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!
I hope women diagnosed with ovarian cancer who live in New Jersey and around the country will find this site useful.
A Mayo Clinic research team has found evidence
suggesting that premenopausal women who are not at high risk of ovarian
cancer should not have their ovaries removed for the purpose of cancer
Dee's Note: Removal of the ovaries should only be considered if you have a BRCA mutation. The side effects from ovary removal may lead to other health issues - cardiac, bone etc.
According to research published this month in
the New England Journal of Medicine, the PARP inhibitor niraparib
improves progression free survival in recurrent, platinum-sensitive
women both with and without germline BRCA mutations.
Dee's Note: This Parp inhibitor showed significant improved progression-free survival versus placebo for women with and without BRCA mutations or homologous recombination deficiency.
New OCRFA-funded research demonstrates how a drug
already in clinical trials could be used to boost anti-tumor immunity
and cause T-cells to target the cancer directly while minimizing side
Dee's Notes: PDL-1 and PD-1 work to prevent T-cells from fighting cancer cells. It was found that BET ( bromodomain and extraterminal domain)inhibitors can stop BRD4 (bromodomain-containing protein 4) which contributes to PDL-1 expression.
The European Society of Medical Oncology published a
study last week that indicated the reasons for a decrease in deaths
from ovarian cancer in both young women and post-menopausal women.
Dee's Notes: I am confused about how the deaths from ovarian cancer can decrease if the number of women diagnosed has stayed constant. Women diagnosed with ovarian cancer are no longer on oral contraceptives. Anyone have insight into this issue please leave a comment below.
While primary cytoreductive surgery followed by
chemotherapy is the standard of care for newly diagnosed women with
advanced ovarian cancer, newly issued practice guidelines suggest that
some patients may benefit more from first-line neoadjuvant
chemotherapy (NACT) and followed by surgery.
Dee's Notes: Newly diagnosed women with stage IIIC or IV epithelial ovarian cancer who may only achieve suboptimal debulking ( less than 1 cm) should receive chemotherapy first.
A study published recently in JAMA Oncology showed
that CA-125 tests and CT scans are routinely used in ovarian cancer
surveillance testing, even though evidence has shown there is no
clinical benefit to using these tests
Dee's Notes: This prospective study showed no benefit to using CA-125 / CT scans as surveillance for OC. "During a 12-month period, there was a mean of 4.6 CA-125 tests and 1.7 CT scans performed per patient"
Earlier today I realized that almost 30 days have gone by without posting to this blog. My best laid plans to keep up with posting just did not work out.
September is Ovarian Cancer Awareness Month. This year more so than in the past I spent a lot of time on Facebook and Twitter posting information about awareness events and information on ovarian cancer. I posted for myself as Women of Teal (@womenofteal) and for the Kaleidoscope of Hope Ovarian Cancer Foundation (KOH) (@koh_nj) .
In addition to the work I did at home on the computer I also attended two KOH events as well as an event that my friends, the Lopez family, held for their foundation, the Janice Lopez Ovarian Cancer Foundation.
On Sept 18th I manned the Survivors Table at KOH's Gail MacNeil Morristown Walk. There were special survivor t-shirts, beads and notebooks for survivors. I was so happy to meet eight women who had been diagnosed with ovarian cancer. I created a large kaleidoscope image that the women could sign with their date of diagnosis. Eleven women who had been diagnosed with ovarian cancer signed the image.
I also got a pleasant surprise. I was awarded the KOH Spirit of Courage Award.
Some of the many walkers at the Gail MacNeil Morristown KOH Walk
Lynn Franklin , President of KOH awarded me the Spirit of Hope Award.
The next Saturday I attended the Avon-by-the-Sea KOH walk, once again manning the Survivor Table. The day was rainy but that did not stop over 700 walkers from walking the boardwalk at the Jersey shore to help raise funds for ovarian cancer research.
Walkers on the beach waiting for the walk to start.
Bagpipes on the Boardwalk.
I was so happy to add more names to the kaleidoscope image.
Then on Sunday, September 25th, I attended the Janice Lopez Ovarian Cancer Foundation 3rd Concert for the Cure. It was an amazing afternoon listening to the Encore Orchestra of NJ and some amazing Broadway vocalists. Once again I was blessed to be honored by the Foundation and received their first Teal Champion Award.
What a month for me! I appreciate the awards and being able to share some fun times with my husband and friends. Yet there were times during this month that I felt sad. Sad because so many women who were my friends and advocacy colleagues were not with me at these events as they had been in the past. I missed Carole, Janice, Gail, Pam and others. It is in their memory that the advocacy work that I do takes on a special meaning for me.
During the 9 years I have written this blog I have read and reviewed a number of books by cancer patients, their caregivers and their physicians. The focus of these books has always been cancer. During that time period I have also promoted the need for more patient-centered care. My definition of patient centered care is treating the person not the disease based on the individual patient's needs and situation.
When Dr. Zachary Berger, ( @ZackBergerMDPhD),
a physician at Johns Hopkins, who I follow on Twitter, tweeted that he had published a new book, Making Sense of Medicine- Bridging the Gap Between Doctor Guidelines and Patient Preferences I was interested in reading it. I wondered how he would describe the importance of patient-centered care from his, a physician's, perspective.
His book contains chapters on various common chronic diseases - High Blood Pressure, Arthritis and Diabetes. Within each chapter is the story of his patient's experience with illness and his interactions with those patients. Some of those interactions were funny and after reading some I was angry at the situation. I could identify with some of the stories as patients with multiple diseases dealt with the system. Although there is not a separate section for or about those living with cancer there are chapters that are useful to the cancer patient and survivor such asDepression, Surgery, Guidelines and Is Half of all Research Wrong?.
His chapter on Poverty : Making Decisions, Our Health System - And You in the Middle is very thought provoking and points out the health care disparities in the United States. Berger writes " we don't get the right treatments to exactly the right person just when and where they need it ." He goes on to say "And giving too much care is a subset of this problem."
As I read the book I underlined many phrases and paragraphs.
When I read "...The biomedical assumption that knowing what is broken will tell us how to fix it is not always justified". I thought of a friend who turned down a spinal tap to see if there was cancer in her brain because she had decided to stop treatment.
When speaking of guidelines Berger says " there is no perfect evidence that matters the same way to everyone, everywhere". That is why asking patients their needs and wants is so important.This section is the only one in which I would add that ASCO (American Society of Clinical Oncology) is including patients on all their Clinical Guideline Panels and they are having a voice as those guidelines are developed.
Reading "There will always be such situations in which the personal question outpaces the available scientific evidence." I thought of cancer patients with multiple recurrences / metastatic disease with different treatment options available to them and being in uncharted waters.
In Revisiting the Biomedical Paradigm he writes"Identifying conditions (diseases) through signs , symptoms, following them up with diagnosis and pursuing effective treatment is not the only effective path to help . " He recommends a more sensible approach "science of the individual". Yes!
I could go on but I would prefer that you read the book and find the sections that speak to you and an individual patient, doctor or caregiver .
If you are a patient, caregiver or health care provider I highly recommend Making Sense of Medicine. It will make all of you think. Patients, I hope it empowers you to ask questions and become a partner in your health care.
I appreciate the opportunity to read and review this book.
I am unable to read the entire article since it is by subscription only but will summarize the information that was provided and in other articles I read regarding the research.
In 2009, a study (Rustin) found that treating ovarian cancer recurrence on rising cancer antigen blood test CA125 increased the use of chemotherapy treatment and decreased quality of life.
This prospective cohort study of over 1200 women, in remission after initial surgery and chemotherapy, took place at 6 NCI Comprehensive Cancer Centers. They looked at the use of CA-125 and CT scan before and after 2009.
The results showed the use of CA-125 and CT scan before and after 2009 was similar. In those women whose CA-125 doubled there was not difference in re-treatment before or after 2009. The study found in a 12 month period "a mean of 4.6 CA-125 tests and 1.7 CT scans performed per patient". They found that this resulted in "a US population surveillance cost estimate of $1 999 029 per year
for CA-125 tests alone and $16 194 647 per year with CT scans added." The Guidelines: NCCN Why has the use of CA-125 and CT not change since 2009? Maybe a reduction was not seen because of what is written in the NCCN Guideline for Ovarian Cancer released in 2015. The NCCN Guideline for Ovarian Cancer recommends follow up tests every 2-4 months for 2 years then every 3-6 months for 3 years then once a year after 5 years. The tests recommended are : Physical and pelvic exam CA-125 if initial results were high. CBC CT, MRI , PET as needed Chest X-ray as needed Genetic counseling if not already done.
SGO lists the CA-125 as optional for surveillance in previously diagnosed women.
They stated: "Until the ideal surveillance is determined, individualized patient plans that consist of a thorough assessment of symptoms and physical examination, which includes a pelvic examination,should be undertaken. The role for CA125 level monitoring should be discussed with patients. The pros and cons of imaging should be discussed with the patients who do not have an elevated CA125 level at the time of diagnosis.When a recurrence is suspected based on symptoms, examination, or CA125 level,a CT scan of the chest, abdomen, and pelvis should be obtained to determine the extent of the disease. PET scans are a useful adjunct when CT scans are indeterminate (Table 3)."
My recurrence on my liver and spleen in 2008 was picked up on a follow-up CT scan. My CA-125 was 17 up from 13. I wasn't worried about a recurrence at the time because my CA-125 was still normal but there it was. I'm thankful that the CT scan was done so that one of my treatment options could be surgery then chemo. My CT showed only 2 distinct lesions so I chose to have surgery first.
When the 2009 study came out, I told my gyn onc that I no longer
wanted to have the CA-125 test done. We agreed that I would not begin
treatment for a recurrence unless I had symptoms or something showed up
on a CT scan but I continued to have the CA-125 test. Based on my personal experience when CA-125 goes up even a little bit I get anxious and think recurrence. I agree and understand that chemotherapy treatment should not begin on a rising CA-125 alone. But what about the fear and anxiety that a women feels during the watch and wait period?
I also know that radiation from multiple CT scans raises my risk for other cancers. But right now there is no other way ( unless I use an MRI or PET) to determine if I am having a recurrence. With data showing the rate of recurrence in ovarian cancer is very high, what is a woman to do?
Based on the SGO and NCCN guidelines a personalized approach to determining surveillance is what is needed until as the SGO paper stated "the ideal surveillance is determined"
Earlier this week I met my friend, Sandy, for lunch. Sandy and I first meet when we attended the Gynecologic Cancer Support Group meetings at our cancer center in 2007. We were both diagnosed in 2005 with stage 3 serous epithelial ovarian cancer. We became friends and have stayed in touch even though Sandy now lives half the year in the Florida Keys. Since she returns to NJ for the summer, we took this opportunity to get together.
Our lunch conversation was not about politics or the heat wave. Nope we talked about our gynecologic oncologists and our nurses. Even after more than ten years, those doctors and nurses still play an important role in our lives. Both our doctors are practicing in different locations now. So we talked about what went into the decision to stay at our cancer center or follow them to their new locations. Not an easy decision at all.
Then we talked about how even 11 years out, we still worry about a recurrence. We laughed about how we can't multi-task any longer because when we do, we forget things. We weren't talking about forgetting where we left our keys or glasses. We were talking about finding the right words / names for things. We talked about how on some days we still need to nap because we are too exhausted to function properly. We talked about how our toes are still numb and how we can literally trip over our own feet- and it is not the shoes we are wearing. We talked about how we still get nervous when we need to have our blood drawn for our CA-125 level. We talked about gaining weight. Do you feel bloated? ( One of the signs of ovarian cancer.) We talked about how neither of us have had a CT scan in over 2 years. Should we get one? We don't want to expose ourselves to the radiation but we know that for us that is the only way we will find a recurrence. Decisions, Decisions.
I talked about my advocacy work and she talked about her paintings and recent gallery exhibits. We talked about our families. We have been blessed and we have accomplished a lot over the past 11 years.
Then we talked about Pam and Sharon and Rita Kay and others from our support group. We can't understand why we are two of the lucky ones- women who have lived ten plus years after an ovarian cancer diagnosis. Sure we try to exercise more and eat better - less red meat , more fruits and vegetables but nothing dramatic.
Honestly, we don't know why we are still alive... and why our friends are not...eleven years later.
Every Day is a Blessing! Blessed to be celebrating my 11th cancerversary on July 29th.