Oct 14,2015 Open Mic Chat

This Open Mic chat focused on topics of interest to our participants. It was great to see our regulars and some new faces. It was a lively hour with 35 participants and 406 tweets in the hour. You may find the transcript here and additional analytics here.

The initial question was about returning to work.

I'm going back to work for the first time in 6 weeks on Monday. Worried about energy/endurance. Advice? #gyncsm

— Elizabeth Anderson (@MathTeacherEA) October 15, 2015

Advice included recruiting students to help, drink lots of water, take breaks, eat high energy snacks such as nuts, raisins and to take a nap when she got home.

Then a good source on immuno-oncology was shared along with some comments on Lynch Syndrome.

Want "basics on up" re immuno-oncology, new drugs Opdivo and Keytruda, trials? Try new the new IKCC website http://t.co/Wkqt2YIXrr #gyncsm

— Robin Martinez (@RobinSmrtPtient) October 15, 2015

@RobinSmrtPtient Very true - tumors w MSI (microsatellite instability) respond to PD-1 inhibitors. MSI is common in #Lynch Syndrome #gyncsm

— Shannon Westin (@ShannonWestin) October 15, 2015

Lynch syndrome information and resources via @shewithlynch http://t.co/DyrCslkfGf She also blogs for @cure_magazine #gyncsm

— Christina Lizaso (@btrfly12) October 15, 2015

The discussion then turned to IP chemotherapy for ovarian cancer. Studies show IP chemotherapy provides an improved overall survival compared to IV chemotherapy.

The Underutilization of Intraperitoneal Chemotherapy for #OvarianCancer : Why? #gyncsm @Medscape http://t.co/nct6PzLDBg

— Lisa M Guzzardi, RN (@LguzzardiM) October 15, 2015

@LguzzardiM @btrfly12 Centers need to get the training to feel comfortable/competent/safe giving the IP treatment #gyncsm

— Shannon Westin (@ShannonWestin) October 15, 2015

The recent report on the safety of Hormone Replacement Therapy for epithelial ovarian cancer survivors was shared and discussed.

Adjuvant Hormonal Therapy Is Safe in Epithelial #OvarianCancer #gyncsm Via @CancerTherAdvsr http://t.co/VtoZMbp4Zk

— Lisa M Guzzardi, RN (@LguzzardiM) October 15, 2015

Next the topic of annual pelvic exams and a possible U.S. Preventive Services Task Force recommendation was brought up.

The debate on whether we need annual pelvic exams is in the news again and gov report looming http://t.co/IHLM2Xg2l9 - thoughts? #gyncsm

— Christina Lizaso (@btrfly12) October 15, 2015

ACP says no need for annual if no symptoms, history. ACOG came back with caveats, feels up to pt and dr to decide. #gyncsm

— Christina Lizaso (@btrfly12) October 15, 2015

We also discussed screening, family history, gyn awareness month activities, a timeline chart of long-term side effects post-chemo & radiation, risk of ovarian cancer in young women, surgical menopause and which supplements are recommended after BSO(bilateral salpingo-oophorectomy). 

 A link to a Brief survey for Cancer Survivors: How do you prefer to receive test results?buff.ly/1VTe1tm was also shared.

Remember you can continue our conversation on Smart Patients (https://www.smartpatients.com/gyncsm)

We look forward to seeing you again next month on November 11, 2015 at 9pmE/8pmC/6pmP as we talk about Exercise and Nutrition. We are lining up some guests to share their expertise so the hour should be filled with helpful information. See you then!

Dee
Co-Moderator

Resources

IKCC website 10forio.com Understanding Immuno-oncology for Kidney Cancer

The Underutilization of Intraperitoneal Chemotherapy for #OvarianCancer medscape.com/viewarticle/85…

Adjuvant Hormonal Therapy Is Safe in Epithelial Ovarian Cancer cancertherapyadvisor.com/gynecologic-ca…

Do Women Need an Annual Pelvic Exam pbs.org/newshour/rundo…

 Book: 100 Questions & Answers About Ovarian Cancer by @drdonsdizon @womenofteal  jblearning.com/catalog/978128…

@NCICancerStats #OvarianCancer fact sheet: go.usa.gov/yUpP

What’s an Ashkenazi woman to do? Jewish Telegraphic Agency jta.org/2015/10/14/lif…

She Has Lynch Syndrome

March is Colorectal Cancer Awareness month. Lynch syndrome also called hereditary nonpolyposis colorectal cancer (HNPCC) is associated with colorectal cancer but many are unaware that the syndrome is also associated with endometrial cancer and ovarian cancer. Women with Lynch syndrome have a 21-71% risk of endometrial cancer and a 3-14 % risk of ovarian cancer. Additional information regarding surveillance, risk reducing surgery, etc. may be found on the Up To Date website at: http://www.uptodate.com/contents/endometrial-and-ovarian-cancer-screening-and-prevention-in-women-with-lynch-syndrome-hereditary-nonpolyposis-colorectal-cancer.

Georgia Hurst, who was diagnosed with Lynch syndrome in 2011, is an advocate, daughter and sister of colon cancer survivors. She choose to have risk reducing surgery and following that experience started writing the I Have Lynch Syndrome website. The website's mission is "to address the possible plethora of emotional implications of a Lynch diagnosis and to encourage those that may at be at high risk to get genetically tested." We are happy to share a blog post written by Georgia for her blog in June 2013.

Christina and I would like to thank Georgia for her support of the #gyncsm community.

How to be happy after a Lynch diagnosis

I got slapped with my Lynch diagnosis on May 17, 2011. I had my radical hysterectomy on June 10, 2011 and spent the last couple years trying to figure out how to reconcile living with this emotional aspects of this genetic monster. I had to undergo lots of therapy, meds, acupuncture, meditation, books, spending time with friends, exercising, and participating in life affirming activities in order to start feeling better.

Lynch is not something you can only fret about during your annual screenings; it’s something that you must be mindful of every day. Most things I do are for my betterment, to improve or sustain my good health, and if it’s not good for me physically or emotionally, then it doesn’t get to be in my life.
Here is my list of things to do to live a happy life following a Lynch diagnosis.

1. Decide what prophylactic measures you will take/or not and then deal with that. I felt the need to take control immediately following my diagnosis and scheduled my hysterectomy. Learn all you can about Lynch; become your own health advocate and get screened religiously.

2.  Think about most things that you put into your mouth. Will it nourish you or eventually end up destroying you? Do you need to alter your diet and include more fruits and veggies and less animal products? Your diet does play a role in cancer’s development. Drink more green smoothies and be sure to incorporate things such as kale, spinach, green apples, green tea, and chia seeds into your diet. Let thy food be thy medicine!

3. Workout at least five days a week. I’ve been running for years but now I need it more than ever; first for the endorphins, second because I want to be as trim and fit as possible. Lift weights –  for me, physical strength holds implications for my mental strength. You must make exercise a priority in your life. Period.

4. Spend time with people who teach you, nourish you, love you, and are willing to listen to you. Get rid of the toxic people in your life – you have enough crap to deal with – eliminate them and make room for more positive people in your life.

5. Spend time cultivating your spirituality. I meditate – a lot, usually for an hour. Pray, meditate, whatever it is that you do and do it more frequently. Talk to yourself and tell yourself that you’re healthy, strong, and that you will not allow for cancer to manifest itself into your body. Breathe deeply. Repeat.

6. Read books about death and happiness. It’s amazing what profound words some books have written in them. I’m partial to Buddhist philosophy; it’s helped me immensely with dealing with my death anxiety. Also, reading about other people’s life issues provides you with perspective on your own life and makes you realize how fortunate you are in many ways.

7. Spend time in nature. Go for a walk, go to the beach, garden, spend more time outside. It works wonders for the soul.

8. Do at least one thing that makes you feel good every day. Period.

9. Cater to your inner child. Do things you’ve always wanted to do and keep putting off. I recently built an eight foot teepee in my basement – I’ve always wanted one since I was a kid. Are you going to wait until you’re sick and old to do them? Do them now.

10. Express gratitude, every day. Count the things that you’re grateful for and remember there is someone always worse off than you.

11. Limit your time on FB Lynch and cancer platforms. They can be highly depressing and cause your optimism regarding your own health to wane. You know you have Lynch and can take preventative measures to fight it; many of those who are suffering from cancer did not know they had Lynch until it was too late. Keep that in mind when reading their stories. You’re one of the lucky ones!

12. Make your home your sanctuary; I have peaceful looking Buddhas about the house, upbeat music playing, candles burning, and flowers in my home. It’s hard to be depressed in a lovely, calm environment.

13. Have something to take care of every day. Adopt a dog or cat from the shelter. Get a fish. Get some plants. Having living things that need to be cared for by you gives you more purpose.

14.  Leave your mark and/or create something. Do something that makes you feel as though you’ve made a difference. You don’t need to win the Noble Peace Prize, but do something you can be proud of; for me it’s been this blog and my advocacy work.

15. Connect with others who have Lynch and are not sick. Just remember, you’re not alone. If you can’t find anyone else, zap me an email, I’d be happy to talk to you.

16. Stop worrying about others in your family and whether or not they’ll be screened. You cannot control anyone but yourself. All you can do is set an example for them.

17. Be happy; if you’re doing every thing you can, exhausting all of your options, getting screened, and taking care of yourself, you should gain some solace from all of this.


And she’s off.
Namaste.
Georgia

Dee
#gyncsm Co-moderator

News from the Annual SGO Meeting- April Chat

The Society of Gynecologic Oncologists met in Florida at the end of March for their annual meeting. During tonight's chat we asked the doctors and researchers these questions:

T1a: What SGO presentation did you find of most interest?

T1b: What SGO presentation do you think will interest patients most? What were some of the studies of note?

T2: In what areas is new research lacking? 

T3: Is there anything patients/survivors/advocates need to take immediate note of?

T4: Were there other session topics that resonated for you?


You can find the transcript of the night's talk here and analytics here.

Links for studies mentioned during the chat:

High volume cancer centers have better outcomes for gyn cancer pts; >1 year overall survival (OS) https://t.co/7PHsHbt5Rq

Risk of high risk uterine cancer in BRCA patients -  http://t.co/qveUn8w0J3

Smarca4 in hypercalcemic type small cell ovary cancer  http://www.nature.com/ng/journal/vaop/ncurrent/full/ng.2922.html

BRCA1 link to higher risk of aggressive uterine cancer https://t.co/DBDt9mOnTp

"Cancer doesn’t end women’s sex life” http://t.co/ST2qiLKIOs

Obese women who had bariatric surgery 3 ½ times less likely to get uterine cancer than without surgery https://t.co/RWfcJzZQvW

JAMA paper on electric morcellation risks http://t.co/slkaN2O4WT

SGO had a position statement in Dec 2013 on morcellation too https://t.co/SQmL5ZatDL

SGO recommends genetic testing for all women dx w #ovca. even if no family history - a new position paper http://t.co/GjqF8dewR6

Meeting Abstracts:
SGO website  https://t.co/2CRcIIJhqT

Videos:

2014 SGO Mtg surgery & translational science overview http://t.co/3Z0ab6WHlK  2014 SGO Mtg #ovarian cancer overview http://t.co/EWp08G36yn 2014 SGO Mtg #cervical cancer overview http://t.co/00m3qDM9vo 2014 SGO Mtg #uterine cancer overview with @dsmgyo http://t.co/BG4SKpcmRU

World Ovarian Cancer Day is May 8th http://t.co/jKTa0Efvdk #WOCD #WorldOvarianCancerDay

Feel free to e-mail us (gyncsm@gmail.com)  or tweet us (@gyncsm)  if you have any questions. 

See you Wednesday May 14, 2014 9pm EST Topic: Parenting after a gyn cancer diagnosis

Dee
Co-moderator