Long Term Ovarian Cancer Study

In case you missed our mention of this study during May's tweet chat we wanted to help spread the word about the Long Term Ovarian Cancer Study. Here are the highlights:

The Study is being done by The Consortium for Long-Term Survival (A Department of Defense-Funded Project , Massachusetts General Hospital , Michael Birrer PI, Lari Wenzel Co-PI). The goal of the study is to identify molecular, cellular and quality of life patterns that are similar in women initially diagnosed with Stage III or IV who achieve long term survival ( 10+ years) and different women who did not survive long term.  The information learned will help to develop new therapies and diagnostic tools for ovarian cancer.

The aims as presented in the project description are:

• Evaluate the genomic features in long-term versus short-term survivors. All cases will also be analyzed for the presence of immune cells and a correlation between these immune cells and genomic features will be studied. This aim will use material collected with the support of other DoD grants to identify biomarkers of ovarian cancers.
• Validate a genomic signature that can predict whether a cancer will re-occur after treatment. This aim leverages an ongoing DoD-funded project that focuses on generating a genomic signature that distinguishes recurrent from non-recurrent early-stage, advanced stage ovarian cancers.
•  Determine the extent to which quality of life measures predict long-term survival of patients with advanced stage ovarian cancer.
• Examine, as an exploratory aim, the potential relationship between quality of life and genomic features predicting disease recurrence.

Survivors who were diagnosed late stage and are close to 10 years from diagnosis may be eligible. Also survivors who recurred during that 10 year period may also be eligible.

I     If you are interested in this project and want to know more about it, feel free to contact the project coordinator, Giulia Fulci, at: Email gfulci@partners.org; Tel (617) 643-5130

       

      Dee 

     #gyncsm Co-moderator

Parenting with Cancer - May Chat

Twenty-nine participants, including survivors, children of women diagnosed with cancer and health care providers, joined us last night for our chat about parenting with cancer.

The topic questions were:

T1: What are some of the biggest worries when caring for children while in treatment?  What worried you most? 

T2: Where can patients and caregivers turn to for help? What resources have been most helpful for you or ur patients? 

T3: When in the process did you tell children/were you told about the DX? How does age impact timing and content? 

 T4: After being told, how often was cancer discussed? and how did you feel about that? 

T5: Looking back, what would you do differently when parenting during that time of your life? or that you now wish ur parents had done? 

 If were not able to join us you can still catch up on wonderful advice and information that was shared by reading the transcript here.

Resources:

Scott Simpson: The Simpson Blog, Broadcaster Scott Simpson leaves Halifax, NS for London, ON to help his wife fight cancer and raise a baby.

http://www.thesimpsonblog.com/

I Wish Cancer Would Get Cancer and Die - Blog

http://iwishcancerwouldgetcanceranddie.wordpress.com/

ASCO's Parenting While Living With Cancer

http://www.cancer.net/coping-and-emotions/communicating-loved-ones/parenting-while-living-cancer

Cancer Support Community's Parenting Through Cancer

http://www.cancersupportcommunity.org/MainMenu/Family-Friends/Parenting-Through-Cancer.html

The Hardest Conversation, article by Lisa Bonchek Adams

http://www.huffingtonpost.com/lisa-b-adams/conversation-parents-kids-cancer_b_2622619.html

Parenting With Cancer

http://parentingwithcancer.com/

Helping Children When a Family Member Has Cancer

http://www.cancer.org/treatment/childrenandcancer/helpingchildrenwhenafamilymemberhascancer/index

MGH Parenting At a Challenging Time's (PACT) A Dozen Lessons Learned

http://www.mghpact.org/for-parents/a-dozen-lessons-learned

MSKCC Parenting with Cancer On-line Support Group

http://www.mskcc.org/events/support-meeting/supporting-children-and-teens-through-parents

NOCC's Communicating with Children

http://www.ovarian.org/caregivers_communicating_with_children.php

ACS's How Should Children Be Told That a Parent Has Cancer?

http://www.cancer.org/treatment/childrenandcancer/helpingchildrenwhenafamilymemberhascancer/dealingwithdiagnosis/dealing-with-diagnosis-how-to-tell-children

Cancer Care's Helping Children Understand Cancer: Talking to Your Kids About Your Diagnosis

http://www.cancercare.org/publications/49-helping_children_understand_cancer_talking_to_your_kids_about_your_diagnosis

The topic for our June 11th chat will be fertility and sexuality. Hope you can join us. 

Dee

Co-moderator