Our Voices: A Blog by Links, Callers and Volunteers

A Step In The Right Direction

“I bet they find a cure tomorrow!” my mother said, then shook her head as her eyes filled with tears.

It was midnight on April 2, 2009. I’d raced over to my parents’ home after getting the call I’d dreaded: My wonderful sister Emily, 37, had passed away after an 8-year battle with breast cancer.

I felt like I could collapse in grief. Yet I had to stay strong: Weeks earlier, a routine mammogram had revealed that I, too, had breast cancer. Despite years of helping Emily, there was nothing that could have prepared me for the shock, the questions, the fears. Should I use the same doctors? What treatments would I need? Would I ever feel okay again? Even as I mourned, I wrestled with these terrible uncertainties.

I wish I’d understood how much Sharsheret could have helped me. I could have gotten support to navigate the healthcare system, found counselors to help me deal with my grief and anxiety, and been matched with peers who’d been in my shoes, and had wisdom and encouragement to share.

I muddled through that terrible time, and am thankful to be healthy again. But I can only imagine how much more bearable it would have been with Sharsheret in my corner.

It was my best friend, Dana Adler, who first got involved with Sharsheret. For years now, she’s run marathons on the group’s behalf, many of them in my and Emily’s name. This year, she’s touched me even more deeply by asking me to co-chair Sharsheret’s Annual Benefit Luncheon, where she will be honored for her outstanding efforts.

While Dana has run many miles for Sharsheret, this will be my first step in supporting this terrific group. I’m incredibly excited! There’s lots of planning to do, envelopes to address, and logistics to work out. I’ll be chronicling these preparations in future blog posts for you. I’ve never co-chaired anything before, so if you come to the luncheon (and we really, really hope you will!), I’ll be the one looking clueless. Still, who could say no to a chance like this? This may be a Sharsheret benefit, but it’s really for the benefit of the many people Sharsheret helps every day. They deserve everything we can give.

It’s been nearly seven years since that night in my parents’ living room. And no, there’s still no cure for breast and ovarian cancers. But there’s help, and hope. There’s Sharsheret.

Staying Strong

December 11, 2015 marked 6 years since I was diagnosed with Stage 2b Triple Negative breast cancer.  I am dancing with NED (No Evidence of Disease) and hope that I continue to do so for a very long time!

I had 7 surgeries and months of chemo.  I experienced some unusually severe side effects from treatment that resulted in hospitalizations and long-term implications, but in spite of everything, from the day I was diagnosed, I was positive and strong. My mom always taught us to be strong and I was determined to win this battle. I am so very proud of myself that I was able to do it, staying strong and positive always, and never ever giving up hope. Just like my Mom taught me. No matter what, I was determined to win this battle.  I stayed at Hope Lodge which is a wonderful, wonderful place, and I met so many wonderful new "friends for life".

I first heard about Sharsheret when I left Hope Lodge after finishing all my treatment and surgeries. I received a wonderful survivorship package which was amazing, and which I continue to use.  I only wish I had known about Sharsheret when I was first diagnosed.  I wanted to give back so I asked about becoming a Peer Supporter and became one. I enjoy it so very much, because I know how I felt and being my own caregiver, it was especially difficult, and how important it was and is to have someone to talk to who knew exactly what I was going through.  I am so very proud to be a Peer Supporter for Sharsheret. I want to do whatever I can to help other people so they always know that they are not alone.

Switching Roles

When Rochelle Shoretz, Sharsheret’s Founder, passed away, social media was overflowing with articles about Rochelle, her life, her legacy and her organization, Sharsheret.  I was amazed by all that she did and accomplished, and by the amazing organization she created. Little did I know that Sharsheret would be the clutch I needed in the coming few weeks.  During all of this, one routine test led to more tests, leading to the diagnosis of breast cancer for my mom. My mom has been there for me day and night. Being a full time working mom of three, I had to teach myself as an adult that it was okay to ask your mom for help, and boy have I. But now things would have to change and she would have to take a step back and we would have to focus on her. It was now my job to stand by and be there for my mom in any way she needed or wanted.  No one ever wants to hear the word “cancer”, no matter how young or how old you are. But a big lesson that I have learned is everyone has their own way of facing cancer, and whichever way you choose is the right way.  I am the type of person that needs to read more, talk about things, and hear other people’s stories. So, I immediately reached out to Sharsheret. Sharsheret was there for me sending me educational materials, for support, and as a friend to “talk” to.  I wanted to know everything and be on top of things, and know what can be expected on the cancer road. Nothing about this road has been easy or predictable but I am looking ahead to the light at the end of the tunnel, and I cannot wait to touch that light and sing and dance the happy dance of goodbye to cancer.  Most of all I cannot wait to switch back roles and ask my mom for help.

Ask The Expert

Sheila Solomon, MS, CGC is a Certified Genetic Counselor focusing in clinical cancer genetics for the past 15 years. In addition to her work as Sharsheret’s Program Coordinator, she is employed by GeneDx, Inc., a subsidiary of BioReference Laboratories. Sheila is pleased to answer your questions and concerns about hereditary cancer genetics and your family history of cancer.

Question 1: I'm HER2 positive, BRCA negative; does this affect my family members?

Answer 1: HER2 is a protein found in some breast tumor cells and is not inherited in families. The presence of the HER2 protein can help your healthcare providers provide the most effective breast cancer treatments.

Question 2: When I was diagnosed with breast cancer in 2006, I had the multi-site 3 panel testing which came back negative. My oncologist has asked if I want to do the new testing that tests for 9 different genes linked to breast cancer risk in families. Is it worth doing? Could this new testing have an impact for my children or other breast cancer risks for me?

Answer 2: I’m glad to hear that your oncologist is educated about the new technology using multi-gene panels which allow us to test for multiple genes in a single test. It may be worth meeting with a genetic counselor to review any updates to your family history since 2006, which can clarify which additional testing would be helpful for you.

Question 3: I have Ashkenazi Jewish ancestry on both my mother's side and my father's side of the family. My father's mother died of breast cancer in her mid-60s and there is no ovarian cancer in any woman in the family. My mother’s family was murdered by the Nazis so I do not have health information about them. So I have been wondering, should I get tested for a genetic predisposition for breast and ovarian cancer?

Answer 3: People with Ashkenazi Jewish ancestry have a 1 in 40 chance of carrying a BRCA1 or BRCA2 mutation, which would increase breast cancer and ovarian cancer risks, among other cancers. Thank you for sharing the family history of breast cancer. It is interesting you note that it is on your father’s side of the family. Many people have thought that cancer on the father’s side of the family does not matter, when, in fact, it really does! Men can inherit and pass on BRCA1 and BRCA2 mutation just as equally as women can. So this is still important information. Generally speaking, the younger the diagnosis of breast cancer in the family, the more likely the cancer is hereditary/inherited. With the diagnosis in your grandmother’s mid-60s, it is difficult to say whether her cancer was caused by a BRCA1 or BRCA2 mutation, or if it occurred by chance. It would be worth discussing your personal and family history with a genetic counselor.

Question 4: I am BRCA 2 positive and had a double mastectomy and reconstruction, and the ovaries removed. I have 3 sons, oldest 31 and youngest 26, and I would like them to be tested. Where can they go?

Answer 4: I applaud you and your desire to arm your sons with the gift of medical knowledge! You certainly have taken many steps to reduce your own cancer risks with the genetic information you received and I imagine you would like your sons to know it, too. One of the best ways to begin the conversation is to share your results with them. Talk with them about a meeting called genetic counseling. Genetic counselors are trained healthcare providers who will discuss options with your sons and help to coordinate their testing, should they choose to proceed with the testing. Genetic counselors are located all over the country and world. You can find a local genetic counselor by visiting www.nsgc.org. If you or your sons have specific questions before they meet with the genetic counselor, Sharsheret is glad to be a resource to you and your family. Sharsheret offers Family Genetics Conference Calls, which offers a guided conversation between you and your family members, facilitated by Sharsheret’s genetic counselor to discuss your family’s BRCA genetics risk. You can schedule a call by contacting Sharsheret at 866.474.2774.

Question 5: I’m a 41 year old mom and wife to an amazing husband. I was diagnosed with breast cancer in April. As part of my diagnosis and treatment, I met with a genetic counselor and had genetic testing. I came back with positive for CHEK2. The original treatment plan had been to do 6 weeks of radiation. However, doing some research on my own, I’m pretty nervous about doing radiation, due to this gene. I’m curious if you have an opinion? Luckily, we saw the radiology oncologist this week and she agreed, and she intends to do more research before we proceed, too.

Answer 5: Thank you for sharing your story with me. I am so glad you have spoken with your genetic counselor and are arming yourself with as much knowledge as you can before making decisions. I cannot speak to your specific case and whether or not radiation is the right treatment, as each case is different and is based on number of factors. I recommend you explore this further with your doctor and treatment team. It sounds like your oncologist would be open to this conversation since she intends to do more research, too!

To speak with a member of our support team and get connected with Sharsheret’s genetics program, click here.

The Tears I Shed

When I was diagnosed about two and a half years ago, it came as a total shock. I had exercised avidly, was not overweight, had no history of breast cancer in the family, and didn’t smoke or drink. All the answers to the myriad of questions by health care professionals were all no, no, no and no. I saw my OB/GYN annually and had regular mammograms. So how was it possible for me to discover that I had stage 3 triple negative breast cancer? There was no time for denial or self-pity as it was necessary to make decisions about doctors, surgery, reconstruction, and treatment plans as soon as possible. I was told not to let my illness define me, but that is exactly what happened. I thought it was written all over my face as I walked around doing errands, chatting with neighbors and just going about my business. I am not a person given to tears but suddenly I found myself crying incessantly. When my friend whom I’ve known for over 30 years came to visit, she commented on how she’d never seen me cry. But there I was falling apart in front of her. When I ran into an acquaintance, someone I was not particularly close with, I suddenly found myself crying in her arms, right there in the checkout line of the neighborhood grocery. It was all quite embarrassing. When I first called Sharsheret I had to hang up because I couldn’t speak. They understood and told me to try again anytime. Apparently, tears were not unusual to the wonderful staff there. They were more than happy to put up with my choked up speech, and put me in touch with a peer supporter who also told me not to be embarrassed. I considered myself fortunate that my five daughters were all grown and did not require me to put up a strong front, and it was easy for me to take time off working in my husband’s office. But what did other women do who had to attend to small children, or who had jobs they could not neglect? Those women may not be braver than I am, but it is necessary for them to put on a brave front, and they have my sincerest admiration. Now that I am two years out, I am practically normal, thank G­d, both in my health and control of my emotions. When Rochelle Shoretz, a”h, Sharsheret’s Founder, passed away I once again called Sharsheret in tears. The Sharsheret staff once again told me that it was quite normal for me to react the way I was. Sharsheret has been there for me, never asking for anything in return. It is my pleasure to now contribute to their blog and share my experience. There are no more tears, but if I do have a moment of weakness I will not be embarrassed.

Facing BRCA With Your Young Daughters

When a mother sees an article titled “Are the Kids All Right?” she is likely to read on eagerly to see what sage advice the article could provide to help her fulfill her maternal mission of keeping her child safe.  We have all seen articles like this in the popular media. Usually the topics include bicycle safety, internet safety, or warning your child of “stranger danger”.  As mothers, we feel a certain sense of security when we implement the tips in the article such as buying our child a securely fitting bike helmet, installing filtering software on our family computers, or teaching our child never to talk to strangers. 

The story “Are the Kids All Right?” by CBS news reporter Mary Brophy Marcus addressed a far more complicated topic.  The article describes a study in the issue of the journal Pediatrics that examines the emotional well-being of school-age girls with a family history of breast cancer or known genetic risk. Specifically, the study looked at girls aged 6-13 years with a family history of breast cancer or familial BRCA1/2 mutation (BCFH+ group) as compared to a group of girls without family history or familial BRCA 1/2 mutation (BCFH- group).  Clearly, the “take home” tips from this study are far more complex, intricate, and situation dependent than the tips we glean from the typical parenting article.  At the same time, with the expansion and increased accessibility of genetic testing, having empirically based knowledge of how familial BRCA 1/2 mutations impact the emotional health of young girls is vital.

The main findings of the study are quite intuitive and logical.  First, general emotional well- being did not differ between BCFH+ girls and BCFH- girls.  Second, BCFH+ girls reported more anxiety about their risk for breast cancer than girls without family breast cancer history or known genetic risk. 

It seems to me that the findings of this study speak to the resiliency of this population of young girls.  It is normal and expected that a girl with a family history of breast cancer or known genetic risk will have greater anxiety about her own personal risk.  However, the anxiety about breast cancer remained its own entity. It did not infiltrate into the general emotional well-being of the girls studied.  This may speak to an adaptive capacity of young girls to compartmentalize anxiety in a way that adults only wish they could achieve.

The third main finding of the study allows us to infer how anxiety can be lowered in young girls with family history or known genetic risk. The study found that girls’ anxiety about breast cancer was associated with higher anxiety of their mothers.  What follows from this, is that lowering a mother’s anxiety about breast cancer will help improve a young girl’s ability to cope with family history or genetic risk. 

So, how does a mother lower her anxiety about breast cancer, family history, or genetic risk so that she could take care of her emotional well-being and be a strong role model for her daughter as well?  Strong coping skills are the best arsenal in fighting anxiety.  In most instances, we do not have the power to change the circumstances that we are in.  A woman cannot change the fact that she has a family history of breast cancer.  What every woman can change, however, is how she thinks about the fact that the family history is present. Children often look to their parents for cues on how to think about information that they are unsure how to interpret.  Mothers need not hide their anxiety; children appreciate emotional honesty. A daughter will feel that her anxiety is validated if she observes that her mother shares some of those same emotions.  Seeing her mother exhibit coping mechanisms is even more reassuring and helpful.  Some important ways to model coping include the following:

  • Break challenges into small, manageable pieces:  Show your daughter how to do this by modeling through your own actions.  For example, instead of conveying a message of “I need a complete solution to the issue of genetic risk in my family ASAP”, show your daughter how coming up with a plan for the next step is more realistic, reassuring and helpful.  For example, “I am going to set up an appointment to consult with a known specialist in the area ASAP.”
  • Avoid the urge to catastrophize:  Catastrophizing is defined as having the irrational belief that something is far worse than it actually is.  Catastrophic thinking is a type of cognitive distortion (distorted way of thinking) that can lead to negative emotional states such as anxiety and depression.  An example of catastrophic thinking in the case of known genetic risk for breast cancer would be “I am definitely going to get breast cancer at a young age. When I do, my family will not be able to function and life for everyone will be a nightmare.”  While familial history of breast cancer can certainly make one think this way at times, catching yourself when you have such thoughts will be helpful to you and your daughter.  When you become mindfully aware of your own catastrophic thinking, you can then consider other possible outcomes and more adaptive thoughts.  For example, a less catastrophic thought would be, “If I am diagnosed with breast cancer in the future, it will be a challenge.  But we do have great social support. My family will be okay as I get treated.”

The study in Pediatrics further explains that it is vital to recognize and address a young girl’s distress about breast cancer risk because any persistent distress in adolescence is linked with negative health behaviors such as smoking, alcohol and drug use.  What follows from this concern are some other helpful directions for mothers or health professionals to employ when addressing their child’s distress.

  • Incorporate positive and empowering health messages when discussing breast cancer familial risk:  Explaining to a young girl that she can channel her concern to fuel healthy behaviors accomplishes two important goals.  First, on a psychological level, being able to exert some control over a health issue is reassuring.  Second, from the physiological perspective, reducing negative health behaviors and increasing positive health behaviors is clearly beneficial.  Having ideas about fitness activities and nutrition on hand when you speak to your daughter is helpful.  Brainstorm with your child about ways that fitness and nutrition can be fun for her.
  • Convey the message that knowledge is power: While ignorance can be bliss at times, this is not the case when it comes to health issues.  Knowledge can be both frightening and powerful at the same time.  If we allow power to have more value in the “knowledge = power + fear” equation, we can then emphasize to ourselves and our families that with knowledge we can have the power to make changes, investigate possibilities, and feel hopeful. The net result is that the fear factor in this equation decreases in value.

This important study refers to BCFH+ young girls with the unique term of “pre-vivors.”   “Pre” is a prefix that connotes before. This term suggests to me that no matter what challenges the future holds for these young women, they will be survivors. By incorporating some of the coping and health communication tips mentioned above, we are giving our young girls some of the tools they need to be pro-active survivors in their quest to live physically and emotionally healthy lives.

Parents should consult with a medical and/or mental health professional regarding when and how to speak with their child about this issue. Sharsheret is also available to address these issues with you.

Five Healthy Dishes to Enhance Your Thanksgiving Table

Monita Buchwald is a free-lance culinary professional and the former recipe tester for Martha Stewart Living magazine. She's a breast cancer survivor and a Sharsheret Peer Supporter.

Proper nutrition combined with weight control and exercise is a game plan that everyone can benefit from. This is especially true for breast and ovarian cancer survivors. To lower your risk of a recurrence, America Cancer Society states that healthy eating can play an important role. Experts recommend eating a minimum of five servings of fruits and vegetables a day, choosing whole grains and high-fiber breads and cereals, limiting red meat, and choosing lean proteins and low-fat dairy products.

For the most part, the foods that we eat on Thanksgiving are pretty healthy. It's not like Chanukah, where fried foods are the highlight of the holiday. But even on Thanksgiving, there's more than enough to tempt us, whether it's turkey stuffing or the delicious pies and cakes we have for dessert. One key to a healthier Thanksgiving is moderation -- eat smaller amounts of all the wonderful choices. The other is balance and variety. Add more vegetable dishes and reduce the amount of fats and carbohydrates. Here are five healthy side dishes to enhance your Thanksgiving table.

Mushroom Quinoa Pilaf
(Serves 6)

Ingredients
2 pounds mixed small mushrooms (white, cremini, shitake), sliced 1/2" thick
1-2 onions small diced (1 cup diced)
3-4 tablespoons olive oil
2 tablespoons Balsamic vinegar
1 tablespoon chopped fresh thyme or 1/2 teaspoon dry thyme
2 cups cooked quinoa
Coarse salt and pepper to taste

Directions
1.    Place oil in a large sautè pan over medium high heat. When pan is hot add the mushrooms so they are in one layer. Leave for two-three minutes. Then flip over and cook another three minutes until golden and tender. Remove and set aside and repeat until all the mushrooms are cooked. You may need to add oil between batches.
2.    When the mushrooms are finished cooking, reduce the heat to medium, add another tablespoon of oil, and add in the onions. Sprinkle with 1/2 teaspoon salt. Cook until the onions are tender and beginning to color - about 6-8 minutes.
3.    Add back in the mushrooms, the Balsamic vinegar and thyme. Cook until the vinegar has evaporated, about 2 minutes. Mix in the quinoa and season to taste.

Can be made ahead of time and re-heated before serving.

Cranberry Apple Chutney
(Serves 4-6, makes 2 1/2 cups)

Ingredients
1/2 cup apple cider vinegar
1 small red onion diced (1/2 cup)
1 cup water
1 cup sugar
12-ounces fresh or frozen cranberries
1 large Granny Smith apple peeled and diced into pieces the size of the cranberries
1/4 teaspoon each of cardamom, ginger, and cinnamon
1/2 cup chopped walnuts

Directions
1.    Soak the onion in vinegar for 10 minutes. Drain and set the onions aside.
2.    Combine water and sugar in a medium saucepan. Bring to a boil over medium heat.
Add the cranberries, apples, drained onions, and spices; return to a boil.
3.    Reduce heat and simmer until the cranberries begin to burst and the apples are tender but not mushy. The mixture should remain somewhat chunky.
4.    Pour into a medium glass bowl and cover with plastic wrap directly on the chutney. Let cool to room temperature and then refrigerate, preferably overnight.
5.    To serve, remove from refrigerator and let come back to room temperature. Toss in the walnuts.

Autumn Greens Salad (Adapted from Martha Stewart Living)
(Serves 6)

Ingredients
1/3 cup roasted unsalted sunflower seeds
1 tablespoon whole-grain mustard
3 tablespoons fresh lemon juice (1 large lemon)
3/4 teaspoon coarse salt
1 tablespoon plus 1 teaspoon pure maple syrup
2 tablespoons sunflower oil, or canola oil
1/2 pound Brussels sprouts, very thinly sliced (3 cups)
3 cups shredded Swiss Chard or Kale leaves. From 6-7 large leaves stemmed and thinly sliced

Directions
1.    Stir mustard, lemon juice, salt, and maple syrup together in a small bowl; whisk in oil until emulsified and set aside.
2.    Toss together Brussels sprouts and leaf greens. Stir in sunflower seeds and pour in dressing; toss to coat.
3.    Serve immediately.

To make ahead: Prepare the greens and store in refrigerator covered. Make the dressing and refrigerate. Toss together just before serving.

Roasted Sweet Potato Rounds With Pecans and Parsley
(Serves 6)

Ingredients
1/2 cup pecans
6 sweet potatoes, scrubbed, but not peeled, and cut into 1/2" thick rounds
2 tablespoons olive oil
Coarse salt and freshly ground pepper
1/2 cup coarsely chopped parsley for garnish

Directions
1.    Preheat oven to 350 degrees 
2.    Place the pecans on a rimmed baking sheet and roast in the oven 7-8 minutes until lightly toasted. Remove and set aside. When cool enough to handle, coarsely chop and reserve for serving. Raise the oven temp to 425 degrees
3.    On one-two rimmed baking sheets, toss sweet potatoes with the oil and season with salt and pepper.
4.    Roast, flipping once, until golden brown and tender, 23 to 25 minutes
5.    To serve place on flat serving dish and sprinkle with chopped pecans and parsley

Sweet potatoes can be made in advance. Before ready to serve, place in one layer and warm, uncovered at low temp until heated. Pecans can be made in advance. Store in airtight container. Parsley should be chopped same day as using.

Maple Roasted Root Vegetables
(Serves 6)

Ingredients
3  pounds root vegetables (e.g. carrots, parsnips, rutabaga, potatoes, turnips) peeled and cut into 1”chunks
½ cup maple syrup
2 ½ tablespoons olive oil
1 tablespoons lemon juice
¾ teaspoon coarse salt
1 ounce toasted whole almonds coarsely chopped (1/3 cup)
Pepper for seasoning

Directions
1.    Pre-heat oven to 400.
2.    In a bowl whisk together maple syrup, olive oil, lemon juice and ½ teaspoon salt. Add the vegetables and toss to coat completely.
3.    Pour vegetables and glaze onto rimmed baking sheet. They should be in one layer so use more than one baking sheet, if necessary.
4.    Roast for 30-40 minutes, tossing several times, scraping from the edges where the glaze will get the darkest. Cook until golden brown and tender but not mushy.
5.    Sprinkle with chopped nuts and serve.

If making in advance: Re-heat uncovered at 200 and sprinkle the nuts on just before serving.

A New Chapter

You may be surprised to learn that most women do not know their breast density. I started getting mammograms in my 40's, and I learned that I had dense breast tissue, just like 50% of women who get mammograms. What happened next changed my life and opened a new chapter for me.

In 2012, my physician recommended that I undergo Molecular Breast Imaging (MBI) despite having a normal mammogram. I was reluctant to undergo another test given that I had gone through many in the past without finding any cancer. I decided to follow through, after all my insurance covered this, so why not double check. Following the results of my MBI, my physician clearly saw some abnormalities and recommended I undergo an ultrasound and a biopsy.

That week my family and I went down to Florida, to see my son's marching band at Disneyworld. I got an odd message from my doctor's office asking me to call them when I got back and knew there was no point in waiting. With my husband by my side, I made the call knowing we could face anything together in God's grace.

I was diagnosed with stage 2 breast cancer which led me to have a double mastectomy. Additionally, I opted for reconstruction, followed by chemotherapy and radiation. Together my husband and I battled breast cancer. I've been cancer free for 3 years now! But I cannot stress one point enough: talk to your doctor and ask if you have dense breast tissue.  If it applies, request a secondary screening. Just double check.

Knowing if your tissue is dense and getting a secondary screening is critical for women and could mean catching and treating cancer earlier.  Many thanks to Sharsheret for their interest in sharing my story. I am appreciative to be a part of Sharsheret, an organization which helps young women with their unique concerns, including breast density.

Telling Family and Friends That You Have Cancer

Naomi Baum is a psychologist and trauma expert, and the author of Life Unexpected: A Trauma Psychologist Journeys Through Breast Cancer and Free Yourself From Fear: The Seven Day Plan For Overcoming Your Fear of (Recurrent) Cancer.

One of the issues that anybody with cancer has to confront early in the game is how and with whom to share this news.  For me, this was the first big hurdle in navigating the cancer journey.  Here are a few things to consider while deciding with whom to share, and when and where this sharing will take place.  While there is no one correct response as every person with cancer is unique, several parameters of this decision are worth considering. 

Decide with whom to share your news

The first question to think about, is how open or private you wish to be.  Do you want to keep the diagnosis a secret?  Do you want only family members to know?  Do you want to post it on Facebook and start a blog?  It is your choice.

I can make a good case that life is much easier if you let go of secrecy, and share the news freely with family and friends, but this may not suit you, your lifestyle, or your work circumstance.  For me, sharing the news, and dissolving the secrecy was both liberating, and created around me a tremendous outpouring of support and love.  This aided my healing process immeasurably, and when I made the decision to share the news soon after diagnosis with all of my family members from elderly parents to young grandchildren, I felt a burden I did not even know was there, lifting from my shoulders. 

I shared the news first with my immediate family, my children, parents, siblings, and then with my closest friends and colleagues.  I stressed to all of them that this was not a secret, and I urged my children to talk with each other so that they could be supportive of each other in a way that I, as their sick parent, could not be.  I left the work of spreading the news farther, to the natural grapevine. Unless you swear people to secrecy (and even then, there are no guarantees), you can expect your news to travel.

Do it in person

Do not underestimate the importance of sharing your news in person, particularly with people who are closest to you.  If there is one mistake I made in this process, it was taking the short cut of telling a family member that I had cancer, over the phone.  The reason to tell them in person is that despite all the advances in technology, there is nothing like face-to-face communication.  When you talk to someone face to face, they can see that you are still the same person; you can gauge their reactions, and clear up uncertainties. Often, at the time of diagnosis, you will still look like you always have, and that can be reassuring as well, particularly to children.

Prepare a short script

This is not going to be an easy conversation, particularly the first several times you do it.  You can be sure that the person you are sharing the news with will be more surprised than you are and will find it difficult as well.  Preparing several opening sentences can ease the way for you into this conversation.  Often, the direct approach is best.  I started with something like this:

"I have some news to share with you that isn't so good."

This warning gives your friend or family member a half a second to prepare themselves.  I then continued:

"I was diagnosed with……" 

Additional parts to the conversation might include what the doctors have told you, your next steps, and the kind of help you may need or expect from them. 

Share short and pertinent details

While I am a strong proponent of unlocking the secrecy surrounding cancer, and I shared the headlines freely with family and friends, I found that I did not feel like sharing all of the gory details with everybody.  You did not choose to have cancer, but you can choose whom you share your story and how much you tell.  If people ask questions that you prefer not to answer, do not feel forced to reveal everything.  This is your choice and you are in control of the information.

For many people, short disclosure and a few pertinent details are enough.  It is up to you to set the tone as to how much you want to share.  Practice saying, "I'd prefer not to discuss that."  The person you are talking to will usually take heed, but if they persist  you can explain that while it is important for you to let them know that you have cancer, you prefer to keep the details of the extent of the cancer and the kind of treatment you will be receiving, to yourself.  It is certainly your prerogative.  This is one small way for you to take back some element of control into your life.

Moishe House Seattle Pink Shabbat Dinner

We didn’t know what to expect. We set five tables with pink tablecloths, pink plates, and pink utensils. The food was all cooked and ready, now we were waiting for young Jews in the Seattle area to show up to our home. About 15 minutes before 6:30 pm (our called start time) people started showing up. First a few individuals here and there, next a bunch of couples, and finally the big groups. Before we knew it we had 48 people sitting down for Kiddush (blessing over the wine) and Motzeh (blessing over the bread), with another 15 or so walking through the door throughout the rest of the night. The dinner was a huge success and there was an incredible energy in the room, and because of that energy I was a bit nervous to stop the dinner and speak about Sharsheret. However, as soon as I stood up to speak the room quickly became quiet, and I successfully delivered my few words about Sharsheret and its founder Rochelle Shoretz – I had the pleasure of hearing her speak when she came to visit the University of Maryland a few years back. After I finished, we opened the floor to anyone at the dinner that wanted to say a few words about breast cancer or cancer in general. Two people delivered incredible impromptu speeches, one of whom was a young woman who discussed her friend’s recent battle with cancer. She described the indelible impact Sharsheret had in helping her friend, a recent college graduate, navigate a new, and challenging part of her life.

The dinner was an incredible success and we are very thankful Sharsheret could be a part of it. We are blessed to further Sharsheret’s mission in supporting Jewish women and their families in their fight against breast cancer.

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