthesis(es), ask you doctor’s nurse for a list of accredited shops.
  • Call to make an appointment for a fitting. Be sure to ask if they accept your insurance plan and if there is any cost to you, such as a co-payment for a breast prosthesis

Getting a breast prosthesis(es) that is a good fit depends on having a certified fitter and being fitted in an accredited shop.

Once at the shop, your fitter will be able to tell you what your insurance covers initially and what you are entitled to annually thereafter. Ask your fitter about what materials the breast prosthesis(es) come in and try all to see what is the most comfortable, stays in place and is a good balance with your own remaining breast.  Silicone breast prostheses are very popular. Following  my surgery, I used fiberfill prostheses as they were light weight and comfortable while my incision area was healing. The hollow breasts are great for a swimsuit and for every day use in the warm months. A full breast prosthesis as opposed to a hollow one, can feel better in the some clothing and balance better with your natural breast.

Breast prosthesis come in a variety of skin colors. The bras that you use with a prosthesis also come in a variety of colors and can be plain or lacy…your choice. If you have had a bi-lateral mastectomy you can also go up or down in cup size from what you were prior to your surgery.

If you had a lumpectomy or a partial mastectomy and need a little something to balance you because your breasts are no longer a matched set, most shops  stock a partial prosthesis or what is referred to as an equalizer. You will need to check with your insurance company to see if they cover this item.

If you do not have insurance or your insurance company doesn’t cover breast prosthesis(es) and you are not eligible for Medicaid or Medicare, there are ways to get what you need at no cost, or little cost to you. Contact a shop or boutique that sells breast prostheses and ask about what they do with discontinued models that they have in stock. Ask your surgeon’s nurse if she knows of organizations that have donated breast prostheses for distribution. Call the American Cancer Society or Cancer Care or breast cancer organizations and ask if they know of any organizations that distribute new or slightly used, clean, breast prostheses.

It is critical to feel good about how you look; a good fitting prosthesis is key to feeling confident about your personal appearance. If you don’t already have a certified fitter in an accredited shop, call your surgeon’s office and speak to a nurse or a medical assistant and find the name and shop of who they recommend. You will be glad you did.

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A New Year, A New Perspective, Pass it Forward

On January 4th, it will be 16 years since my first breast cancer experience.

It amazes me when I look back on that day when I got a phone call telling me a routine mammography showed something suspicious for breast cancer. How little I knew then about the disease. Two breast cancers and years as an American Cancer Society patient navigator have made me realize that most of us don’t know much about breast cancer until it touches us or a loved one. Why would we? Breast cancer is not exactly a popular topic of conversation among female friends or relatives.

There are those who haven’t had the disease that give to fundraisers or participate in events and run along side of breast cancer survivors. We admire them and secretly pray that supporting them somehow buys a pass on never having to personally know the road they traveled to become survivors.

If you are a survivor, you have a special gift to everyone coming behind you…the gift of hope. Nothing is more reassuring than speaking to a healthy looking, vibrant woman or man who has survived breast cancer. Think about volunteering where breast cancer patients are in treatment, or give talks at senior centers; far to many seniors ignore their breast heath despite the fact that they are the second largest age group to be diagnosed. Most church groups, community centers and women’s groups welcome survivors as speakers. Please, pass it forward!

If you want to raise your awareness or that of others about breast cancer, here is a fresh perspective:

  •  There are many types of breast cancer. For a list and description of each one go to www.nationalbreastcancer.org/types-of-breast-cancer
  • One in eight women will be diagnosed with breast cancer in her life time ( Source: American Cancer Society)
  • Breast cancer is the 2nd leading cause of death in U.S. women ( Source: Center for Disease Control and Prevention)
  • 70-80% of women who get breast cancer have no family history of the disease ( Source: American Cancer Society)
  • 98% of women survive more than 5 years if breast cancer is caught early ( Source: Susan B. Komen)

Breast cancer myths also need to be dispelled. Here are a few that are not true:

  • Wearing underwire bras or deodorant causes breast cancer
  • Stress causes breast cancer
  • Breast cancer jumps from one breast to the other
  • Breast cancer is something to be ashamed of
  • You are radioactive if you have radiation treatments
  • Touching yourself in performing a breast exam is wrong
  • Men don’t get breast cancer
  • Breast cancer is a punishment from God

Spread the word when you can. There are still so many women, both young and mature women, who don’t know the facts about breast cancer. If you speak a second language  and you have the chance to educate women who speak only this language, please do what you can to make them aware of breast cancer. The need is great. I met so many of these women, as a navigator, who sought treatment when their breast cancers were advanced. Sadly, for many, their lack of knowledge often times cost them their lives.

On an up note…because of increased awareness:

  • 75% of women in U.S. who are over 40 years old now get mammograms ( Source: Susan B. Komen)
  • 2.9 million women in the U.S. are breast cancer survivors (Source: American Cancer Society)

 

breast

 

 

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