My colleague Shawna and I had the good fortune to attend the second Breast Cancer in Young Women Conference (BCY2) put on by the European School of Oncology, which took place Nov 4th and 5th in Dublin, Ireland. We were there to present three posters about some of the innovative work Rethink Breast Cancer does, and to hear about and discuss the latest information on a variety of topics related to young women and breast cancer, including: diagnosis; treatment and therapies;  women at high risk for breast cancer; fertility preservation; metastatic disease and pyscho-social issues. There was a lot to absorb!

Here are some of the highlights from the first day of the conference:

Shawna and I arrived at the conference (O’Reilly Hall, University College Dublin) to set up our three posters:

1. Rethink’s national survey of Canadian young women with breast cancer

2. Our award winning documentary, About Her

3. Our resources to help families with young children cope with breast cancer.

The posters area was located in a glass atrium. Despite Dublin’s reputation for rain, it was mostly sunny during the conference and the streaming sunlight warmed up the atrium to almost summer temperatures, which I enjoyed.

Having set up our posters we went into the conference hall to wait for the conference to begin. The keynote address considered whether breast cancer is a rare disease or a significant public health problem. The answer? It’s both. Only about 6.5% of breast cancer cases are in women under 40, and interestingly the rate of young women (under 40) being diagnosed with breast cancer hasn’t changed since 1975! However, because there has been an increase in the number of young women in the United States there is an increase in the total number of young women who are diagnosed with breast cancer.

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Our National Survey Poster

The disease is often more aggressive in younger women, who have higher rates of triple negative and Her2+ breast cancer. Young women also experience more psycho-social distress as they deal with issues of fertility, impact on sexuality and relationships, and impact on body image along with many other issues specific to their age and life stage. So while young women with breast cancer are a relatively small group – a rare disease – their needs are real and must be addressed – a significant public health problem.  This is exactly what Rethink has been saying for the past 13 years!

Next up was a discussion of the diagnosis of breast cancer in young women. While mammography remains the main tool for diagnosing breast cancer, it has many limitations in diagnosing the disease in young women mainly due to their having denser breast tissue. Even breast lumps that can be felt may not show up in some mammograms! Thus MRIs and ultrasounds are needed to help diagnose breast cancer in younger women, especially to guide the biopsy that is needed to confirm if a suspicious mass is cancerous.  In the future contrast imaging and/or nuclear imaging may play a greater role in helping to make diagnosis more precise, but that remains to be seen.

After diagnosis came presentations related to familial and hereditary breast cancer. One of the questions posed asked when young women diagnosed with breast cancer should be tested to see if they have a BRCA 1 or 2 genetic mutations.  Traditionally, women diagnosed with breast cancer who are candidates for genetic testing (family history, triple negative breast cancer) get the test after surgery and treatment. If they test positive for a BRCA 1 or 2 mutations, they may chose additional surgeries and treatments to address their high risk status.

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Our About Her Poster

Now rapid testing is available which means it is possible to be tested after diagnosis and receive a result before surgery and treatment. The advantage is that if you test positive, you one can make changes to your surgery and treatments plans before they begin. For example, studies have shown the importance of chemotherapy for woman who have the BRCA 1 or 2 mutations, as breast cancer due to the mutation seems to be more sensitive to chemotherapy, especially platinum based chemotherapy. Thus a positive test result could change the treatment received, leading to better outcomes.

The disadvantage of rapid testing is that it delays treatment, which some oncologists disapprove of, especially as breast cancer is more aggressive in younger women. There is also the concern of the added stress caused by finding out you carry the BRCA 1 or 2 mutations so soon after being diagnosed with breast cancer. In various studies of women who had rapid testing versus traditional testing, it was found that most women were very satisfied with rapid testing and while those who tested positive had some additional short term stress, they did not have additional stress over the long term. As well, women who were rapidly tested were not more likely to ask for psychological support.  The studies found the main obstacle to the widespread use of rapid testing is that there are not enough genetic counsellors who are necessary to deliver and explain test results.

Speakers at the conference also noted that there are other factors that lead to young women being at high risk for breast cancer, such as a family history even if you don’t carry the BRCA 1 or 2 mutation, and if you received chest radiation for Hodgkin’s Lymphoma before age 30 (but risk is not increased if you receive treatment after age 30).

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Our Resources for Helping Children Cope poster

One important issue discussed is that young women in the United States who are diagnosed with breast cancer in one breast are opting to have both breasts removed. What is important to note is that most of these women are at a very low risk for a breast cancer recurrence in the healthy breast and removing that breast has no impact on overall survival. However, having a double mastectomy might have an important psycho-social benefit. This issue has received a lot of attention in the North American media.

On the subject of breast cancer surgery, the final speaker we heard on day 1 put forward that whenever possible, mastectomies should be followed by immediate reconstruction as this cuts down on surgeries and recovery times. Also, it is fine to have chemotherapy and radiation treatment after reconstruction as long as implants are used, as opposed to the option of using muscle, fat and skin from your body such as the TRAM flap.  Implants are also the way to go if you plan on having children at some point after treatment as it is not recommended to remove any muscle and fat from your abdomen if you plan on becoming pregnant.

Stay tuned for my report from Day 2 of the conference.