Science , Communities and Life with Cancer- The 3rd Annual AstraZeneca Bloggers Summit

On June 24th,  I attended the 3rd Annual AstraZeneca Bloggers Summit.  The day gave me an opportunity to meet other bloggers and to learn about social media and topics of interest to cancer patients and survivors.

What I learned at the Summit can be separated into three areas-science, communities and life with cancer.

The Science:

Photo provided by AstraZeneca

Deborah Torgersen-Paul, PhD (Executive Medical Science Liaison, AstraZeneca) presented the Evolution of Science and Understanding Cancer. Dr Torgersen-Paul began her presentation with a discussion of how the Human Genome Project changed our understanding of cancer.  She then went on to explained the role of oncogenes, tumor suppressor genes, cell death from chemotherapy and apoptosis( a cells normal death). She described driver mutations and how small molecules (such as Parp inhibitors) are used. She also discussed immunotherapy (which I heard a lot about while at the ASCO meeting this year). Some cancers don't stimulate the immune system as well as others so if we can find ways to boost our body's immune system the better we can destroy the cancer cells.  She also described work going on in immuno-oncology in which chemotherapy and immunotherapy are given together.  Lastly, she spoke of the research into circulating tumor DNA (ctDNA) , also  called a liquid biopsy,  and its role in screening for different cancers.

 After the presentation we took a tour of the Phase 1 laboratories at MedImmune where the Summit was held.

Oncology Bloggers at the Summit had the opportunity to see the MedImmune Phase1 labs.

Our Communities:

Photo provided by AstraZeneca

Ciaran Blumenthal (@momfluential) , a social media and marketing expert provided insight into "The Story of Us: Best Practices for Growing Communities Online". We ( the oncology bloggers)  were all at the summit because we share our story with a community of followers. Ciaran began by defining a community and the differences between online and "in real life" communities. She then talked about how characters can develop the community - content creators, experts, influencers and supersharers. She stressed the importance of the Hashtag in social media. From my own experience, the #gyncsm hashtag has been important in growing and sharing information among members of the gynecologic cancer community especially between our monthly chats. She then went on to discuss online platforms - blogs, Instagram, Twitter, YouTube, Pinterest and the strategies that can be used to grow a community. She stressed how content is key!

Life with Cancer:

Photo provided by AstraZeneca

Sage Bolte PhD, director of Life With Cancer,  presented the afternoon sessions geared toward different aspects of living with cancer.

Did you know that patients should be asked their distress level at each doctor visit? Studies have shown that 50% of all cancer patients experience a high level of distress ( emotional , mental, social, spiritual) during treatment. Lung, pancreatic and brain cancer patients report the highest levels. One in four cancer patients will experience depression. It has also been found that patients with lower quality of life experience more depression. When a person has situational depression it has been found that as the stressors patients experience subside so does the depression . When clinical depression occurs medication and therapy( cognitive or behavioral) may be prescribed.

Then Dr. Bolte talked about anxiety and fear.  I could definitely relate. To this day when I have to have a CA-125 test or CT scan my anxiety level shoots through the roof.  And it was good to see some of the things I use to calm down were listed in Dr Bolte's list of things to do to deal with anxiety.

• Stillness- prayer, mediation, allow to grieve, acknowledge ( I have a favorite mantra.)
• Motion- exercise, journaling, etc ( I love to paint when I am  anxious.)
• Ignore- this is ok for short periods of time ( When I learned my friend had passed last month I did choose to ignore it for a few hours. )

For the last session of the day, Dr. Bolte talked about Sexuality and Intimacy. Health care providers are as reluctant as patients to discuss the impact surgery and treatment have on the sexual life of their patients. A number of sexual challenges occur when a person has cancer:

• Cancer itself
• Psychological Distress
• Cancer Therapy
• Side Effects
• Alterations in relationships

One of the physical problems associated with the instant menopause many women enter into after gynecologic cancer surgery or due to cancer treatment is vaginal stenosis- a narrowing of the vaginal canal. There are a number of techniques ( dialators, lubricants ) that can be used when the condition develops.

As I was listening to Dr Bolte I noticed that the key word she kept using was communication. Cancer patients / survivors should communicate with their partner, spouse, family, friends and physician so everyone is aware of what you need and don't need. I can agree with that 100%.

One of the best parts of the Summit was being able to spend time with the other bloggers. Since I follow most of the bloggers online it was wonderful meeting them in person. Below is a list of my fellow blogger's names as well as links to their blogs and twitter handles. 

Katie Brown - Lung cancer
Website/blog: www.lungevity.org & www.iamkatiebrown.com 
Twitter @LUNGevity & @brownbeansprout
 
Dian “CJ” Corneliussen-James - metastatic breast cancer
Blog http://www.metavivor.org/blog/
Twitter @METAvivor

Katherine O'Brien - metastatic breast cancer
Website https://ihatebreastcancer.wordpress.com/
Twitter @ihatebreastcanc

Jennifer Campisano- metastatic breast cancer
Blog http://www.boobyandthebeast.com/
Twitter @Jcampisano

Alana Ray Osborne  - general cancer
Blog: http://www.powerfulpatients.org/blog/
Twitter @alanaray40

Thank you AstraZeneca and MedImmune for such an informative day!

Dee
Every Day is a Blessing!

Metastasis

I 've been thinking a lot about cancer metastasis and women with metastatic breast and recurrent ovarian cancer.

First, the definition of metastasis is

me·tas·ta·sis

   [muh-tas-tuh-sis] 

noun, plural me·tas·ta·ses  [-seez] 

1.

Pathology .

a.

the transference of disease-producing organisms or of

malignant or cancerous cells to other parts of the body 

by way of the blood or lymphatic vessels or membranous surfaces.

b.

the condition produced by this.

Source: dictionary.com

October is Breast Cancer Awareness month and October 13th is Metastatic Breast Cancer Awareness Day. Some women on twitter, facebook and in blogs  (http://womenwcancer.blogspot.com/, http://chemo-brain.blogspot.com/, http://www.tamiboehmer.com/) are upset with all those pink ribbons, pink products and walks and celebrations of survivors when there are women living with metastatic disease. Women with metastatic breast cancer seem to feel forgotten.

If caught early (Stage 0-II) the five year survival rate  for breast cancer is  74-93%. ( http://www.cancer.org/Cancer/BreastCancer/DetailedGuide/breast-cancer-survival-by-stage ) But some women are initially diagnosed with Stage IV disease where the disease has spread through the lymph system to other organs of the body and their five year survival rate is 15%. For other women their cancer returns a few years after diagnosis  and cancer cells are found in their lungs, liver,  bone or brain.  These women are living with the disease and will be in treatment for life. They are metastatic breast cancer survivors.

The number of women diagnosed with ovarian cancer each year is much less than the number  diagnosed with breast cancer  (  226,000 versus 25,000). Big difference.  The survival rates for stage III and stage IV ovarian cancer are 35% and 18% respectively. Not such a big difference with our late stage breast cancer sisters.  There is no screening test for ovarian cancer so  62% of all women diagnosed with the disease are diagnosed late stage.

Here is the thing, statistics show that 70-80% of women diagnosed with late stage ovarian cancer ( disease beyond the ovary)  will recur. Some women will have treatment ( surgery , chemotherapy, radiation) and go into  remission. Others never go into remission. These women  live with the disease as a chronic illness, they will be in treatment for life. I know a number of women who are living with the disease today trying new chemotherapies and entering clinical trials. And for the rest of us who have recurred once or twice well we worry when our next recurrence will occur. Not so different from our metastatic breast cancer sisters.

I urge breast and ovarian cancer researchers to talk more . Yes I know there are those who research  BRCA 1 & 2 mutations and recent studies with basal cell breast cancer (http://www.genengnews.com/gen-news-highlights/aggressive-breast-cancer-may-respond-to-ovarian-cancer-treatment/81247370/) . But there still may be a clue - a pathway, a gene , a protein as to why our cancer cells function as they do.

And to all those metastatic breast cancer survivors, your recurrent OC sisters are with you on the journey.

Dee
Every Day is a Blessing!




Sources :
http://mbcn.org/
http://www.webmd.com/breast-cancer/features/metastatic-breast-cancer-chronic-condition
http://ovariancancer.jhmi.edu/recurrentqa.cfm
http://www.ovariancancer.org/about-ovarian-cancer/statistics/

Stress and Bone Metastasis

In the past I have written about stress and ovarian cancer. Once in "Stress and Ovarian Cancer - NCI Bulletin" and again in "Integrate Cancer into the Tapestry of Who You Are". 

Yesterday @RoswellPark tweeted about stress and metastatic breast cancer. Because of the genetic connection between ovarian and breast cancer I followed the link to this press release from Vanderbilt University Medical Center titled "Stress fuels breast cancer metastasis to bone"  . 

I don't usually write blog posts from press releases so I looked further and found the team of researchers also published in the PLOS/Biology and online peer reviewed journal in an article titled "Stimulation of Host Bone Marrow Stromal Cells by Sympathetic Nerves Promotes Breast Cancer Bone Metastasis in Mice." Feel free to read the entire article ( complete with graphs, photos and citations) online. 

In a nutshell, Vanderbilt Center for Bone Biology researchers using a mouse model for bone metastasis found through experimentation that making the sympathetic nervous system ( In humans stress and depression activate the system.) active in mice promoted breast cancer cell colonization in the bone marrow of the mice .  Their results showed that the stress activated RANKL ( a protein found in the bone that stimulates the break down of bone ) and helped to promote the cancer cell migration. They also showed that chronic stress in vivo can be blocked by introducing the beta-blocker Propranolol. Their conclusion was that the use of Beta blockers and drugs that interfere with the RANKL signaling like Denosumab, a drug approved to build bone mass could increase patient survival if used as adjuvant therapy. 

I am sure that human trials will be forthcoming since beta -blockers are generally safe and used by many for blood pressure control and migraines prevention. 

It is research like this that is so exciting to read about. 

Dee

Every Day is a Blessing. 

A Message for Metastatic Breast Cancer Patients

The other day a friend posted a link on Facebook to an article on the Huffington Post. The article was Rethinking Societal Attitudes about People Who Get Cancer by Dr. Joseph Nowinski, a clinical psycologist. I thought the title sounded interesting so I read the article. Then I read it a few more times.

The article begins with a reference to 1978 when Susan Sontag wrote about myths surrounding cancer. Myths such as, we get cancer because we are angry and that diseases can be cured through will power. Then the article goes on to say that even today for some cancer patients, metastatic breast cancer in particular, there is still a social stigma. A stigma even though "cancer is not caused or cured by our personality." It went on to mention a patient with metastatic breast cancer who could not run a support group because it would cause fear in other patients, and who felt isolated because she had not "beaten" breast cancer because maybe she wasn't happy enough. The last paragraph states "perhaps the warrior metaphors we use to describe those whose cancer has been arrested are better replaced with images of possibility and tenacity."

I invite those metastic breast cancer patients to search for an ovarian cancer survivor to talk to. We may fight the battle with different chemotherapies and surgeries but we also know how to live with cancer. Live with not knowing if we will recur. Live with not knowing when we will recur. Live with recurring. Live with remissions - short and long. Live with not knowing if and when we will recur again. Live in constant chemotherapy. That is the life of an ovarian cancer survivor.

My gynecological cancer support group has newly diagnosed women , women currently with no evidence of disease , women in treatment for a recurrence and women in remission after a recurrence. Over the past 4 years we have shared our successes and our setbacks. We don't know why each of us was diagnosed with ovarian cancer but we offer each other support and hope. As one survivor's bracelet says - "Fight like a Girl ".

Metastatic breast cancer survivors you are not alone! There are ovarian cancer survivors with tenacity too!

Dee

Every Day is a Blessing!