I have been busy spending time with family the past few weeks. The blog posts should be more regular going forward. Thanks for understanding.
ASCO ( American Society of Clinical Oncology) produces a number of important reports each year of interest to survivors, advocates and caregivers.
The State of Cancer Care in America 2016 reports on the trends in oncology care in the US. The report found that there is a shortage of oncologists in rural areas, there remains inconsistent insurance coverage for cancer patients and the cost of cancer care continues to rise.
Below is an infographic which summarizes the information and recommendations made in the report. You may read the full report here.
The second report of importance to survivors is Clinical Cancer Advances 2016. For the past 10 years, ASCO has been producing this annual report. Earlier this year ASCO asked
advocates and survivors to share how advances in research impacted
their lives. You may read the report here. I was honored to have my story chosen to appear in this year's report . You may find it on Page 41 ( 43
in a pdf reader).
Dee
Every Day is a Blessing!
Teal is the awareness color of ovarian cancer. Women of Teal is a play on the words "Man of Steel" used to describe Superman. I have found my fellow ovarian cancer survivors to be the strongest, most helpful women in the world. They are truly Women of Teal!
Thursday, March 17, 2016
Monday, February 29, 2016
In the News: Talc
Last week we learned that a Missouri jury awarded the family Jacqueline Fox $10 million of actual damages and $62 million of punitive damages. The information spread rapidly among Ovarian Cancer survivors. Many posted how they used the product for years. Some shared the information they found presented at the trial such as this letter which discusses industrial exposure.
After reading so many responses to posts about the lawsuit award in social media and having questions myself (Shouldn't the number of women diagnosed with ovarian cancer be higher if Talc caused the disease? How does the talc affect the ovary to cause cancer? How does the talc affect the ovary when it inside the body not a surface organ?)
I delved further.
Study 1: Perineal Talc Use and Ovarian Cancer :A Critical Review
One of the thorough reviews of talc and ovarian cancer I ran across was this article published in 2008 by Muscat - Perineal Talc Use and Ovarian Cancer :A Critical Review. (Perineal = cosmetic talc)
In the early 1970's the lung cancer asbestos link was being studied. One asbestos study using guinea pigs (1969) showed asbestos in the animal's ovaries. While limited data in another study showed an increase in mortality rates due to Ovarian cancer for women who worked in the asbestos industry in another study ( 1982) showed. So talc became suspect as a cause of ovarian cancer. Please not that a study done in 2008 showed no increase risk for those working in the asbestos industry.
Is Talc the same as Asbestos? "Asbestos is morphologically (form and structure) distinct from talc and belongs to different silicate mineral groups and subgroups." In other words, Talc which is a member of a different silica group does not behave the same ("a mineral’s fibrous pattern of growth") as asbestos.Thinking along these lines carbon is the same in coal and a diamond it is all how the atoms are arranged.
How does Talc cause cancer?" "Asbestos fibers in the lung initiate an inflammatory and scarring process, and it has been proposed that ground talc, as a foreign body, might initiate an inflammatory response." We are not sure of the bodies response to talc although the formation of ANTI-MUC1 antibodies when the body has been exposed to talc has been proposed in the past.
How does Talc enter the ovaries?"Perhaps the most fundamental unanswered question on perineal dusting is whether powder applied to skin surfaces surrounding the external genitalia actually enter the adult female genital tract. It is uncertain whether dusting contaminates the vagina or cervix and if so under what hygienic conditions. The issue of particle retrograde migration from the cervix to the ovaries assumes that talc particles migrate upwards against both gravity and the downward flow of vaginal mucous and menstrual fluids." ..."In early studies, it was assumed that the vagina was the route of exposure, although as noted previously occupational studies indicated that inhaled particles could migrate from the lungs to the ovaries."
A study of silica in ovaries by Heller showed "Some samples that had no measurable talc counts were obtained from women who reported regular talc dusting, whereas other samples with high concentrations were obtained from women who reported no genital talc use."
The conclusion section of the Muscat study, states, "lifetime whole body exposure experiments in female laboratory rats found that ovarian tissue was not contaminated with talc and that ovarian tumor incidence was not increased (Boorman and Seely, 1995). "... "In addition, inhaled talc in mining and milling operations is not associated with increased pulmonary tumors. IARC classified inhaled talc that does not contain asbestos fibers as a group 3 carcinogen (e.g. inadequate evidence in humans), and the likelihood that talc could selectively induce ovarian cancer and not lung cancer, and at exposure concentrations presumably orders of magnitude lower than that in occupational settings needs to be weighed."
Study 2: Perineal Powder Use and Ovarian Cancer
After reading so many responses to posts about the lawsuit award in social media and having questions myself (Shouldn't the number of women diagnosed with ovarian cancer be higher if Talc caused the disease? How does the talc affect the ovary to cause cancer? How does the talc affect the ovary when it inside the body not a surface organ?)
I delved further.
Study 1: Perineal Talc Use and Ovarian Cancer :A Critical Review
One of the thorough reviews of talc and ovarian cancer I ran across was this article published in 2008 by Muscat - Perineal Talc Use and Ovarian Cancer :A Critical Review. (Perineal = cosmetic talc)
In the early 1970's the lung cancer asbestos link was being studied. One asbestos study using guinea pigs (1969) showed asbestos in the animal's ovaries. While limited data in another study showed an increase in mortality rates due to Ovarian cancer for women who worked in the asbestos industry in another study ( 1982) showed. So talc became suspect as a cause of ovarian cancer. Please not that a study done in 2008 showed no increase risk for those working in the asbestos industry.
Is Talc the same as Asbestos? "Asbestos is morphologically (form and structure) distinct from talc and belongs to different silicate mineral groups and subgroups." In other words, Talc which is a member of a different silica group does not behave the same ("a mineral’s fibrous pattern of growth") as asbestos.Thinking along these lines carbon is the same in coal and a diamond it is all how the atoms are arranged.
How does Talc cause cancer?" "Asbestos fibers in the lung initiate an inflammatory and scarring process, and it has been proposed that ground talc, as a foreign body, might initiate an inflammatory response." We are not sure of the bodies response to talc although the formation of ANTI-MUC1 antibodies when the body has been exposed to talc has been proposed in the past.
How does Talc enter the ovaries?"Perhaps the most fundamental unanswered question on perineal dusting is whether powder applied to skin surfaces surrounding the external genitalia actually enter the adult female genital tract. It is uncertain whether dusting contaminates the vagina or cervix and if so under what hygienic conditions. The issue of particle retrograde migration from the cervix to the ovaries assumes that talc particles migrate upwards against both gravity and the downward flow of vaginal mucous and menstrual fluids." ..."In early studies, it was assumed that the vagina was the route of exposure, although as noted previously occupational studies indicated that inhaled particles could migrate from the lungs to the ovaries."
A study of silica in ovaries by Heller showed "Some samples that had no measurable talc counts were obtained from women who reported regular talc dusting, whereas other samples with high concentrations were obtained from women who reported no genital talc use."
The conclusion section of the Muscat study, states, "lifetime whole body exposure experiments in female laboratory rats found that ovarian tissue was not contaminated with talc and that ovarian tumor incidence was not increased (Boorman and Seely, 1995). "... "In addition, inhaled talc in mining and milling operations is not associated with increased pulmonary tumors. IARC classified inhaled talc that does not contain asbestos fibers as a group 3 carcinogen (e.g. inadequate evidence in humans), and the likelihood that talc could selectively induce ovarian cancer and not lung cancer, and at exposure concentrations presumably orders of magnitude lower than that in occupational settings needs to be weighed."
Study 2: Perineal Powder Use and Ovarian Cancer
The second study I read was Perineal Powder Use and Ovarian Cancer by Houghton and others published in 2014. This study looked retrospectively at data from the Women’s Health Initiative Observational Study cohort. The women self-reported talc use (genitals, sanitary napkins, or diaphragms) and duration of use. There were over 61,000 women in the study.
The authors concluded "Ever use of perineal powder was not associated with risk of ovarian cancer compared with never use. Individually, ever use of powder on the genitals, sanitary napkins or diaphragms was not associated with risk of ovarian cancer compared with never use, nor were there associations with increasing durations of use."
So where do we go from here? Is there an increase risk of ovarian cancer?
Audra Moran, President and CEO of Ovarian Cancer Research Fund Alliance said "The fact remains that the science is inconclusive about increased risk of ovarian cancer to women using talcum powder."
Dee
Every Day is a Blessing!
Labels:
asbestos,
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J&J,
Ovarian Cancer,
Perineal Talc,
talc
Wednesday, February 24, 2016
Spring Ovarian Cancer Awareness Walks
It's never to early to plan how you can help raise awareness and funds for ovarian cancer research. Here is information on two ovarian cancer awareness and fundraising events taking place in my area this spring.
1st Annual 5K Run/Walk to Break the Silence
NOCC NY + NJ
April 2, 2016
Liberty State Park
Click here to register. Can't make it donations are accepted.
Sandy Rollman Ovarian Cancer Foundation
12th Annual Sandy Sprint 5K/10K and Canine Sprint
April 23, 2016
Philadephia Museum of Art
Click here to register. Can't make it register as a Sleepwalker!
I appreciate the work our local awareness organizations do to raise awareness and especially the funds they raise to support ovarian cancer research.
Dee
Every Day is a Blessing!
1st Annual 5K Run/Walk to Break the Silence
NOCC NY + NJ
April 2, 2016
Liberty State Park
Click here to register. Can't make it donations are accepted.
Sandy Rollman Ovarian Cancer Foundation
12th Annual Sandy Sprint 5K/10K and Canine Sprint
April 23, 2016
Philadephia Museum of Art
Click here to register. Can't make it register as a Sleepwalker!
Dee
Every Day is a Blessing!
Thursday, February 11, 2016
An Amazing Advocate and Friend
I hated opening my e-mail on Monday afternoon. It's title was simply, "Carole". I knew before I opened it what it would say. Carole had been in hospice the past few weeks. She passed away on Sunday, February 7th, her 60th birthday. She had thrived 9 years after her initial ovarian cancer diagnosis.
Carole was more than just another women with ovarian cancer, she was my friend. We first met at the gyn cancer networking group at the Cancer Support Community of Central NJ. We talked family, BRCA mutations, gynecologic oncologists, awareness and the latest research. We both served on the Board of the Kaleidoscope of Hope Foundation (KOH). Carole was serving in the role of President when she passed away.
Our paths intersected once more when she and I volunteered with the Cancer Hope Network. She loved sharing her story and supporting newly diagnosed women especially those with the BRCA mutations.
She was a wife, mother, teacher and had dedicated herself to raising awareness of ovarian cancer among women in NJ as well as raising funds for research. She loved to travel. Carole had traveled the world -Europe, South America, Asia. Her home living room was decorated with beautiful Asian works of art.
She thrived as she lived with cancer and was an inspiration to so many. "She never let illness slow her down and ended her battle, as always, on her own terms. " You may read more about her here and on the KOH website here.
Those who advocated along side her will be honored to continue her work raising awareness and supporting research to find a cure. Carole made an impact on my life and I will miss her. Donations in her memory may be made to KOH on their website.
Dee
Every Day is a Blessing! I was blessed to have Carole in my life.
Carole was more than just another women with ovarian cancer, she was my friend. We first met at the gyn cancer networking group at the Cancer Support Community of Central NJ. We talked family, BRCA mutations, gynecologic oncologists, awareness and the latest research. We both served on the Board of the Kaleidoscope of Hope Foundation (KOH). Carole was serving in the role of President when she passed away.
Our paths intersected once more when she and I volunteered with the Cancer Hope Network. She loved sharing her story and supporting newly diagnosed women especially those with the BRCA mutations.
She was a wife, mother, teacher and had dedicated herself to raising awareness of ovarian cancer among women in NJ as well as raising funds for research. She loved to travel. Carole had traveled the world -Europe, South America, Asia. Her home living room was decorated with beautiful Asian works of art.
She thrived as she lived with cancer and was an inspiration to so many. "She never let illness slow her down and ended her battle, as always, on her own terms. " You may read more about her here and on the KOH website here.
Those who advocated along side her will be honored to continue her work raising awareness and supporting research to find a cure. Carole made an impact on my life and I will miss her. Donations in her memory may be made to KOH on their website.
Dee
Every Day is a Blessing! I was blessed to have Carole in my life.
Sunday, January 31, 2016
My Extraordinary Healer
Over the past few years I have read CURE® Magazine. I have especially like reading the the stories written by patients about their relationships with their oncology nurses. The Magazine runs a contest in which patients nominate their oncology nurses for the Extraordinary Healer® Award for Oncology Nursing. Contest finalists attend the Oncology Nursing Society's (ONS) Annual Congress where the winner is announced.
Last year, I decided it was time for me to write about my relationship with Carla, one of the many special oncology nurses at the Rutgers Cancer Institute of New Jersey. Although we didn't win the contest we were still honored to have my nominating essay as part of the collection shared in CURE® Magazine's book, extraordinary healers volume 9. CURE® produced the book with the support of Novocare, Takeda Oncology and Amgen. Thanks Novocure, Millenium Takeda Oncology and Amgen for supporting this project.
Imagine how happy I was when I turned the book over and saw this quote from my essay.
"What makes an extraordinary nurse? One who listens to their patients during their very first treatment and provides excellent oncology care - with a large dose of compassion when the unusual occurs."
Carla certainly made a difference in my chemotherapy experience. She is more than my nurse she is my friend.
If your life has been touched by an amazing, compassionate oncology nurse I urge you to nominate your nurse this year for CURE® Magazine's Extraordinary Healer® Award for Oncology Nursing.
For more information please see: http://www.curetoday.com/extraordinaryhealer
Dee
Every Day is a Blessing! And my life was blessed by Carla.
Last year, I decided it was time for me to write about my relationship with Carla, one of the many special oncology nurses at the Rutgers Cancer Institute of New Jersey. Although we didn't win the contest we were still honored to have my nominating essay as part of the collection shared in CURE® Magazine's book, extraordinary healers volume 9. CURE® produced the book with the support of Novocare, Takeda Oncology and Amgen. Thanks Novocure, Millenium Takeda Oncology and Amgen for supporting this project.
| Cover Vol 9 extraordinary healers |
![]() |
| My essay / photo of Carla and I |
![]() |
| My Essay page 2 |
Imagine how happy I was when I turned the book over and saw this quote from my essay.
"What makes an extraordinary nurse? One who listens to their patients during their very first treatment and provides excellent oncology care - with a large dose of compassion when the unusual occurs."
Carla certainly made a difference in my chemotherapy experience. She is more than my nurse she is my friend.
If your life has been touched by an amazing, compassionate oncology nurse I urge you to nominate your nurse this year for CURE® Magazine's Extraordinary Healer® Award for Oncology Nursing.
For more information please see: http://www.curetoday.com/extraordinaryhealer
Dee
Every Day is a Blessing! And my life was blessed by Carla.
Monday, January 11, 2016
More than just BRCA1 & 2
Most women diagnosed with ovarian cancer have heard of the link between germline mutations in the BRCA 1 & 2 genes and ovarian cancer. The Society of Gynecologic Oncology recommends that all women diagnosed with ovarian cancer have genetic testing for those mutations. Studies have also found that Lynch Syndrome ( formerly known as “hereditary nonpolyposis colorectal cancer” (HNPCC) ) places a women at increased risk for ovarian cancer. I wrote about these germline mutations in a blog post in September 2015.
On December 30, 2015 JAMA Oncology journal published the article
Inherited Mutations in Women With Ovarian Carcinoma
This study of 1915 women looked at the importance and prevelance of other germline ( passed from parent to child) mutations associated with ovarian cancer.
They found that 18% of the women studied carried
"pathogenic germline mutations in genes associated with OC risk. PALB2 and BARD1 are suspected OC genes and together with established OC genes (BRCA1, BRCA2, BRIP1, RAD51C, RAD51D, MSH2, MLH1, PMS2, and MSH6)"
So we now have 11 genes suspected of causing hereditary ovarian cancer. (Since the article is behind a paywall I could not access the complete study.) A commentary on that research can be found here. The commentary raises the issue that the mutations to BRIP1, RAD51C, RAD51D and BARD1 have not been well characterized and have uncertain clinical use at this time when compared to BRCA 1 & 2.
The commentary states that investigators should look at "different paradigms for identifying key new factors and mechanisms underlying OC risk" I look forward to those studies.
Dee
Every Day is a Blessing!
Additional Sources:
Ovarian Cancer Risk and Prevention
http://www.cancer.net/cancer-types/ovarian-cancer/risk-factors-and-prevention
Lynch Syndrome
http://www.cancer.net/cancer-types/lynch-syndrome
Hereditary Breast and Ovarian Cancer
http://www.cancer.net/cancer-types/hereditary-breast-and-ovarian-cancer
On December 30, 2015 JAMA Oncology journal published the article
Inherited Mutations in Women With Ovarian Carcinoma
This study of 1915 women looked at the importance and prevelance of other germline ( passed from parent to child) mutations associated with ovarian cancer.
They found that 18% of the women studied carried
"pathogenic germline mutations in genes associated with OC risk. PALB2 and BARD1 are suspected OC genes and together with established OC genes (BRCA1, BRCA2, BRIP1, RAD51C, RAD51D, MSH2, MLH1, PMS2, and MSH6)"
So we now have 11 genes suspected of causing hereditary ovarian cancer. (Since the article is behind a paywall I could not access the complete study.) A commentary on that research can be found here. The commentary raises the issue that the mutations to BRIP1, RAD51C, RAD51D and BARD1 have not been well characterized and have uncertain clinical use at this time when compared to BRCA 1 & 2.
The commentary states that investigators should look at "different paradigms for identifying key new factors and mechanisms underlying OC risk" I look forward to those studies.
Dee
Every Day is a Blessing!
Additional Sources:
Ovarian Cancer Risk and Prevention
http://www.cancer.net/cancer-types/ovarian-cancer/risk-factors-and-prevention
Lynch Syndrome
http://www.cancer.net/cancer-types/lynch-syndrome
Hereditary Breast and Ovarian Cancer
http://www.cancer.net/cancer-types/hereditary-breast-and-ovarian-cancer
Friday, January 1, 2016
Here We Come 2016
I had a wonderful 2015. I attended my son's wedding, raised over $3000 for ovarian cancer research at Rutgers Cancer Institute of New Jersey, and walked a 5K at Disneyland with my daughter to celebrate my 10th cancerversary .
I spent lots of fun times with family and friends. But there were some more challenging times too. My husband had some health issues and a surgery and I dealt with a knee injury, neuropathy and chemobrain. I also said farewell to three women who I met through an ovarian cancer support group and the Graceful Hope Foundation - Jeanne, Linda and Corinne. I know this sounds corny but I do feel blessed to have lived another year.
For the past few years my first post of the new year includes a list my aspirations for the coming year. Resolutions are so 2010. I looked back at the aspirations I made at the beginning of this year. It seems like most of the things I looked forward to doing last year (in italics) are what I still want to do this year so I'll repost the list and add some new items.
Dee
Every Day is a Blessing!
I spent lots of fun times with family and friends. But there were some more challenging times too. My husband had some health issues and a surgery and I dealt with a knee injury, neuropathy and chemobrain. I also said farewell to three women who I met through an ovarian cancer support group and the Graceful Hope Foundation - Jeanne, Linda and Corinne. I know this sounds corny but I do feel blessed to have lived another year.
For the past few years my first post of the new year includes a list my aspirations for the coming year. Resolutions are so 2010. I looked back at the aspirations I made at the beginning of this year. It seems like most of the things I looked forward to doing last year (in italics) are what I still want to do this year so I'll repost the list and add some new items.
- Continue to visit my children and grandchildren(Visiting my grandsons will be more difficult after they move overseas in May.)
- Visit India
- Continue to advocate for ovarian cancer patients and research through this blog and the #gyncsm community
- Learn more about non-profit management and social media
- Apply to attend the Biennial Survivorship conference and ASCO annual meeting
- Help my dog, Amber, achieve her Excellent title in Standard Agility ( Amber did get her AKC Excellent title in Jumps with Weaves)
- Register Amber for UKI agility
- Continue to increase my physical activity and flexibility so that I can be a better dog handler and improve my health
- Continue to paint (Would love to try my hand at trompe l'oeil and pieces of furniture)
- Visit the state of Maine
- Take an online course - maybe art history, public health or theology
Dee
Every Day is a Blessing!
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