genetic counselor

My Children and Hereditary Breast and Ovarian Cancer

A diagnosis of ovarian cancer earlier this year was a life changing event.  Fear, anxiety, sadness, body image issues, and short and long term effects of chemotherapy, only begin to touch on the myriad of worries which confronted me.  Still, one of the most difficult things to deal with has been the not-so-surprising presence of a genetic predisposition (due to a BRCA2 mutation) to cancer.   The thought that each of my four young adult children had a 50% chance of inheriting this gene was almost more than I could bear.  

How does one deal with the guilt?  How does one speak with her children about such an inheritance?  Does one inform female and male children at the same time and in the same fashion?  Does one give married and still unmarried children the same details?  Does one advise her children to be tested as soon as possible?  Will a positive BRCA2 test with all its implications interfere with a developing or even presently stable relationship?  Can one avoid adding pressure to the lives of adult children when discussing the issues of marrying early and having babies as quickly as possible so that they may take advantage of risk reduction therapy at a young enough age to reduce the chances of ovarian cancer and breast cancer?

There are no standard answers to any of these questions; indeed the approach will surely differ for each family based on the individuals and the family dynamics.   Several interactions have guided my thinking regarding these issues. 

Firstly, I cannot say enough positive things about resources available through Sharsheret.  Sharsheret’s genetic counselor made herself available to me within a few minutes of my initial call and kept closely in touch.  She pointed out several important concepts to me, including the ideas that: 1) I am not the only source of information for my children; 2) Each individual on the receiving end of the information must decide for him or herself how to proceed; 3) All of the information does not have to be discussed in one sitting– indeed the important thing is to keep the lines of communication open; 4) Difficult as this discussion must be, knowledge is empowering as it allows positive actions to be taken.

Secondly, a wise and spiritual friend focused my attention on the positive implications associated with this difficult discussion, namely: truth, trust, potential for decreasing uncertainty, and potential for risk reduction actions.
Finally, one of my children, aware of the pending issue, asked me straight out about the results of my testing, before I was ready to have the big discussion.  When I made the result known to her and spoke with her about some of my concerns, I was amazed at the strength she imparted to me by her personal views. 

I have yet to work through all the details, but I have gained understanding through learning as much as possible about the implications of the BRCA gene mutation, and through speaking with wise and trusted professionals and friends.

Genetic Counseling and Testing: The Insurance Dilemma

‘Will my insurance cover genetic counseling and testing? What do I do if coverage is denied?’
Boy, if I had a penny for every time I heard these questions…

It is well established that 1 in 40 individuals of Ashkenazi Jewish ancestry carries a BRCA mutation, predisposing them to breast cancer and ovarian cancer. When I speak with the women and families of Sharsheret about their family history of cancer, one of their most common concerns is insurance coverage of genetic counseling and testing. Insurance coverage and financial considerations are a valid concern for many women, and simply a reality in today’s day and age.

Most insurance companies set their criteria for coverage based on various established medical recommendations for who should have genetic testing. These criteria are designed to ensure that only those with a “strong” family history or those for whom genetic testing is appropriate are covered. However, it can be frustrating, especially as an Ashkenazi Jewish individual with increased risk, to be denied coverage. Genetic counseling itself is typically covered and billed as a medical office visit, however every center bills for genetic counseling services differently. If you are unsure, I recommend checking with the genetic counselor you meet with and your insurance company to ensure that counseling services are covered. Coverage of genetic testing, however, varies. Every insurance company, including Medicare, has its own criteria and will vary from person to person based on their personal and family cancer history. Additionally, coverage of genetic testing will likely change over time due to new health care laws. Each situation is truly unique, and so it may not always be possible to know before one meets with a genetic counselor if testing will be covered.

However, clinical cancer genetic counselors can assist you with the insurance coverage process. Genetic counselors working in a hospital or medical center setting can assist you with appealing for coverage or working with the laboratory (some have financial assistance programs, although not all.) The genetic testing process can be complex and it is important to meet with a genetic counselor who has the experience and knowledge to handle these concerns.

We welcome anyone with questions about genetic counseling or testing, or their family history, to contact our clinical team at 866.474.2774 for free, individualized support as part of our Genetics for Life program.

Welcoming The New Year

This past year, I was diagnosed with early stage breast cancer. My team of doctors prescribed chemotherapy and a dizzying array of tests and surgeries. As of this writing, my last surgery occurred a little over four months ago. There are moments when I think about what I’ve just been through and am stunned by the intensity of this last year and the fact that I am still here.

Though being sick is terrifying and at many times, infantilizing, cancer is a profound teacher. I’ve learned a great deal this past year, especially, that in addition to having a physical immune system, I also have a spiritual one. My spiritual care evolved in many ways. My brother and cousin flew out here to be with me and one of our rabbinic interns came to my apartment to sound the shofar as I wasn’t able to attend the High Holiday services last year, acts of kindness which I will never, ever forget. Many amazing friends from my synagogue community and from other parts of my life reached out and helped me with meals and with taking me to treatment appointments and holding my hand during chemo. Sharsheret was a huge part of strengthening my spiritual immune system. From pairing me with a peer supporter, connecting me to their staff genetic counselor who patiently explained complicated issues relevant to my being a BRCA carrier, to sending me a pillow so that I could rest more comfortably after surgery, the people at Sharsheret understood what I was going through.

As I continue my journey of transitioning from being a cancer patient to being a cancer survivor, it has become more and more important for me to pay it forward and help the next person who is diagnosed with this disease to navigate the world of coping with a life threatening disease. May we all continue to go from strength to strength.

From the Cab to the Conference: ASCO's Annual Meeting From a Patient's Perspective

By: Rochelle Shoretz, Founder and Executive Director

Each year, thousands of clinicians and researchers convene at the American Society of Clinical Oncology (ASCO) Annual Meeting. Sprinkled among them are patient advocates and patients, like me, who attend sessions so that they can share the latest research with others. This year, I was fortunate to attend the ASCO Annual Meeting in Chicago with a patient advocate scholarship from the Conquer Cancer Foundation of ASCO, and I’m delighted to be able to share research in both breast cancer and ovarian cancer with you.

But first, I need to share a conversation I had with a cab driver on my way to a local outreach event we coordinated for cancer survivors and professionals.

“Let me ask you a question,” the driver began. “There are thousands of researchers and doctors attending this cancer conference, but there is still no cure for cancer. Isn’t this a waste of time and money?”

I’ve heard this question many times before, and I’ve answered it many times before. But this time, I was en route to meet some of our Sharsheret callers living in Chicago, and survivors interested in learning more about our national programs – and the answer seemed more urgent. As I explained to the driver, the research presented at ASCO may not, itself, be the cure for the cancer, but it certainly includes critical pieces to the larger puzzle. And even though that research may not offer the cure today, it is giving most of us living with cancer better quality of life and, some of us, longer lives to live.

I hopped out of the cab and headed into “Cocktails and Conversation”, an opportunity for me to meet with our Sharsheret callers and new women welcomed by our partner organizations in Chicago – Bright Pink, Cancer Legal Resource Center, FORCE, Gilda’s Club Chicago, MyLifeLine.org, and Y-Me. Everyone was buzzing about the conference and the research to be presented that weekend.

For those of us facing breast cancer, the big ASCO news stemmed from a study that showed that post-menopausal women who have a high risk of breast cancer were less likely to develop the disease when they received an aromatase inhibitor called exemestane (Aromasin). That news is important for many of our Sharsheret callers, as 1 in 40 Jews of Ashkenazi descent is at high risk of developing breast cancer (and ovarian cancer) because of a mutation they carry in what is commonly referred to as the BRCA1 or BRCA2 genes. You can read more about the study at http://bit.ly/iLSZuj.

For those of us facing ovarian cancer, scientists at ASCO presented promising research findings from two studies that examined the drug bevacizumab (Avastin) to treat recurrent and newly-diagnosed ovarian cancer. You can read more about those studies at http://bit.ly/iqlc4a.

You can call Sharsheret to speak with a genetic counselor or one of our clinical staff with any questions about these research studies.

As we exhibit and attend breast cancer and ovarian cancer conferences across the country, all of the staff at Sharsheret look forward to sharing our findings with you. Whether our perspectives are gleaned in the cab or the conference hall, we’re proud to be your source of support and information on this journey.