Sunday, November 19, 2017

A Hobby Begun During Treatment

When I was in treatment in 2005 a friend of my son's gave me an acrylic painting kit.  That kit started the hobby I have enjoyed the past few years. I hope you enjoy these dog paintings as much as I enjoyed creating them.

























Dee
Every Day is a Blessing!

Monday, November 6, 2017

A Day on the Hill

Along with other gynecologic patient advocates, I had the privilege of joining gynecologic oncologists from the Society of Gynecologic Oncologists in Washington, DC on Friday for their Capital Visit Day.

Thursday evening we had a training session during dinner. This training allowed us to learn the best way to ask our Senators and Congressmen/women to support funding for gynecologic cancer research.

On Friday, I headed to Capital Hill with Dr Ginger Gardner, a gynecologic oncologist from Memorial Sloan Kettering Cancer Center. We visited with the legislative assistants for Senators Menendez (NJ), Booker (NJ), Schumer (NY) and Gillibrand (NY) and Representatives Watson Coleman (NJ-12), Maloney (NY-12) and Frelinghuysen(NJ-11). 


As we introduced ourselves to each assistant I was able to share a bit about my ovarian cancer diagnosis and my participation in clinical trials. Then we moved on to our "asks".

Increased funding for gynecologic cancer clinical trials at the NCI/NIH 
In the past few years there has been a decrease in the number of NIH clinical trials available to women with gynecologic cancers.In 2012 there were 56 trials for gynecologic cancers while in 2016 there were 18 trials.
Here is the information sheet we left during our visits.


Preserve the Congressionally Directed Medical Research Program (CDMRP) at the Department of Defense
The Senate version of the National Defense Authorization Act of 2018 contains 4 sections (733, 891, 892, 893) which would basically eliminate the CDMRP. The CDMRP includes the Ovarian Cancer Research Program (OCRP). The House version of the bill does not include those sections.

There are currently 850,000 active duty female service members, wives and adult daughters. Approximately 11,800 will be diagnosed with ovarian cancer in their lifetimes at a cost of $971 million. 
The OCRP also includes the Ovarian Cancer Research Academy which  helps to develop young investigators to become lifelong ovarian cancer researchers.


We left this brochure, 

 (http://cdmrp.army.mil/ocrp/pbks/ocrppbk2017.pdf ) with each assistant. I recommend you read through it to see the groundbreaking basic research being done at the the OCRP.

I urge you to reach out to your Senators and the Congressman/woman from your district and ask them to support these crucial research programs. Thank you!


Dee
Every Day is a Blessing! 








Wednesday, October 25, 2017

I Took a Break

September,  Ovarian Cancer Awareness month is a very emotionally and physically draining month for me. I spend a good deal of time thinking about and talking about ovarian cancer - symptoms, treatments, statistics. I posted to this blog every day as well as shared information from other organizations  in daily promotions on Facebook and Twitter. I attended fundraising walks and other events to raise funds for ovarian cancer research.

In the middle of the month I had an appointment with my gyn onc for my 6 month check-up. I also had a CT scan since my CA-125 has been creeping. I dealt with so many emotions including the fear I might have recurred. The exam and CT report were good so I am set for 6 more months.

But during this month of ovarian cancer, I remembered. I remembered women who became my friends over the past 12 years who have died because of this disease - like Janice, Carol, Jane, Sherry and the list goes on. It made me angry and sad.

I know that when that happens I need to take a break. And that is what I did. I stepped away and concentrated on family ( visits with kids and grandsons)  and other non-cancer things such as beginning work on two paintings. I recharged my batteries to begin my advocacy work again.

And then last week,  I got this in the mail !














As a Patient Advocate Member of ASCO I was chosen as a 2016 Advocacy Champion - Speaker's Club for legislative advocacy work ( e-mails , tweets and blog posts)  that I did for ASCO on cancer research and funding issues in 2016. I don't do what I do to be recognized but it felt good to be appreciated.

If you are a patient advocate you should consider joining ASCO. You will be able to network with the top oncologists in the world and stay on top of the latest research in precision medicine.  Check out this membership page for more information https://www.asco.org/membership

I'll be posting more ovarian cancer research news in a few days.

Dee
Every Day is a Blessing!



Friday, September 29, 2017

Day 29 A month of Teal : Your Verse - My Verse

"What will your verse be? 
Each of us has something to share. A voice, a passion, a perspective. The potential to add a stanza to the world's story.   ..."

Take a few minutes to watch this ad. Don't skip it - listen to the words and look at the images.

Apple - iPad Air - TV Ad - Your Verse from EPC Group.net on Vimeo.

Apple ran this series of advertisements for the Apple iPad Air in 2014 . I thought I might want to write a blog post based on my verse so I jotted this idea down on my blog topics sheet.

As we come to the end of Ovarian Cancer Awareness month I thought this would be the perfect time to talk about my verse.

I have always been interested in science. When I graduated high school the quote going with my yearbook photo was - To the Moon and Beyond. I thought I would become and astronaut.  I never did become one, I became a chemical engineer and teacher, but the science I learned helped me many times on my life's journey.

When I was diagnosed I didn't know a lot about ovarian cancer and I hadn't met anyone with ovarian cancer. I reached out to Cancer Hope Network and talked to a support volunteer who was a 5 year ovarian cancer survivor. Then my gynecologic oncologist recommended I reach out to the Kaleidoscope of Hope Ovarian Cancer Foundation and the LIVESTRONG Foundation. Both organizations gave me the tools to learn more, empowered me to share my story, allowed me to network with other women diagnosed with the disease and gave me hope.

In the time since my initial diagnosis I have spent a great deal of time learning about ovarian cancer from genetics to pathology to histology to immunotherapy to targeted therapies. I have been given amazing opportunities to interact with oncologists, genetic counselors, researchers and other women advocates. I have shared my story with small groups of women and with audiences filled with health care providers and cancer researchers. 

I am blessed to have been given the opportunity to survive ovarian cancer and my verse must include being the voice of those women whose lives were taken too soon by a disease where an effective screening test has still not been developed.

So what is the  stanza I have added to the world's story -

Hearing the word cancer,  
My knees are weak.
With family, faith and expert doctors 
I remain in this world.
Now I take what I love and 
share my "voice,  passion, and perspective
so all will know about this disease and 
those women whose life's journey include
ovarian cancer. 

What is your verse?


Dee
Every day is a Blessing!

Thursday, September 28, 2017

Wednesday, September 27, 2017

Day 27 A Month of Teal: 50 States of Teal

The report 50 States of Teal Ovarian Cancer Care Across America is an undertaking of the OCRFA.
The Report  "evaluated the performance of each state in connecting women to quality ovarian cancer care through 10 metrics. These metrics span the entire continuum of care, including prevention, diagnosis, treatment, survivorship and end-of-life care.  We awarded states one point for each metric they met, for a maximum of 10 points. The last update to the report was in 2015.

I was interested in seeing how NJ, my home state,so I searched the site and found this.

 

How did your state do? 


Dee
Every Day is a Blessing!

Tuesday, September 26, 2017

Day 26 A Month of Teal : Twitter Images for Advocacy

I use twitter to raise awareness of ovarian cancer both as an individual and as the co-moderator of the #gyncsm ( gyn cancer social media) chat.  Over the past few weeks I have compiled a few Tweets which shared informative images. Thank you OCRFA, SGO, NOCC, Foundation for Women's Cancer and the Sandy Rollman Ovarian Cancer Foundation for these images.


Full image
















Have you seen any photos or graphics that you feel have helped to raise awareness this month? Please share a link in the comments below.  

Dee
Every Day is a Blessing!

Monday, September 25, 2017

Day 25 A Month of Teal: OC Around The World

Women are at risk for ovarian cancer around the world.

Ovarian Cancer is the 7th most common cancer worldwide.
 *
There were 239,000 new cases of ovarian cancer worldwide in 2012.
 *
The rate of ovarian cancer was 2 times higher in Central and Eastern Europe than in Eastern Asia.
*
The highest incidence of ovarian cancer was in Europe and Northern America; 
and the lowest incidence in Africa and Asia 
*
About 58% of ovarian cancer cases occurred in less developed countries.
 *
The highest death rates from ovarian cancer were found in 
Lithuania, Ireland, Latvia, Poland and Norway



Sources:

http://www.wcrf.org/int/cancer-facts-figures/data-specific-cancers/ovarian-cancer-statistics

https://academic.oup.com/annonc/article/27/11/2017/2467050/Global-trends-and-predictions-in-ovarian-cancer

Dee
Every Day is a Blessing

Friday, September 22, 2017

Day 22 A Month of Teal: Gene Mutations and Ovarian Cancer

Most ovarian cancers are sporadic. They are caused by somatic mutations.

But about 20 to 25 percent of women diagnosed with ovarian cancer have a hereditary tendency to develop the disease. This tendency is called Hereditary Breast and Ovarian Cancer Syndrome (HBOC). HBOC may be diagnosed if your family history shows multiple members of the same side of your family being diagnosed with breast and/or ovarian cancer.
Cancer.net lists these situations as indicative of HBOC
  • 1 or more women are diagnosed at age 45 or younger
  • 1 or more women are diagnosed with breast cancer before age 50 with additional family history of cancer, such as prostate cancermelanoma, and pancreatic cancer
  • There are breast and/or ovarian cancers in multiple generations on the same side of the family, such as having both a grandmother and an aunt on the father’s side both diagnosed with these cancers
  • A woman is diagnosed with a second breast cancer in the same or the other breast or has both breast and ovarian cancers
  • male relative is diagnosed with breast cancer
  • There is a history of breast cancer, ovarian cancer and/or pancreatic cancer on the same side of the family
  • There is a history of breast and/or ovarian, pancreatic, or male breast cancer in a family of Ashkenazi Jewish ancestry
What germline mutations are linked to Hereditary Ovarian Cancer?
"Between 65 and 85 percent of germline mutations are in the BRCA1 or BRCA2 gene. The lifetime risk of ovarian cancer in women with a BRCA1 gene mutation is 40 to 60 percent, and the lifetime risk in women with a BRCA2 gene mutation is 20 to 35 percent."

"A significantly increased risk of ovarian cancer is also a feature of certain rare genetic syndromes, including a disorder called Lynch syndrome. Lynch syndrome is most often associated with mutations in the MLH1 or MSH2 gene and accounts for between 10 and 15 percent of hereditary ovarian cancers."

Are there other mutations linked to  ovarian cancer? 
Yes, other mutations  include:
Source:NIH  https://ghr.nlm.nih.gov/condition/ovarian-cancer#genes  

It is recommended by the Society of Gynecologic Oncology that all women diagnosed with ovarian cancer have genetic testing. (https://www.sgo.org/wp-content/uploads/2012/09/PB-182.pdf)
The SGO also has available a Genetics Toolkit 2016  online.

Additional information on HBOC may be found on the FORCE website http://www.facingourrisk.org/index.php 

My next post for Ovarian Cancer Awareness Month will be on Monday Sept 25th. 

Dee
Every Day is a Blessing! 


Thursday, September 21, 2017

Day 21 A Month of Teal : Your Treatment Team

In the past few posts I have discussed different treatments that women diagnosed with ovarian cancer may undergo . You might think the only members on your health care team are a gynecologic oncologist or surgeon, oncologist and oncology nurses. That is what I thought too initially. But I was wrong.

I learned in a very short period of time that there were other very valuable members of my team.

On my team was my pharmacist who helped me create a schedule for taking my medications to prevent nausea, constipation and pain without interfering with other prescriptions I was taking.

On my team was my social worker who was there when I needed a shoulder to cry on or a technique to keeping me calm while waiting for test results or when my treatment was delayed due to low white blood counts.

On my team was my nutritionist  who gave me tips on what to eat to try to get my hemoglobin higher and how to eat smaller meals through the day.

On my team was my genetic counselor who I spoke to before ( we put together a pedigree/ family tree) and after having genetic testing ( we discussed the results).

On my team was my pathologist who even thought I never meeting him/her in person provided me with information that impacted the treatments I had.

On my team was my radiologist who let me know when my tumors were shrinking and when I was disease free. I was lucky enough to meet one radiologist in person.

On my team was my clinical trial nurse who gave me her cell phone so I could reach out to her at any time with questions and concerns.

On my team were the oncology treatment nurses who made sure I was administered the correct chemotherapy.

On my team was the cancer center staff who greeted me warmly as I signed in for chemo and scheduled port flush and  follow-up appointments.

All of these people played a role in my life for months at a time.

You may read more about your treatment team on the Patient Resource Page
http://www.patientresource.com/Ovarian_Cancer_Team.aspx 
and
Cancer Care
https://www.cancercare.org/publications/59-your_health_care_team_your_doctor_is_only_the_beginning


Dee
Every Day is a Blessing!  


Wednesday, September 20, 2017

Day 20 A month of Teal : Radiation Therapy Treatments

Instead of using chemicals, radiation therapy uses high energy particles such as x-rays to destroy cancer cells.  A radiation oncologist is specially trained to deliver this therapy.

While radiation therapy is not usually given for initial treatment of ovarian cancer there may be times when a women experiencing a recurrence may be offered radiation for small localized areas such a lymph nodes or small lesions in difficult to operate areas.

Most radiation treatments are given using external radiation but for some gynecologic cancers internal radiation therapy or brachytherapy is used. 

Side effects include
  • fatigue, 
  • mild skin reactions, 
  • upset stomach
  • loose bowel movements.

For additional information please visit
http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/cervical/diagnosis-and-treatment/radiation-therapy/

or print out this brochure from ASTRO.
http://radonc.ucla.edu/workfiles/gyn07.pdf 

Dee
Every Day is a Blessing! 

Tuesday, September 19, 2017

Day 19 A Month of Teal: Treatments for Recurrence - Chemotherapy/ targeted therapies

Depending on how your disease presents itself on recurrence you may be offered surgery, chemotherapy or a clinical trial. I was offered surgery and chemotherapy or a clinical trial. A majority of women will have chemotherapy but I strongly urge women to consider a clinical trial.

Below is a list of drugs you may be offered:

Chemotherapy Drugs for Recurrence platinum sensitive:
  • Cisplatin or carboplatin + paclitaxel 
  • Carboplatin + gemcitabine
  • Carboplatin + pegylated liposomal doxorubicin
  • Carboplatin + epirubicin
  • Cisplatin + doxorubicin + cyclophosphamide  ( recurrence 12+yrs)

Carboplatin and Taxol are considered the standard for first time platinum sensitive recurrence

Chemotherapy Drugs for Recurrence Platinum Resistant
  • Paclitaxel
  • Topetecan
  • Gemcitabine
  • Pegylated liposomal doxorubicin
  • Pegylated liposomal doxorubicin + trabectedin
  • Etoposide
  • Hexamethylmelamine (Altretamine)
  • Irinotecan
  • Oxaliplatin
  • Vinorelbine
  • Fluorouracil and capecitabine
  • Tamoxifen
  • Pemetrexed
  • Bevacizumab
  • The U.S. Food and Drug Administration has approved the use of bevacizumab ( Avastin)  in combination with pegylated liposomal doxorubicin, paclitaxel, or topotecan.  Two trials OCEANS and AURELIA showed the improvement in PFS ( progression free survival).
  • Olaparib (PARP inhibitor)- maintenance (9/12/17 FDA Approval) / after 3 or more chemotherapy treatments and a BRCA mutation (2014 FDA approval)
  • Rucaparib ( BRCA mutations, 2 or more chemotherapy treatments, 2016)
  • Niraparib(Maintenance therapy BRCA mutation not required)

For additional information about each of these treatments and evidence for their use  please see
https://www.cancer.gov/types/ovarian/hp/ovarian-epithelial-treatment-pdq#link/_789 
https://www.cancer.gov/news-events/cancer-currents-blog/2017/fda-olaparib-ovarian-cancer-maintenance?cid=eb_govdel

or the NCCN guideline page
https://www.nccn.org/patients/guidelines/ovarian/index.html#63/z 

Dee
Every Day is a Blessing ! 

 

 

Monday, September 18, 2017

Day 18 A Month of Teal : Ovarian Cancer - Recurrence is Common

Recurrence was one thing I tried not to think about when I was initially diagnosed. But more than 80% of women diagnosed with ovarian cancer ( or fallopian tube or primary peritoneal cancer ) have a recurrence after completing initial treatment

Most likely once you finish front line treatment for ovarian cancer your doctor will follow up with you on a regular basis. He/she may ask you to have your CA-125 level checked every 1-3 months . Increases over time in your level of CA-125 may signal a recurrence. A trial by the Medical Research Council (MRC) and the EORTC  showed there was no benefit to women in detecting and treating a rising CA-125. If your CA125 rises you may be asked to have a CT scan.

Patients with confirmed recurrent disease are separated into two groups:
  • Platinum resistant or platinum refractory recurrence is when a women 's disease will progress while on initial treatment or when the disease returns within 6 months of completing initial treatment.  A women will usually begin treatment with a drug other than the carboplatin/cisplatin taxol combination that she was given originally.
  • Platinum sensitive recurrence  is when the disease recurs more than  6 months from finishing initial treatment. In this case, most women are given a platinum drug and another chemotherapy agent. 
Sources:
NCI
https://www.cancer.gov/types/ovarian/hp/ovarian-epithelial-treatment-pdq#section/_82
OCRFA
https://ocrfa.org/patients/about-ovarian-cancer/recurrence/

Over the next two days  I will share more information on the chemotherapy and targeted therapy treatments a women might receive after a recurrence.

Dee
Every Day is a Blessing!

Friday, September 15, 2017

Day 15 A Month of Teal : Chemotherapy Side Effects and Cold Caps

The chemotherapy women take to treat ovarian cancer may cause a number of side-effects including
  • Nausea*
  • Loss of appetite
  • Mouth sores
  • Increased chance of infection
  • Bleeding or bruising easily
  • Vomiting*
  • Hair loss**
  • Fatigue
  • Constipation
  • Diarhea
* ASCO recently released a guideline for prescribing anti-nausea medication called Antiemetics:ASCO Clinical Practice Guideline Update. You may read the full text here> http://ascopubs.org/doi/10.1200/JCO.2017.74.4789 

**Recently, the FDA has approved a cold cap (DigniCap and Paxman cooling systems,) that can be worn during chemotherapy which prevents  hair loss. See this ACS page for more information.
https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/hair-loss/cold-caps.html


Be sure to notify your doctor or nurse if you should experience any of these side effects.

I'll be back on Sept 18th to share more information with you. 

Dee
Every Day is a Blessing!

Thursday, September 14, 2017

Day 14 A Month of Teal: Chemotherapy on Initial Diagnosis

The section below is an excellent description of the chemotherapy drugs used for ovarian cancer. It can be found in full on the  Cancer.net website sponsored by ASCO.

Ovarian, Fallopian Tube, and Peritoneal Cancer: Treatment Options

"Chemotherapy is the use of drugs to destroy cancer cells, usually by stopping the cancer cells’ 
ability to grow and divide. Chemotherapy is given by a gynecological oncologist or a medical oncologist, a doctor who specializes in treating cancer with medication.
Systemic chemotherapy gets into the bloodstream to reach cancer cells throughout the body. Common ways to give chemotherapy include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed (orally).
A chemotherapy regimen (schedule) usually consists of a specific number of cycles given over a set period of time. A patient may receive one drug at a time or combinations of different drugs at the same time.
Most of the chemotherapy options described below apply to epithelial ovarian cancer, as well as fallopian tube cancer and peritoneal cancer. The type of the chemotherapy used depends on several factors.

  • Adjuvant chemotherapy. This is done to destroy cancer remaining after surgery. This treatment typically consists of carboplatin (Paraplatin) given with paclitaxel (Taxol) or docetaxel (Docefrez, Taxotere) intravenously (IV), which is through the vein. Most of these drugs are given every 3 weeks. 
    Another approach is called “dose-dense” chemotherapy. This is when the drugs are giving weekly instead of every 3 weeks. Some studies show that using dose-dense paclitaxel with carboplatin may improve survival rates compared to giving the drugs every 3 weeks. Talk with your doctor about which scheduling option is best for your situation. (The  recent ICON 8 study reported on at #ESMO17 found no difference in survival between dose dense and every 3 week chemotherapy http://www.esmo.org/Conferences/ESMO-2017-Congress/Press-Media/Press-Releases/ICON8-Trial-Reaffirms-Standard-Dosing-in-Ovarian-Cancer-Chemo)


    In addition, a third way to give adjuvant chemotherapy is to infuse it directly into the abdomen. This is called intraperitoneal or “IP” chemotherapy. This approach can be considered for women with stage III disease after a successful surgical debulking procedure. In previous studies, IP treatment was more effective when compared to intravenous treatment on the every 3-week schedule.

    Studies comparing dose-dense (weekly) IV chemotherapy with carboplatin and paclitaxel to IP chemotherapy with the same drugs show similar outcomes. Doctors are discussing whether the more intense IV approach can replace the use of IP chemotherapy.

    With each of these approaches, doctors consider a variety of factors, such as age, kidney function, and other existing health problems.

    Research studies are underway to see if additional medications, such as PARP inhibitors, should be used. Several studies have evaluated whether adding bevacizumab (Avastin), which is an anti-vascular or “blood vessel growth blocking” antibody, to standard chemotherapy following initial surgery is helpful. In general, bevacizumab used for ovarian cancer has prolonged the time in some patients before the cancer returns; see Latest Research."


    Additional information on chemotherapy may be found on these pages:
    https://www.nccn.org/patients/guidelines/ovarian/index.html 
    http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/ovarian/chemotherapy/


    Dee
    Every Day is a Blessing!

Wednesday, September 13, 2017

Day 13 A Month of Teal : OC Treatment- Surgery

Surgery is the main treatment for ovarian cancer.

Surgery for ovarian cancer should done by a gynecologist oncologist. A gynecologic oncologist is a physician who specializes in diagnosing and treating cancers that are located on a woman’s reproductive organs. Studies have found that women diagnosed with ovarian cancer  have better outcomes when the surgery is done by a gynecologic oncologist.(https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046749/)

For the most common ovarian cancer, epithelial,  surgery is done for staging and debulking. Debulking surgery removes as much of the tumor as possible wherever it may be in the abdomen.  The goal is to achieve optimum debulking or no visible tumors.

Surgery may include:
Hysterectomy
bilateral salpingo-oophorectomy ( both ovaries and fallopian tubes). A Unilateral salpingo-oophorectomy may be done if a woman wishes to have children.
omentectomy ( removal of the tissue covering the organs in the abdomen) .
Lymph nodes ( Lymphadenectomy )
Debulking surgery may include removing tissue from other organs, such as the spleen, gallbladder, stomach, bladder, or colon. 

Most ovarian cancers are treated by surgery and chemotherapy. The order of those treatments depends on the stage at diagnosis. If a women is diagnosed late stage - III or IV your doctor may give you chemotherapy, then complete the surgery and then give you more chemotherapy.

Check the sources below for more information and diagrams. 

Tomorrow I will share information on chemotherapy treatments on initial diagnosis.

Dee
Every Day is a Blessing!

Sources:
https://www.cancer.gov/types/ovarian/patient/ovarian-epithelial-treatment-pdq#section/_184
https://www.cancer.org/cancer/ovarian-cancer/treating/surgery.html
http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer/treatment-options

Tuesday, September 12, 2017

Day 12 A Month of Teal : My Ovarian Cancer Tumor Got a Grade?

Yes, your tumor is given a grade.

A pathologist will look at your tumor and fluids (such as ascites) under a microscope and give it a grade.

Most epithelial ovarian cancers are graded as:
LGSC -- low-grade serous carcinoma
or
HGSC -- high-grade serous carcinoma.

For other histologic types of ovarian cancers (see Day 8 post) pathologists assign a grade of 1, 2, or 3. Grade 1 is most like normal healthy tissue. Well-defined or differentiated are other terms you may hear for Grade 1. Grade 2 more cells abnormal than normal. They call this moderately differentiated. And grade 3 which is most irregular or poorly differentiated.  Grade 3 is believed more likely to spread.

Source: http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer/stages-and-grades

Dee
Every Day is a Blessing!

Monday, September 11, 2017

Day 11: A Month of Teal- Staging Ovarian Cancer

I took the weekend off from posting. I attended the Kaleidoscope Of Hope Ovarian Cancer Foundation's Morristown, NJ walk on Sunday. It was amazing to see so many people dedicated to raising awareness and funds for research. 

Ovarian Cancer Staging
The staging of ovarian cancer follows an international system called the FIGO (International Federation of Obstetrics and Gynecology) staging system.  Staging usually occurs at surgery.

Stage I: The cancer is only in the ovaries or fallopian tubes.
Stage II: The cancer involves one or both of the ovaries or fallopian tubes and has spread below the pelvis, or involves peritoneal cancer.
Stage III: The cancer involves one or both of the ovaries or fallopian tubes, or peritoneal cancer. It has spread to the peritoneum outside the pelvis and/or to lymph nodes in the retroperitoneum (lymph nodes along the major blood vessels, such as the aorta) behind the abdomen.
Stage IV: The cancer has spread to organs outside of the abdominal area.



These stages may include subsets , such as Stage IIIB . For complete descriptions please see the Cancer.net page. http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer/stages-and-grades

Dee
 Every Day is a Blessing! 

Friday, September 8, 2017

Day 8 A Month of Teal -Types of Ovarian Cancer Tumors

I never realized until the end of my treatment that there were different types of ovarian cancer (OC) tumors. My tumor type,  epithelial ovarian cancer is the most common at 95%.

Epithelial OC tumors come from the surface of the ovary. There are 5 subtypes of epithelial OC.
high grade Serous 70%
mucinous 3%
clear cell 10%
endometrioid 10%
low grade serous < 5%


Germ Cell Ovarian Cancer forms in the egg cells of the ovary.
Teratoma - Mature cystic terotoma, Immature teratoma
Mondermal teratoma
Dysgerminoma
yolk sac tumor
embryomal carcinoma
Choriocarcinoma
 
Sex Cord Stromal forms in the sex cord/ ovarian follicles
granulosa cell
Thecoma
Sertoli
Sertoli-Leydig
Fibroma / Fibrsarcoma
Sclerosing stromal
 
To learn more please visit these sources:  
Pathology and claissification of ovarian tumors 
 
New Insights into Ovarian Cancer Pathology
 
John Hopkins Pathology website 

Dee
Every Day is a Blessing!
 

Thursday, September 7, 2017

Day 7 A Month of Teal - Ovarian Cancer Statistics

When I was in treatment in 2005 someone told me to not look the statistics for ovarian cancer because I was a person not a number. But it is important to know the statistics so everyone understands how important research is and why better treatments and ultimately a cure are so important to so many women and their families.
 
An estimated 22,440 new cases of ovarian cancer will occur in 2017, which is 1.3% of all new cancer cases.
     60% of all cases are women with distant disease (metastasized cancer )
     20% of all cases has spread to lymph nodes (regional)
     15% of all cases are found only in the ovary ( localized)
     ~ 6% of all cases are unstaged

Rates for new cases of ovarian cancer has dropped 1.9% each year for the last 10 years.

Ovarian cancer will cause the deaths of 14,080 women in 2017, which is 2.3% of all cancer deaths.

In 2014, 222,060 women were living with ovarian cancer.

The percent of women surviving after 5 years is  46.5% ( 2007-2013)
But the percentage of women varies depending on the stage at diagnosis. ( More on staging tomorrow.)
95% of all women diagnosed at early stage ( localized) disease are alive at 5 years.
73% of all women diagnosed with regional disease are alive at 5 years.
28.9% of all women diagnosed with distant disease are alive at 5 years.

The median age at diagnosis is 63 years.

Source: Seer DATA https://seer.cancer.gov/statfacts/html/ovary.html
Dee
Every Day is a Blessing!

Wednesday, September 6, 2017

Day 6 A Month of Teal - Reduce Your Risk of Ovarian Cancer

There is no known way to prevent ovarian cancer. 
But there are ways to reduce your risk of ovarian cancer.

Take birth control pills for 3 or more years

Have your ovaries and fallopian tubes removed

Have your tubes tied ( tubal ligation)

Give Birth

Breastfeeding


This information is taken from the CDC (https://www.cdc.gov/cancer/ovarian/basic_info/prevention.htm)and Cancer.net websites ( http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer/risk-factors-and-prevention).

If you know you have a genetic mutation that increases your risk of ovarian cancer talk to your doctor about risk reducing surgery. You may also want to talk to a genetic counselor about your risks. Check the National Society of Genetic Counselors page for more information. http://aboutgeneticcounselors.com/

Dee
Every Day is a Blessing!

Tuesday, September 5, 2017

Day 5: A Month of Teal - Ovarian Cancer Risk Factors

1 in 75 women develop ovarian cancer 

Risk factors for epithelial ovarian cancer ( the most common type) include: 
  • Increased Age 
  • Genetics :  BRCA 1 or 2 Mutation, Lynch Syndrome, Peutz-Jeghers syndrome, Nevoid basal cell carcinoma syndrome, Li-Fraumeni and Ataxia-Telangiectasia (http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer/risk-factors-and-prevention )
  • A family history of epithelial ovarian cancer, fallopian tube cancer, peritoneal cancer, premenopausal breast cancer and/or male breast cancer
  • Endometriosis
  • Being of Ashkenazi Jewish heritage
  • Being post menopausal
  • Infertility, never having children
  • Obesity
  • Using menopausal hormone therapy
For more information please see:
https://ocrfa.org/patients/about-ovarian-cancer/risk-factors/ 
http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer/risk-factors-and-prevention


Dee
Every Day is a Blessing! 



Monday, September 4, 2017

Day 4: A Month of Teal - You Experience Symptoms. Now What?

Yesterday I wrote about symptoms. What if you have those symptoms? What do you do?

I recommend reaching out to your gynecologist for an appointment. Be sure to mention the severity and duration of the symptoms you feel. The gynecologist will most likely:
  • do a PAP test ( if you haven't had one )
  • perform internal pelvic exam
  • get your family history ( let her know about any breast, ovarian, colon  cancer in your family - both mother and father's side). Ovarian cancer and breast cancer have a hereditary link (BRCA mutations) as does colon cancer ( Lynch Syndrome).
  • if your doctor has concerns she may send you for a transvaginal ultrasound and also run a CA-125 blood test. 
 For graphics of the pelvic exam and transvaginal ultrasound mentioned above please see this page ( https://www.cancer.gov/types/ovarian/patient/ovarian-screening-pdq#section/_12)  on the NCI website.

If your results show the possibility of ovarian cancer please ask for a referral to see a gynecologic oncologist. Studies have shown that women treated by gynecologic oncologists have better outcomes. See The Relevance of Gynecologic Oncologists to Provide High-Quality of Care to Women with Gynecological Cancer for more information - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712269/ .

Dee
Every day is a Blessing!


Sunday, September 3, 2017

Day 3 - A Month of Teal - There ARE Symptoms!

Yesterday, I wrote that there is no screening test for ovarian cancer. Since that is the case every woman and her loved ones should be aware that there are symptoms of the disease.

Bloating

Feeling Full Quickly

Pelvic Abdominal Pain

Frequent Urination

Less common symptoms include:

Fatigue
Back pain
Menstrual irregularities
Constipation
Pain with intercourse

If these symptoms last for more than two weeks please see your gynecologist.

Source: http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/ovarian/symptoms/

Dee
Every Day is a Blessing! 

Saturday, September 2, 2017

A Month of Teal- Is there a Screening Test for Ovarian Cancer ?

NO !
There is no screening test for ovarian cancer.

You may have heard about the CA-125 blood test. This test is not specific enough to be used on the general population to detect ovarian cancer.

You can learn more about CA-125 by reading this newly updated brochure, CA-125 Levels: Your Guide  by the Foundation for Women's Cancer.

The PAP test does not screen for ovarian cancer - it screens for cervical cancer.

Dee
Every Day is a Blessing!

Friday, September 1, 2017

A Month of Teal - Ovarian and Gyn Cancer Awareness Month

Hello September!

September is Ovarian Cancer Awareness (#OCAM) month as well as Gynecologic Cancer Awareness Month (#GCAM) . Today, September 1st is National Wear Teal* Day. I am sporting some teal toes. What are you wearing that is teal?  

Feel free to share the graphic below, which I created, with your friends on social media. 




Dee
Every Day is a Blessing!
*Teal is the  awareness color for ovarian cancer.

Friday, August 4, 2017

#FF follow the #HIT100

I had heard about the #HIT100 a few years ago. Each summer people in the health care social media community on Twitter are asked to nominate their peers who are active in various aspects of healthcare information technology. Some are entrepreneurs and journalists while others are researchers and physicians and policy makers yet they all share information of value with the community.

Imagine how I felt when a tweet showed up in my notifications that I was choosen along with fellow #gyncsm Twitter Community co-founder/co-moderator Christina Lisazo, as one of  2017's #HIT100. To be named along side of  Colin Hung (@Colin_Hung), Regina Holliday (@ReginaHolliday),   Marie Ennis-O'Connor ( @JBBC), Mandi Bishop (@MandiBPro) and others is a true honor. 

You can find the complete list here
http://www.emrandhipaa.com/emr-and-hipaa/2017/07/28/our-final-2017-hit100-list/


Since today is # Follow Friday I recommend that you take a look at this list and pick a few of these individuals to follow. You won't be sorry.

Dee
Every Day is a Blessing!

Friday, July 28, 2017

XII years

When I attended the Cancer Support Community of Central New Jersey's Wings of Hope event in June, I spent some time at the table for cancer survivors. There is a Japanese tradition that 1000 cranes will bring you luck. So survivors were able to string together origami cranes to celebrate our years of survivorship. I stood that day in a light rain stringing together my cranes.


WINGS OF HOPE 2017 -12 CRANES

Tomorrow (July 29, 2017) will mark the 12th anniversary of waking up from surgery and hearing,"You have Stage 3B Ovarian Cancer."

It is still hard for me to believe it has been that long.  When I was first diagnosed, even though I was told to not read the survival statistics, I did. I wasn't so sure I would make 5 years (30%).

When I recurred in 2008 I thought for sure I would never rid my body of the cancer. Yet, I did, due to the skills of the  amazing surgeons, gynecologic oncologists and nurses at the Rutgers Cancer Institute of New Jersey and the love and support of family and friends and other reasons I don't know. 

I am especially grateful for my husband, my children and their spouses, my grandsons and countless family and friends for their love and support these past twelve years. You have provided me with the best memories anyone could ask for. Thank you all.

Looking forward to blogging about my "cancerversary" for many years to come. 

Dee
Every day is a Blessing! 

Monday, July 24, 2017

That Feeling You Get When You Hear the Word Cancer

The other day, a women in one of the ovarian cancer Facebook groups, asked the group "How did you feel when you heard the words - You have Cancer?".

As I approach my "cancerversary" I thought I would share how I felt when I heard those words.

I had been referred to a Gynecologic Oncologist after I told my gyncecologist at my annual visit about pain in my left abdomen and an MRI showed my ovaries were enlarged. I was just shy of my 50th birthday and I thought at the time perimenopausal. 

Leading up to my gyn onc's recommendation that I have surgery we talked about what could be causing the enlarged ovaries. Yes, she did tell me about the possibility of it being ovarian cancer but at the time I thought if I would get a cancer it would be breast cancer. My sister had been diagnosed with breast cancer in the the late 1980's. At the time I didn't know about the BRCA mutation connection between breast and ovarian cancer or much about ovarian cancer at all. But I did have a family  history of cancer.  My mother, father, aunt, and uncles in addition to my sister had received a cancer diagnosis. So it  made sense that I could have cancer. Yet somehow at the time I thought that this was NOT going to be my diagnosis.  Or maybe I didn't want to think about having to deal with the treatments that would certainly follow my surgery.

When I woke up from surgery and heard the words you have Stage 3 ovarian cancer I said "OK" and then I told my gyn-onc that I didn't want my treatments to disrupt my family's life. I wanted them to continue with their lives - school, hobbies, work. That was the first thing I thought of. Maybe it was the anesthesia that numbed me to what I had just heard. When I got transferred from recovery to a hospital room and my family had all gone home for the night that is when it hit me.

Oh my God, I have CANCER!

I was laying down in bed at the time, still pretty drugged up and not really able to move much at all.  I felt a strange sensation of my legs feeling weak. I don't know if I would have actually collapsed if I had been standing since I have only felt it when I was already sitting or laying down. I was always alone and it was late at night. I felt it when I let my mind wander to that space where I considered that this cancer would kill me. I have described it to others as my Weak in the Knee reaction.

There was so much I didn't want to miss and so many things I needed to do and experience. I wouldn't be there when my children married.I wouldn't see my son graduate college.  I wouldn't meet my grandkids. I wouldn't visit all 50 states.(I had 21 more states to visit at the time.)I'd never get to visit Australia or Europe.  I wouldn't be doing any of this. Then I thought of my family. What would it be like for my husband and children? Emotionally, I was despondent.

While I can remember how I felt, it is hard for me to remember how I was able to recover from the Weak in the Knee feeling or what prompted me to become more hopeful. I know I began using a mantra to stay calm during all those medical scans but I don't recall when I started using it. Maybe the sun came up.  And with the start of a new day, I became hopeful.


If you were diagnosed with cancer, how did you feel? Physically? Emotionally?

I will sign off as I always do, 

Dee
Every Day is a Blessing!

Wednesday, June 28, 2017

Research in Your Backyard - NJ

PhRMA ( the Pharmaceutical Research and Manufacturers of America) released their report on clinical trials in NJ today. Research in Your Backyard: Developing Cures, Creating Jobs, Pharmaceutical Clinical Trials in New Jersey (RIYB)was presented at a Roundtable event co-hosted by the  HealthCare Institute of New Jersey (HINJ)  and We Work for Health NJ (WWFH-NJ) at Rutgers Cancer Institute of New Jersey.  I attended the event and was honored to share my experience with clinical trials with those in attendance. 



Below are highlights from the report presented by Emma Van Hook, Directory of Policy & Research, PhRMA :
  • Since 2004 there have been 4,967 clinical trials completed in NJ. 
  • There were 314 cancer clinical trials during that time period. 
  • 25,127 New Jersey patients participate in clinical trials around the state, generating $617 million in economic growth.
  • The average cost of developing a new drug is ~ 2.6 billion dollars. 
  • Half of the cost of developing drugs ( ~$1.3B) is clinical trials.  
  • The biopharmaceutical industry supported more than 378,000 jobs in NJ.
For more report details please see: http://phrma-docs.phrma.org/files/dmfile/RIYB_New-Jersey_2017.pdf

Dean Paranicas, President and CEO of Healthcare Institute of New Jersey shared information on the biopharmaceutical industry in NJ.
  • New Jersey is home to more than 3000 life sciences companies. 
  • Thirteen of the top 20 research-based biopharmaceutical companies in the world are headquartered or have a significant presence in NJ. 
  • There is a long history of collaboration between local academic and health care institutions in the state.
  • It takes 8-12 years to develop a drug, complete clinical trials and receive FDA approval.
  • 12% of drugs that start the development process are successful.
You can find additional information at http://hinj.org/life-sciences-new-jersey/by-the-numbers/

Additional speakers included Michele Sharr, Director, Oncology/Hematology, Celgene Corporation who spoke on Industry Research in NJ and Shridar Ganesan, M.D., Ph.D., Associate Director for Translational Science and Chief, Molecular Oncology, Rutgers Cancer Institute of New Jerseywho spoke about A View of Academic Research in NJ.



"Clinical trials are beneficial to patients, the economy and science. "- RIYB
I have been blessed with almost 12 years of survivorship and participating in clinical trials has been an important part of the survivorship.

Dee
Every Day is a Blessing!

Thursday, June 22, 2017

Our Way F>>ward - Survey Summary

Between April and May of 2017 a survey was conducted online on behalf of TESARO, Inc. by the Harris Poll. This One Way Forward survey included 254 women living with ovarian cancer and 232 physicians who treat ovarian cancer patients. The survey was developed with input from OCRFA and NOCC.


Here are some highlights from the survey:

  • 53% of the women said their diagnosis had a severe or very severe impact on their lives.                                                           
  • 87% of the women who had experienced a recurrence said the thought of cancer returning was overwhelming 
  • 34% of the health care providers were unsure if or did not feel that they give their ovarian cancer patients all the information they need  about Ovarian Cancer

Most interesting to me was the survey results when it came to communication.

  • 91% of health care providers said they discuss expectations of treatment often or at every visit while 40% of the patients reported they had the discussion.                                                      
  • 69% of health care providers said they discussed recurrence often or at every visit while  38% of the patients said they discussed recurrence often or at every visit.


It appears that we have a ways to go to make sure patients have the information and support we need, when we need it most. 


You may find additional information on the website https://www.ourwayforward-oc.com/

Dee
Every Day is a Blessing! Thank you TESARO for researching the needs of the ovarian cancer community.  

 

Monday, June 5, 2017

#ASCO17 Twitter Highlights

I was not able to attend this year's ASCO Annual Meeting in Chicago so instead I followed the latest oncology news from the meeting via Twitter (#ASCO17).  I appreciate all the attendees who used the #gyncsm hashtag too.

Below find the tweets I found most interesting in the areas of gynecologic cancers, social media and survivorship.

Let's start first with how to read cancer related news:
Patient Reported Outcomes Leads to Improved survival
Impact of HPV vaccinations:

PD-1 Pathways in Gynecologic Cancers: 


Progress in High Grade Serous Ovarian Cancer:

Liquid Biopsy

Parp Inhibitors in Ovarian Cancer:

Resection of Recurrent OC:

ICON6:
"ICON6 is designed to evaluate the safety and efficacy of platinum-based chemotherapy in combination with cediranib in women with platinum-sensitive relapsed ovarian cancer . Cediranib is an oral targeted small molecule inhibitor of a key signalling molecule Vascular Endothelial Growth Factor (VEGF) which is an oral inhibitor of tyrosine kinase (TK) activity and acts through blockade of the TK receptor. Cediranib (AZD2171)" source :http://www.icon6.org/


OC risk reduction w/ BRCA mutation:


BRCA testing - ovarian cancer:


Endometrial Cancer and Genetic Testing:
Homologous Recombination Deficiency:

Germline Testing:

Abstract 1524 http://abstracts.asco.org/199/AbstView_199_187114.html

from this study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3048908/

Immunotherapy:

Screening for OC:


Fallopian Tube /Ovarian Cancer:

Based on this study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3048908/

Social Media:

session description- https://iplanner.asco.org/am2017/#/session/12030
 
Li-Fraumeni Syndrome:

Cost of Care:


I hope I'll get the opportunity to report live from ASCO 2018.

Dee
Every Day is a Blessing!