Friday, April 13, 2018

I Lived It

The other day in the car I heard the song "I Lived It" by Blake Shelton.

...Oh, you think I'm talking crazy
In a different language you might not understand
Oh, that's alright
That's just the kind of life that made me who I am...

He is talking about his time growing up but it spoke to me too- it related to how I felt- and sometimes still feel - when I talk about my experience with cancer, let alone ovarian cancer, to those who have never had it. I know my life would’ve been different if I hadn’t had ovarian cancer, but I did, and this is the life I have now. I’ve written a book , lent my voice as a patient advocate, participated in academic papers as an author, attended and spoken at conferences- these are things I would never have had an opportunity to do. Now, I am invited to join a new project for women diagnosed with ovarian cancer, that will include building a community of women diagnosed with the disease to support and learn from each other.

The Ovarian Cancer Registry was started by Larry Maxwell, INOVA Gynecology Department as part of the DOD Gynecology Cancer Center of Excellence. Women with a history of ovarian, peritoneal, or tubal cancer are invited to join and contribute data through the Registry which is a type of clinical trial. Women in the study will also be surveyed for ongoing quality of life issues and have the opportunity to learn about new studies and new initiatives. With our combined voice, I am hopeful we will be invited to participate in formative work- to guide future research questions, clinical trials, and the education that we as survivors need and want. . To learn more about the goals of the registry visit https://ocr.endgyncancer.com/ to register or read the consent form please visit https://ocr.endgyncancer.com/join/. I am pleased to join this initiative as a blogger along with Annie Ellis, Teri Woodhull, Susan Leighton, and Kristina Abalos.

The Registry, is separate from, but supports Globe-athon, the global effort to end gynecologic cancers. Globe-athon hopes "to increase awareness of women’s cancer, address disparities, and transcend barriers (i.e. ethnic, racial political, geographic, financial, cultural and religious) through educational outreach, global community engagement, and by advancing research." Part of building this community is having ovarian cancer survivors share their experience and thoughts. Our blogs will be housed here; check this page to read the blogs that are posted to date.

In the future women will also have the opportunity to have more private conversations through a partnership between the Registry, Globe-athon and Smart Patients, an online community for patients and families affected by a variety of illnesses. I'll update you all when that partnership begins.

We have so much to offer each other and I look forward to being a part of this new world wide community of women.


Dee
Every Day is a Blessing!



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Wednesday, March 28, 2018

#SGOmtg Twitter Highlights - Research Highlights Monday, March 26, 2018

Monday March 26th was another day of important presentations at the SGO Annual meeting. Some results may change treatment protocols going forward.

Here are the tweets I found of most importance.

 Cervical Cancer - Minimally invasive surgery *this one may change how early cervical cancer is treated

Ovarian Cancer Debulking Surgery


Ovarian Cancer - Niraparib and Pembrolizumab
Ovarian Cancer - Olaparib and Durvalumab



 Ovarian Cancer- Metastasis and DDR2 experssion

Palliative care
Survivorship / BMI and Risk

Lay navigation


Granulosa Cell tumors


Thanks Dr Dood, Erica Bednar, Annie Ellis, Ali Saiz, Alpa Nick, Rick Boulay, Erin Stevens and Kathleen Schmeler for sharing on Twitter during the meeting.

Dee
Every Day is a Blessing!

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Tuesday, March 27, 2018

#SGOmtg Twitter Highlights - Research Highlights Sunday March 25, 2018

Sunday was another busy day of information sharing at the SGO Annual Meeting in New Orleans.
Here are the topics that caught my eye while following the #SGOmtg hashtag.

Ovarian Cancer Maintenance Rucaparib - NOVA Study
Ovarian Cancer - Niraparib and Cost effectiveness
Ovarian Cancer - Parp inhibitor and BRCA status



Endometrial Cancer GOG 86 P Predictive biomarkers of endometrial cancer

Endometrial Cancer PORTEC3

Endometrial - GOG 249

Cervical Cancer - chemo /radiation


Thank you to Rick Boulay,MD, Jolyn Taylor, Don S Dizon, Douglas Levine MD,  Shannon Westin and Deanna Teoh, M.D. for tweeting using the #SGOmtg hashtag so those of us following from a distance can learn.


Dee
Every Day is a Blessing!

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Monday, March 26, 2018

#SGOmtg Twitter Highlights - Research Highlights Saturday March 24, 2018

Here are a few highlights from the  SGO meeting from Saturday March 24, 2018. Tweets of physicians and advocates I follow concentrated on:
LACK OF GYN CANCER CLINICAL TRIALS



OPIOID USE


IMPROVED OS OF MINORITY PATIENTS IN CLINICAL TRIALS



EVEROLIMUS/LETROZOLE IN ENDOMETRIAL CANCER


GOG244 LYMPHEDEMA STUDY


COST AND PARP MAINTENANCE


CHECK POINT INHIBITOR SIDE EFFECTS



SENTINEL LYMPH NODE IDENTIFICATION

 It was exciting for me to see an advocate - Meg Gaines - present at the meeting. We are making progress.
Thank you SGO, Amir Jazaeri, Rick Boulay MD, Kian Behbakht, Nicole D. Fleming MD, Shannon Westin, Erin Stevens, Joshua Garrett Cohen,  and Annie Ellis for tweeting from the meeting.


Dee
Every Day is a Blessing!
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Sunday, March 25, 2018

#SGOmtg Twitter Highlights - OCHeroes, Friday March 23, 2018

I was not able to attend the SGO Annual Meeting in New Orleans this year but I am following the meeting via Twitter.

Friday night was a special night because at a gala the first ever  OCHeroes award for those who increase awareness and advance research and education of ovarian cancer was presented by Cure Media Group and  sponsor Tesaro. This year the awards went to Laurel Rice, M.D, Carolyn Berson, RN, MSN, Susan Leighton, Sue Friedman, DVM. 

The Cure article on the event may be found here.

Here are some Tweets from the event.








So good to see this amazing group of women honored for their dedication to research and finding a cure.

Check back over the next few days for more Twitter Highlights from the meetings sessions on March 24th and 25th.  

Dee
Every Day is a Blessing! 
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Monday, March 12, 2018

New Research : Biopsychosocial Distress Associated with Breast and Gynecologic Cancer

Last week I read this tweet.
After tweeting questions about the study to  Dr Bergerot, she kindly shared with me the complete article.

Here are some details from the study.

This study was a retrospective quantitative study part of a larger study which took place at City of Hope. It used the City of Hope electronic screening device called You , Your Family and City of Hope are a Team that measures distress.The screening tool involved over 30 core questions and also asked participants their preferred method of assistance/support ( None, Written Info, Talk, Talk + Written Info).

There were 2111 breast cancer patients and 641 gynecologic cancer patients who took part in the study . Most gyn patients were late stage and older (M 57.17 yrs) than the breast cancer patients. There was no significant difference in their body mass.

The study found that gyn cancer patients reported higher problem-related distress compared to breast cancer patients in the following areas:
  • fatigue
  • pain
  • walking or climbing stairs
  • bowel movement/ constipation
  • questions and fear of end of life
  • feeling angry and irritable 
  • needing practical help at home

Gyn cancer patients requested to Talk with a team member about the following issues at a higher level than breast cancer patients:
  • understanding treatment options
  • solving problems
  • fear of medical procedures

Gyn patients also requested Written Information and Talk for at a higher level than breast cancer patients:
  • side effects of treatments
  • finances
  • pain
  • fatigue
  • feeling anxious or fearful


The researchers found that having a gyn cancer and being diagnosed at a younger age were significant predictors of total distress.

In conclusion researchers found that gyn cancer patients had higher problem-related distress. They found no significant difference between cervical and ovarian cancers on the sum of  biopsychosocial problems, which shows they are both at high risk for distress.

It was also found that gyn cancer patients requested to talk to a member of their team more often than breast cancer patients. The authors stated that preexisting support for breast cancer patients may be the reason for lower requests from breast cancer patients.

While the study hypothesized that gyn cancer patients would represent a high-risk group for high levels of distress they did not expect that gyn cancer patients would required higher levels of assistance.  The article stated, "the computerized touch screen system may have facilitated the expression of needs and concerns despite cancer stigma: In research involving sensitive or embarrassing information, electronic questionnaires have been more accepted by patients and more sensi- tive than paper questionnaires." Age , race, education and annual income could also contribute to problem-related distress.

Source:
Bergerot CD, Clark KL, Obenchain R, Philip EJ, Loscalzo M. Breast and gynecological cancer patients' risk factors associated with biopsychosocial problem‐related distress. Psycho‐Oncology. 2018;27:1013–1020. https://doi.org/10.1002/pon.4607
 
 
In my 13 years as an ovarian cancer survivor I have seen some improvement in support of gyn cancer patients. There are more in-person gynecologic cancer support and networking groups, gynecologic cancer awareness organizations providing platforms online for peer support and more attention being given to gyn cancers symptoms during Gyn Cancer Awareness Month ( September).

But this study verifies that we need to understand that the needs of gyn cancer patients may be different and require different support than other women's cancers. 

Dee
Every Day is a Blessing! 





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Wednesday, March 7, 2018

Ovarian Cancer Screening in Asymptomatic Women - USPSTF

In 2012, I wrote a blog post titled I Agree with the USPSTF  regarding the latest recommendation on screening asymptomatic women for ovarian cancer.

On February 13, 2018 the USPSTK released an updated recommendation.

The USPSTF recommends against screening for ovarian cancer in asymptomatic women.
This recommendation applies to asymptomatic women who are not known to have a high-risk hereditary cancer syndrome.
Grade: D 
(The USPSTF recommends against the service. There is moderate to high certainty the service has no net benefits or the harms outweigh the benefits.)

You can read the full recommendation here.

In the February 25th issue of the ASCO Post. Michael J. Barry, MD said "“Evidence shows that current screening methods do not prevent women from dying of ovarian cancer and that screening can lead to unnecessary surgery in women without cancer.”

Remember if you have a history of breast or ovarian cancer in your family these recommendations do NOT apply to you.

It is sad that in the past six years there is still no effective screening test for ovarian cancer that is both specific and sensitive to the disease. We still have a lot of work to do to help find a test that will find ovarian cancer at an early stage.

Dee
Every Day is a Blessing!
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