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


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. 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:

It is recommended by the Society of Gynecologic Oncology that all women diagnosed with ovarian cancer have genetic testing. (
The SGO also has available a Genetics Toolkit 2016  online.

Additional information on HBOC may be found on the FORCE website 

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

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 
Cancer Care

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

or print out this brochure from ASTRO. 

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

or the NCCN guideline page 

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. 

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

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> 

**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.

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. 

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 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

    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:

    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.(

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:
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.

Every Day is a Blessing!


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
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.


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 page.

 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
yolk sac tumor
embryomal carcinoma
Sex Cord Stromal forms in the sex cord/ ovarian follicles
granulosa cell
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 

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
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


This information is taken from the CDC ( websites (

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.

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 ( )
  • 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:

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 (  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 - .

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.


Feeling Full Quickly

Pelvic Abdominal Pain

Frequent Urination

Less common symptoms include:

Back pain
Menstrual irregularities
Pain with intercourse

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


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.

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. 

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

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.

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.


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. 

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, 

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:

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

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.

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

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 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 :

OC risk reduction w/ BRCA mutation:

BRCA testing - ovarian cancer:

Endometrial Cancer and Genetic Testing:
Homologous Recombination Deficiency:

Germline Testing:

Abstract 1524

from this study


Screening for OC:

Fallopian Tube /Ovarian Cancer:

Based on this study:

Social Media:

session description-
Li-Fraumeni Syndrome:

Cost of Care:

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

Every Day is a Blessing!

Wednesday, May 31, 2017

When News Triggers That Old Fear

By now most people have heard that Olivia Newton-John's breast cancer has returned this time in her lower back. (USA Today) It has been 25 years since her initial diagnosis. Breast cancer metastasizes and it is not unusual for women to be disease free for five, ten, fifteen years and have the disease return. There is a organization METAvivor whose focus is to do just that and to support women who are living with disease. 

Did you know that Ovarian Cancer can recur - months and years later? I know women who have dealt with single recurrences and some with multiple recurrences. Some women are in constant treatment just like those with metastatic breast cancer.

Yes, there are new drugs being developed to treat the recurrences and target specific mutations but just like with breast cancer, more research is needed. But being diagnosed with a disease that can recur at any time brings along with it other issues to deal with too.

My first reaction to hearing about Olivia Newton-John was sadness and then the fear took hold. I could feel that strange tightening in the pit of my stomach. And then my thoughts took off to a place that I try very hard to keep in check. Damn. I could recur at any time.

I've been really tired lately.  ( Could be my allergies.)
My lower back started hurting a few days ago. ( Could be bending to pick up my grandsons.)
My digestive system still isn't right since the stomach bug I had two weeks ago. ( Could just be it is taking that long to clear up.) 

I take a deep breath. And then another and finally slowly get hold of myself.  I know that my gyn onc will see me in a few months for my regular check-up. I know that if these symptoms continue for two more weeks I can always give her a call and see her early. Alright I have a plan. Once I have a plan I am good.

Being disease free is not being worry free. That is a side effect that can come on at any time.
How do you handle your fears of recurrence?  

Every Day is a Blessing!

Friday, May 26, 2017

2017 Annual Retreat on Cancer Research Public Forum Highlights

I was pleased to have the opportunity to attend yesterday's Public Forum segment of the 2017 Annual Retreat on Cancer Research in New Jersey presented by the Rutgers Cancer Institute of New Jersey (RCINJ) and the New Jersey Commission on Cancer Research. This years Forum topic was Precision Medicine. The Event took place at the Rutgers College Avenue Student Center.

After an introduction and welcome by Shridar Ganesan, MD, PhD (RCINJ),  Dr. Kim Hershfield spoke on The Promise and Practice of Precision Oncology. After a short review of the structure of the cell and DNA, she described how oncogenes and tumor suppressor genes work. In the past, treatments were based on the organ where the cancer was found and the cancer's histology. Today knowledge of a tumor's gene mutations can lead to the use of a targeted therapy. Knowledge of the mutations that can cause a cancer has increased in the past few years and researchers like those at RCINJ are working to understand the impact of those mutations and develop targeted therapies for them.

Another avenue of recent study is the use of a  liquid biopsy. With a liquid biopsy, a blood sample is examined for circulating DNA from a cancer tumor.

As Dr. Hershfield mentioned Precision Medicine is at the "toddler" stage.  But every day researchers are looking to develop new treatments, test combination therapies, understand and reduce side effects, understand pathways, all with the goal of providing the best treatments for cancer patients.

The second speaker was Hetal Vig, MS a genetics counselor from RCINJ who spoke on Capturing the Spectrum of Hereditary Cancers: A Moving Target in the Setting of Targeted Therapy. Cancer may develop due to mutations that are germline ( hereditary) or sporadic. When examining a patient's family history it is important that both the maternal and paternal sides of the family are examined.

As an example, Ms Vig mentioned how BRCA mutations increase a person's risk for breast, ovarian and pancreatic cancers. Every person has two of each gene. When you have a germline mutation the mutation comes from the egg or sperm. If you are born with a BRCA mutation in one gene and over time you should develop a BRCA mutation in the second gene you can develop cancer. When you have a sporadic cancer  you are born with no mutations in either gene but over time for some reason both your genes develop a BRCA mutation which can lead to cancer. So there are less steps to go through when you start out with a hereditary mutation to develop cancer. And it also explains why most sporadic cancers develop later in life since it takes more time for the mutations to occur.

Ms Vig also talked about incidental findings on genetic testing results. A framework needs to be developed regarding how to share those findings with patients. Interpreting the complex genetic test results many patients receive should be done by a trained genetic counselor.  (I agree 100%.)

The final speaker of the morning, Dr Eric Singer , RCINJ spoke on Ethical Issues in Precision Oncology. Dr Singer's talk began with a discussion of clinical trial design and informed consent. Do patients really know that the trial they are taking part in is for research and may not offer them any benefit? Dr Singer also mentioned incidental findings and how those findings should be shared with patients. Dr Singer mentioned that is is important that health care providers protect patients from misinformation.

He also stressed the need for oncologists to know their patient's goals. Part of the discussion could include the cost the patient will have to bear when taking new expensive targeted therapies.The patient / health care provider discussion could include: Will the treatment extend survival? Will the treatment have toxic side effects? What patient reported outcomes have other patients provided? Is the decision to use the treatment performance-based or value-based?

I was happy to see in each of the presentations the patient being central to the treatment decision. 

After the Forum I took some time to view the posters outside the Multi-purpose room. Here is one of particular interest to those with ovarian cancer.

Impact of Body Mass Index on Ovarian Cancer Survival Varies by Stage
Elisa Banderas et al
This study looked at the impact of obesity on ovarian cancer survival
It included over 1100 women with epithelial ovarian cancer diagnosed between 2000-2013 at Kaiser Permanente Northern California. "There was no evidence of an association between BMI( body mass index) on overall or ovarian cancer-specific survival" but they found a strong association by stage.
Conclusion: "Associations of obesity with ovarian cancer survival differ by stage, with decreased survival among those with localized disease and increased survival among those with late-stage disease. "

I look forward to next year's Retreat.

Every Day is a Blessing! Thankful for the doctors, researchers and staff throughout the state of NJ who are striving to understand cancer and make their patient's lives better. 

Tuesday, May 9, 2017

Public Forum - 2017 Annual Retreat on Cancer Research in NJ

The Annual Retreat on Cancer Research in New Jersey is hosted by the Rutgers Cancer Institute of NJ and the New Jersey Commission on Cancer Research. The event includes poster sessions and mini-symposium on research by expert NJ researchers.

The day also includes a Public Forum. I have been lucky to have attended a few of the public sessions over the past few years. Last year's public forum topic was Survivorship. This year, the topic is Precision Medicine.

The topics of discussion will be:
The Promise and Practice of Precision Oncology
Capturing the Spectrum of Hereditary Cancers: A Moving Target in the Setting of Targeted Therapy
Ethical Issues in Precision Oncology.

This years event will take place on May 25, 2017  (8:30-10:00 am) at the Rutgers College Avenue Student Center.

Registration is free.
Please register on the following website:

I've already registered for the event. How many of my fellow advocates and survivors will join me?

 See you on the 25th!

Every Day is a Blessing!

Wednesday, April 12, 2017

Speaking Out About NIH Budget Cuts

I was invited by Rutgers Cancer Institute of New Jersey to speak at the press conference Senator Bob Menendez  was holding after he toured the Cancer Center.  The press conference highlighted the impact cutting the National Institutes of Health budget by 18% would have on researchers, oncologists and patients.

Here are the main points I made during the speech.

I am here today because of cancer research funded by the National Institutes of Health. The successful treatment of my cancer at the Rutgers Cancer Institute of New Jersey has been key to my survival. I was first diagnosed with stage three ovarian cancer in 2005, one of over 700 women diagnosed that year in NJ. After my surgery, I took part in a clinical research trial and after nine chemotherapy cycles, I was told I was disease free. When the tumor returned in 2008 I had surgery, 6 more rounds of chemotherapy and was once again disease free. The treatments I underwent were available to me because of research supported by the NIH.

In the almost 12 years since my diagnosis I have seen major developments in treating cancers like mine – all due to research funded by the federal government.

In 2006, a study was released that said intra peritoneal chemotherapy offered a survival benefit for women with ovarian cancer. We know this because of NIH funded research.
In 2011, the Cancer Genome Atlas, a project funded by the NIH, identified new mutations linked to ovarian cancer. This knowledge has led to new treatment strategies. We know this because of NIH funded research.

We saw the FDA approve a number of new therapies that specifically target ovarian cancer, reducing toxicity and maximizing anti-cancer efficacy.
We have these treatments because of NIH funded research.

Today work continues to develop immunotherapies to treat ovarian cancer.
We have these new developments because of NIH funded research. 
Progress is being made and now is not the time to reduce NIH funding.

A proposed 18% reduction in funding would stagnate key research and reduce the number of investigators trying to understand the causes of the disease and developing cures for many types of cancer. This in turn will impact the lives of many residents in NJ who have been or will be diagnosed with the disease in the future. 

As a Board member of the local Kaleidoscope of Hope Ovarian Cancer Foundation I have seen the impact grants can make in the career development of young cancer investigators. Many researchers supported by KOH have gone on to receive grant awards from the NIH. The Federal government’s support of cancer researchers, especially young investigators who wish to study rare cancers, is very important to me and other women who may develop gynecologic cancers in the future.

Cancer is not partisan, it does not care what religion you are, what the color of your skin is, what your age or sexual preference is. The only way we as a country will learn how to reduce our risk for disease, find better treatments, find a cure and  support survivors is through cancer research funded by the National Institutes of Health.  Thank you.

Every Day is a Blessing!