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.

The Best Holiday Gift …A Breast Cancer Time Out

As I remember from my navigating days, the breast clinics and chemo rooms got rather empty from before the holidays until a week or two into the new year.

It was, as if, most patients said, “I need a time out from breast cancer. I need a time to get away from talking about and thinking about breast cancer. I need to have a time when no one is examining me; a time to be free of being poked and stuck. I need a time  not be nauseous and exhausted. I need just a little while to do things I enjoy, no matter how small, with out feeling sick or angry or sad.”

Many people  don’t know what to say or do for a friend or loved one going through breast cancer treatment. If you are the patient, make it easier on them by telling them how they can help you have a time out from all things breast cancer, even if it is just for a few hours.

holidaysThe best gift to receive, at any time, is the gift of sharing time with loved ones when going through breast cancer treatment.

As a patient, let friends a family know you would enjoy the normalizing gift of a breast cancer time out by doing something you enjoy that will not be taxing when you have limited energy. Going to a movie, taking a ride around town, visiting with friends, or just playing a board game together might just be what is needed to lift your spirits.

If you celebrate Christmas, help with decorating, making cookies, or wrapping presents are some great ways to get things done that need doing, as well as being a great time out. So ask for help!

If you are the friend or family member, ask about doing some things that would be an escape from thinking about breast cancer. Sometimes, just having companionship, doing the ordinary things one did before beginning breast cancer treatment can be a welcome treat, and a much appreciated “time out.”

If you are a patient, don’t reserve “time outs” for the holiday season; take them whenever you can during breast cancer treatment. They will make a difference in how you feel, and how you weather the treatment experience.

If you are family or friends, know that a call, suggesting a time out together, will make all the difference to someone going through treatment. Companionship when you are feeling physically and emotionally low is a much needed and appreciated gift.

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Wreath of Memories

As I take out the first braided cloth wreath to begin my holiday decorating, I remember the December that I hosted a series of wreath-making sessions for my fellow patient navigators.

Looking at the wreath took me back to the years I was a patient navigator in New York City’s public hospitals, and the times I spent with my fellow navigators. As navigators, we usually worked alone, visiting patients in chemo, in radiation waiting rooms and in the various medical clinics. It was a real treat when we had the opportunity to meet as a group to share our experiences and give each other support.

Throughout the year, we met for lunch in the various hospital cafeterias at least once a month. We kept in weekly contact by email and remembered birthdays.

Holidays brought that special opportunity to celebrate another year together, not only as navigators, but as cancer survivors. Out of the 7 staff and 75 volunteers that navigated weekly, 6 staff and 74 volunteers had survived cancer, primarily breast cancer.

That December of 2008, when we got together, each making a wreath, we celebrated what was to be our last year of all of us getting together. Fortunately, we didn’t know it then.

I had left the program a few months earlier, but wanted to continue the friendships developed through the program. We were all determined to make the gatherings special as we knew some of us had experienced recurrences and were no longer able to navigate.

I wish I could say that we have all been able to get together each year, since then, but, for some life events got in the way. Social media makes it easy to stay in touch when getting together is not possible. Skype sessions are almost the real thing, but I miss the hugs we always exchanged.

This holiday season, I want to send a special thanks to my fellow navigators who made being a part of the American Cancer Society Patient Navigator Program such a meaningful experience.

The memories braided into each wreath I made that day will be with me always.

wreath  wreath

 

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Who is Getting Reconstruction and When?

Choosing breast reconstruction  is a choice that not every woman is prepared to make so soon after a diagnosis of breast cancer.

doctor talking about breast reconstructionWomen opting to have reconstruction need to have a detailed discussion with their surgeons with regard to the risks and benefits of reconstruction. They need to understand that if they are considering reconstruction to maintain their body image that the reconstructed breast will not look exactly like their natural breast.

Women need to know that:

  • A reconstructed breast will not have the same sensation and feel as the breast it replaces.
  • Visible incision lines will always be present on the breast, whether from reconstruction or mastectomy.
  • Certain surgical techniques will leave incision lines at the donor site, commonly located in less exposed areas of the body such as the back, abdomen or buttocks.
  • If only one breast is affected, it alone may be reconstructed. In addition, a breast lift, breast reduction or breast augmentation may be recommended for the opposite breast to improve symmetry of the size and position of both breasts.
  • The process of reconstruction may take more than one surgery.

Once a woman  has this information, then and only then can she make a decision whether or not to have reconstruction, and to decide which type of surgery she would prefer to have. She needs to decide whether to have immediate reconstruction or delay reconstruction.

Far too many women don’t even get to make a choice. They don’t know they have a choice. Unfortunately, many women are not told about their option for reconstruction at the time they meet with their surgeon.

In states where it is the law to inform women of their right to reconstructive surgery, this is usually not the case. When I chose to have a bilateral mastectomy, it seemed that every member of my care team asked  if I wanted to speak with a plastic surgeon about my reconstruction options.

There is conflicting information coming out from recent studies about who is getting reconstruction. One study found that the decision to get immediate breast reconstruction rather than delayed reconstruction or avoiding reconstruction altogether has been related to patient demographics. Immediate reconstruction was more likely to happen in the younger (less than 50 years) white patient who was seeking medical care in an urban versus a rural hospital. These patients were also more likely to be educated, employed, and married. Recently there has been an increase in breast reconstruction among older patients (greater than 65 years), probably related to greater awareness and changes in the attitude of providers.

Patient insurance is another factor in determining if a woman can get immediate reconstruction or delayed reconstruction. Private health care plans provide coverage for reconstruction. Medicare, a federally funded government health program has standard coverage for reconstruction. Medicaid however, is state funded and reconstruction coverage can vary from state to state.

Another issue women face who are covered under Medicaid or Medicare is finding a plastic surgeon who accepts these insurance plans for reconstruction procedures.

Given the trauma of a breast cancer diagnosis and all the treatment decisions that it brings with it, most women need the support of a friend who can help with researching reconstruction options and what they entail.

Source: Breast reconstruction: current and future options, Breast Cancer: Targets and Therapy, Dovepress

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Reminders of My First Breast Cancer

breastEvery so often I am taken back to my first breast cancer diagnosis, when I knew little about the disease and its treatments. Recently I accompanied a friend when she visited the breast surgeon for the first time.

When her visit was finished, we went for something to eat, and I reviewed the doctor’s answers to my friend’s questions and  went over her treatment plan.

With each thing we discussed my memories came flooding back, and I was able to offer support and reassurance for the days that lay ahead for her.

I remember that the toughest part of my first breast cancer, in 1999, was not the surgery, or the radiation, or even the five years on Tamoxifen. It was coping with the fears it set off.   I lived alone; could I take care of myself during treatment?  I needed to support myself; could I work during treatment? After treatment, the what ifs set in..what if I get a recurrence or cancer in the other breast and need a mastectomy? What if I want to change jobs, will I be able to get insurance or will this be considered a pre-existing condition? I was really tired of  breast cancer being the first thing I thought of when I woke and the last thing I thought of before falling asleep at night Continue Reading »

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A Thanksgiving Wish

My wish, if you are in treatment, or just newly diagnosed is that you can give yourself a time out from all things breast cancer this Thanksgiving weekend.

 

If you are newly finished treatment, I wish you the peace and relief of having treatment behind you an a new beginning ahead of you.

 

If you have many years as a survivor, I wish you the joy of knowing what’s important and what isn’t important.

 

I wish us all the gift of seeing a cure for the many types of breast cancer so all those we love will be safe from this disease.

 

Happy Thanksgiving!

 

wish

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