Friday, September 28, 2012

A Short Break and the End of an Awareness Month

I am taking a short break from my Ovarian Cancer awareness month postings. I am visiting my daughter and her family and enjoying time playing with my grandson. Right now he is napping.
 Isn't he a cutie pie?

Anyway, fall is in the air and the end of Ovarian Cancer month is approaching. This year OC activities have increased throughout the country.There were teal toes,teal shoe laces, teal jewelry, teal buildings, teal walks,teal  dinners,teal  motorcycle rides. Many women were featured in news articles and research about the genetics of ovarian cancer was reported.Thank you to everyone who participated in any way this month to make women aware.

I'll be back in early October . I'll be doing a post on the connections between breast and ovarian cancer and it is not just BRCA.

Enjoy the rest of September.

Every Day is a Blessing!

Sunday, September 23, 2012

OC Awareness #23 - GRACEful Hope, Passionate Advocates

Last night my husband and I had the pleasure of attending the 2nd Annual GRACEful Hope Benefit for Ovarian Cancer Research at the Sport Clube Portugues in Newark, NJ.  Over the past year or so I have followed and shared information on my Facebook page about GRACEful Hope events and was honored when they asked me to attend the Benefit and to tell my story.

Before I talk about the event let me give you some background into GRACEful Hope. The Rocha family lost their wife and mother Grace to ovarian cancer in 2008, while their daughter Erika fought her battle with the same disease. They formed GRACEful Hope in memory of Grace and in support of Erika in 2009 with family and friends coming together to enter walks as a team. In 2011, Erika passed away at the age of 20.  But the family did not stop their efforts, no they continue to raise awareness and funds for research they hope will one day lead to a cure.

I have been to many ovarian cancer events from teas to walks to galas. And I have told my story many times in different venues, on TV, in a room full of women, at a walk and press conference, but last night was different. As we entered the Sport Clube I felt welcomed, at home and part of a large extended family. The event included a large family meal complete with overflowing platters of Portuguese food. The food was absolutely delicious. There was music and dancing. It was a celebration of the lives of Erika and Grace and all that  GRACEful hope had accomplished in the past year. And it was an expression of hope. Hope that the funds raised for the Cancer Institute of NJ would get us closer to finding a cure.

I am always a bit nervous before giving a talk but I had practiced and I knew exactly what I wanted to say about my journey, being in a clinical trial at CINJ and the compassionate care Dr Rodriguez and Gibbon provide. So what happened next surprised me. As I talked about my clinical trial experience and the day I heard "There is no evidence of disease". The room cheered. And I had to pause and compose myself. I know my right hand which was holding the microphone was shaking but I continued talking about my recurrence. I talked about the surgery, treatment, the allergic reaction to carboplatin and how I heard "There is no evidence of disease" and the clapping began again. And I could feel my eyes starting to tear up. And I am sure my voice cracked as ended my speech with "I still have neuropathy in my toes, forget things because of chemo-brain , get anxious waiting for blood tests and scan results but the one thing I know for sure is that with my faith , my family and the doctors at CINJ I can face whatever lies ahead."

What an emotional experience for me. Maybe it was because it was the first time I was telling my story in front of my doctors ( who spoke right before me).Or maybe it was because my husband was in the room. Or I know it sounds corny maybe it was because people who I had never met before showed me so much love and gave me so much hope.

Every Day is a Blessing!

Friday, September 21, 2012

OC Awareness #21 - HIgh Grade Serous subtypes

The article

Profiles of genomic instability in high-grade serous ovarian cancer predict treatment outcome

appeared in a recent issue of Clinical Cancer Research. Researchers at Dana Farber using a process called single nucleotide polymorphism (SNP) arrays were able to examine single units in the genetic code of tumor cells of high grade serous ovarian cancer ( HGSOC) . HGSOC cells have many genetic abnormalities including missing or extra chromosomes and  On examination the HGSOC fell into three groups based on abnormalities or loss of heterozygosity ( LOH). (Heterozygosity is having dissimilar pairs of genes.) One group had a high level of LOH and a loss of chromosome 13. The researchers found that patients in this group were slow to develop resistance to chemotherapy drugs and also were found to have the longest progression free survival.

A good review of the study can be found at

Every Day is a Blessing!

Thursday, September 20, 2012

OC Awareness #20- Estrogen during Menopause and OC

I receive weekly e-mails from OncologyStat which provides abstracts from oncology journals.

Today there was a summary of an article from the August 28, 2012 British Journal of Cancer ( log-in required for the full article)  titled

Ovarian cancer and menopausal hormone therapy in the NIH-AARP diet and health study

The study evaluated the use of estrogen by 92,601 post-menopausal women enrolled in the the National Institutes of Health -AARP Diet and Health Study and the incidence of ovarian cancer ( 426) . The Study concluded that long term  ( 10+ year) use of unopposed estorgen and oestrogen plus progestins was associated with increased risk of oarian cancer.

Every Day is a Blessing!

Wednesday, September 19, 2012

OC Awareness Month #19- This Friday Charmed and N.E.D -the band

I know I've mentioned many different events for ovarian cancer awareness month but here are two more unique ones happening this Friday in NJ. Like shopping and Vera Bradley or Brighton then visit Charmed by Claire's in Cranbury on Friday. Love music and dancing then head over to Englewood and hear N.E.D. play .

Charmed by Claire links with Teal Tea Foundation

Charmed by Claire : Location: 33 North Main Street, Cranbury, NJ 08512 

Date of event: Sep. 21st 2012 Time of event: 10:00 AM-8:00 PM

Charmed by Claire is donating 10% of purchases to the Teal Tea Foundation. Charmed by Claire offers a wide variety of jewelry, handbags, clothing, accessories and many more whimisical gifts. Some of the featured product lines include but are not limited to Brighton, Vera Bradley and PANDORA. Gift certificates are also available for the hard to shop for girl.

For information about The Teal Tea Foundation visit

N.E.D - the Band 
N.E.D. No Evidence of Disease is a group of 6 GYN ONC's from across the USA who have formed a band, recorded all original music and played around the country to raise awareness and money for women's gyn cancers. They are releasing a documentary about the band and women's gyn cancers following personal stories also call NED. They are hosting a night out this friday 9/21 at 8P at Club 201 in Englewood NJ. It is 10 min. from the GW Bridge for any NY's. The cost has been lowered to $50 and includes an open bar, music and dancing, valet and screening of the documentary. They are amazing in their energy and passion for our cause. So if you are in the tristate area come out and meet your fellow survivors, bring your friends and support the band and women's gyn cancers. The # for tickets is 201 894 3725

Every Day is a Blessing!

Tuesday, September 18, 2012

OC awareness month #18 - Lynch Syndrome

While at the ASCO meeting in June I spent some time talking to the Myriad representatives. Myriad is the company that does the genetic testing for gene mutations, deletions and additions. I asked if the test used today is any different from the one they used to test my blood  6 years ago. There response was that they would test for LYNCH SYNDROME.

I knew Lynch syndrome associated with colorectal cancer but I wasn't sure how strong a connection there was between Lynch Syndrome and  ovarian cancer.

"Lynch Syndrome is also known as hereditary non-polyposis colorectal cancer (HNPCC), is a type of inherited cancer of the digestive tract. Lynch syndrome increases a woman's risk of ovarian and uterine cancer. It is caused by mutations in several different genes. Lynch syndrome also increases the risk of colorectal cancer, as well as cancers of thestomachsmall intestineliverbile ducturinary tract, the brain and central nervous system, and possibly breast cancer
Mutations in the MLH1 or MSH2, MSH6 or PMS2 or EPCAM genes  are associated with Lynch Syndrome. Families with Lynch syndrome have two or more members who have colorectal, endometrial , ovarian or other cancer.

For more information about the test for Lynch Syndrome see this page.

Here is some interesting research on the Lynch Syndrome Ovarian Cancer link.

Ovarian cancer linked to Lynch syndrome typically presents as early-onset, non-serous epithelial tumors.

The clinical features of ovarian cancer in hereditary nonpolyposis colorectal cancer.

Every Day is a Blessing!

Monday, September 17, 2012

OC awareness #17- Even 8 year old girls can can have OC

A few years ago at an ovarian cancer walk in Hamilton, NJ,  I met a nine year old girl who had been diagnosed with ovarian cancer. It is rare and tends to happen in the germ cells but it does happen. It sadden me to read about such young children being diagnosed with the disease.

Here is a powerful story about a young lady from Connecticut and her experience with the disease.  Girl 8 Survives Ovarian Cancer.  

Thank you Natalie Cosman's and her parents for allowing her to share her story.

Every Day is a Blessing!

Saturday, September 15, 2012

OC Awareness #15- Remembering and Honoring Women of Teal

Over the past 7 years I have met many women diagnosed with ovarian and other gynecologic cancers . Some I have known for years prior to their diagnosis, some I met at conferences or through volunteer organizations. Some I got to know through talking to their caregivers. Some live in NJ , some in other states and some across the Atlantic in the UK.
Today I remember those women who are no longer with us and honor those who walk beside me on this journey. Thank you ladies for your support , advice , love and hugs through the years.

Mary Jean Tonkovich- NJ
Shirley Harris - NJ, Endometrial
Ann Bugdal -NJ,  Endometrial
Nicole Christison- NJ
Mary Ellen Csehi - NJ, Endometrial
Monica Orloff- NJ
Jeanne Moran - NJ
Jo McGowran - UK
Gaynor Hall- UK
Sarah Feather
Patty Higgins
Janet Rigdon
Jayne Armstrong- CA
Ellen Santaniello- NJ
Courtney Clifford- Ohio
Denise Carter- NJ
Mary Slattery- NJ
Lisa Niebert- NJ
Fran- NJ
Lyn Rossi- NJ
Diane Waller
Gail McNeil- NJ
Sharon Morris- NJ
Cindy Owens- Va
Ann Hall- NJ

Pam F - NJ
Carole F - NJ
Lois M - NJ
Maria C - NJ 

Shari - NJ 
Jean - NJ
Ann- NJ
Karin - NY

Rita Kay - NJ
Betsy- NJ
Barbara- NJ 
Kendal- Ca
Deirdre -NJ
Sue - AL
Karen - NJ
Karen - OR
Andrea -NY
Sandhy - UK

Michelle - Pa
MaryAnne - NJ
Kia - FL
Kimberly- DE
Rachel- UK


( I apologize if I missed anyone.)  
Every Day is a Blessing! I have been blessed to have these women in my life. 

Friday, September 14, 2012

OC Awareness Month #14 - Inside Knowledge...

The CDC ( Centers for Disease Control)  has done an outstanding job this year raising awareness of Women's Cancers during Gynecologic Cancer Awareness Month. They have developed the program Inside Knowledge: Get the Facts About Gynecologic Cancer. The program concentrates on the 5 main gynecologic cancers- ovarian, uterine, cervical, vaginal and vulvar.

I am so happy to see that the spokesperson for the PSA is Jenny Allen. I met Jenny a number of times and she is a great performer ( I Got Sick Then I Got Better), writer, mother and Ovarian Cancer survivor.

I urge you to check out the CDC page which includes

Help spread the word about gynecologic cancers. Thank You. 

Every Day is a Blessing!

OC Awareness # 13 - The Impact of OC

I realized that I did not post a #13 for ovarian cancer awareness month. Here it is.

I love this simple yet affective method of seeing the impact ovarian cancer has on the lives of women in the United States.

Thank you to whyteal (  and NOCC (  of this video. 

Every Day is a Blessing! 

Wednesday, September 12, 2012

OC Awareness #12 - OC Organizations in NJ

Do you know someone with ovarian cancer?  Do you want to help raise awareness, funds for research or provide help for women fighting ovarian cancer? There are a number of organizations in NJ that you can volunteer with or support monetarily.

GRACEful Hope
Kaleidoscope of Hope Foundation
Janice Lopez Ovarian Cancer Foundation 
Mary Mazanec Ovarian Cancer Foundation
NOCC - Northern NJ
NOCC - Delaware Valley
The Teal Tea Foundation
Teal Wings of Hope Foundation 

I have personally worked with many of these organizations or personally know many of the founders / directors.  Each and every one of them has done outstanding work to either raise awareness, donate millions of dollars to research or have supported women who need help with transportation, bill paying , pharmaceuticals etc.You can help those fighting this disease  and do it close to home.

Every Day is a Blessing!

Tuesday, September 11, 2012

OC Awareness #11- Task Force Recommendation

Just yesterday the US Preventative Services Task Force released its recommendation regarding ovarian cancer screening in the general population.

The recommendation is for adult women and does not apply to women who are at risk for the disease ( genetic mutation) or women already diagnosed with the disease.

"The Task force recommends against screening women for the disease. "

This recommendation was made because screening using CA-125 and ultrasound did not have any benefit (reduce mortality)  and if fact those tests could lead to harm (unnecessary surgery) .

The task forced used three large trials( including the Prostate, Lung and  Ovarian Cancer Screening Study) to reach their conclusion . A discussion of the test can be found on the USPSTF website here and the consumer fact sheet ( pdf)  can be found on their website.

Here is a good article to read for a very complete explanation of the studies behind the recommendation.

Every Day is a Blessing!

Monday, September 10, 2012

OC Awareness #10 - Recurrences

I thought I was doing great back in 2008 . And I was . Until I had my 6month CT scan. My CA-125 was 16 up from 11. A number which is well within the range of a normal result. But the scan showed cancer on my spleen and liver. I had recurred two and a half years after finishing my initial treatment . Eighty percent of women diagnosed with late stage ovarian cancer recur.( Source:

When a recurrence occurs within 6 months of finishing treatment the tumor is said to be refractory and the patient is said to be platinum resistant . When a women recurs after 6 months she is said to be platinum sensitive. The term platinum is used because the standard treatment for the initial diagnosis of ovarian cancer usually involves the use of carboplatin or cisplatin which are platinum chemotherapy drugs. If you are platinum sensitive you will be able to use those platinum drugs again. (Source :

I already discussed the standard treatment for a majority of late stage ovarian cancers as surgery and then chemotherapy. There are a number of clinical trials looking at chemotherapy then surgery. This allows the oncologist to shrink the tumors before the surgery. The treatment you may be offered when you recur depends on if you are platinum resistant or sensitive you,  the location of the disease,  as well as the number and size of the lesions.

Options for women who have recurred are:
Chemotherapy drugs
Biologic / immunotherapy
Clinical trials

In my case, I was considered platinum sensitive and I had many options open to me. I could have surgery then chemo( carbo/taxol) , chemo than surgery, or a clinical trial . This time I chose to have the surgery and then chemo. I had my liver resectioned and spleen removed in November of 2008 and finished chemotherapy April 2009. I have been disease free since then. This plan worked for me but another woman in consultation with her doctor might have chosen a different path for treatment.

There are excellent online resources ( NCI, OCNA  for women who have recurred including these brochures:
Ovarian Cancer Resource Guide for Women with Recurrent Disease- NOCC
The Patient Guide to Living with Ovarian Cancer - The Cancer Support Community ( formerly known as The Wellness Community)

Every Day is a Blessing!

Sunday, September 9, 2012

OC Awareness Month #9 - Stages

When I was first diagnosed with ovarian cancer I really didn't know what all those stages meant. Early stage ? Late Stage? Staging gives an idea of how far the disease has spread from the ovary. Not all cancers are staged the same so it is important to know the staging of your particular disease.

Here is a chart of the stages from the National Cancer Institute.
This is staging is also know at FIGO ( International Federation of Gynecologists & Obstetricians)staging
IGrowth limited to the ovaries.
IaGrowth limited to one ovary; no ascites present containing malignant cells. No tumor on the external surface; capsule intact.
IbGrowth limited to both ovaries; no ascites present containing malignant cells. No tumor on the external surfaces; capsules intact.
IcbTumor either stage Ia or Ib, but with tumor on surface of one or both ovaries, or with capsule ruptured, or with ascites present containing malignant cells, or with positive peritoneal washings.
IIGrowth involving one or both ovaries with pelvic extension.
IIaExtension and/or metastases to the uterus and/or tubes.
IIbExtension to other pelvic tissues.
IIcbTumor either stage IIa or IIb, but with tumor on surface of one or both ovaries, or with capsule(s) ruptured, or with ascites present containing malignant cells, or with positive peritoneal washings.
IIITumor involving one or both ovaries with histologically confirmed peritoneal implants outside the pelvis and/or positive regional lymph nodes. Superficial liver metastases equals stage III. Tumor is limited to the true pelvis, but with histologically proven malignant extension to small bowel or omentum.
IIIaTumor grossly limited to the true pelvis, with negative nodes, but with histologically confirmed microscopic seeding of abdominal peritoneal surfaces, or histologic proven extension to small bowel or mesentery.
IIIbTumor of one or both ovaries with histologically confirmed implants, peritoneal metastasis of abdominal peritoneal surfaces, none exceeding 2 cm in diameter; nodes are negative.
IIIcPeritoneal metastasis beyond the pelvis >2 cm in diameter and/or positive regional lymph nodes.
IVGrowth involving one or both ovaries with distant metastases. If pleural effusion is present, there must be positive 

Early stages are I and II, while late stage is III and IV.

After the tissue is biopsied it will also be graded. Grading relates to how abnormal the cells
look.The cells are giving a grade from 1 to 3
Grade 1 - looking more like normal cells
Grade 2 - Somewhere in between
Grade 3 - least normal looking , usually more agressive.

You might hear the terms, well differentiated, moderately differentiated and  poorly differentiated cells used to describe the three grades.

Every Day is a Blessing!

Saturday, September 8, 2012

OC Awareness Month #8 -Treatments

Today I will review the treatment that a women diagnosed with ovarian cancer might receive. Of course every woman is different so your actual treatment might differ.

*A women diagnosed with ovarian cancer should see a  gynecologic oncologist ( gyn-onc) . Research has shown that women who receive surgery and treatment by a gyn-onc have higher survival rates.

There are different treatments offered to women diagnosed with ovarian cancer. Such as :

Surgery :
Hysterectomy- removal of the uterus and sometimes the cervix
Oopherectomy - removal of the ovaries and fallopian tubes
Oomectomey - removal of the oomentum the fatty covering of the abdomen
Lymph node biopsy-removal of lymph nodes which are examined for cancer

Chemotherapy drugs disrupt the multiplication of cancer cells or kills them outright.The chemotherapy may be give IV, intravenously, where the drug is introduced into a vein or IP , intraperitoneal where the drug is introduced into the peritoneal cavity. Women may receive a combination of two drugs.

The most common drugs given to women with OC are carboplatin, cisplatin and paclitaxel. Additional drugs may be found on this NCI site might also receive targeted therapy , drugs or biologics. Targeted therapy will affect cancer cells but leave normal cells alone.

Radiation may be used to kill cancer cells in some cases of OC. The level depends on the type of OC cancer and stage of the disease.

 Source :

Tomorrow the stages of ovarian cancer

Every Day is a Blessing!

Friday, September 7, 2012

OC Awareness Month #7 - Types of Ovarian Cancer

What is ovarian cancer ? Ovarian Cancer forms in the tissue of the ovaries the female reproductive glands. We are still not sure how or why ovarian cancer forms.  (Note:Recent research proposed that ovarian cancer forms in the fallopian tubes. ) But not every ovarian cancer is the same as every other ovarian cancer.  The most common form is Epithelial, then Germ cell and then Sex Cord Stromal. Each of these has subtypes.

Epithelial Ovarian Cancer ( Forms in the tissue covering the ovary)
  • serous
  • mucinous
  • clear cell
  • undifferentiated
  • mixed epithelial
  • endometrioid

Germ Cell Ovarian Cancer ( forms in the egg cells of the ovary)
  • teratoma
  • dysgerminoma
  • yolk sac tumor
  • embryomal
  • choriocarcinoma

Sex Cord Stromal(forms in the sex cord/ ovarian follicles)
  • granulosa cell
  • Sertoli-Leydig

Source:John Hopkins Pathology ( The site offers excellent description of each of these different types and subtypes.

It is important that if you are diagnosed with ovarian cancer you know the type . The type of cancer you have may influence the treatment you have.

More on treatment tomorrow.

Every Day is a Blessing!

Thursday, September 6, 2012

OC Awareness Month #6 - The Numbers

R estimated number of new cases of ovarian cancer in 2012:


The estimated number of deaths due to ovarian cancer in 2012:


National source:

The estimated number of women diagnosed each year in NJ with ovarian cancer:


The estimated number of women who will die in NJ due to ovarian cancer is :


NJ sources

Relative five-year survival rates ( the number of women who live at least  5 years after being diagnosed with ovarian cancer compared to others the same age who do not have cancer)
Stage I  89%
Stage II 66%
Stage III 35%
Stage IV 18%

Source :

There are not as many women diagnosed with ovarian cancer as are diagnosed with  breast cancer but that does not mean we should not advocate to find a cure, to continue to develop a detection/ screening  test and to support research to develop better treatments for this disease.

Every Day is a Blessing

Wednesday, September 5, 2012

OC Awareness Month #5- There are subtle symptoms

With no screening test for ovarian cancer what can a woman do to catch the disease as early as possible?

As ovarian cancer progresses there are subtle symptoms similar to symptoms of gastrointestinal problems but a woman should not ignore them. A woman needs to listen to her body and if the following symptoms happen every day for more than two weeks she should see her doctor- preferably a gynecologist or gynecologic oncologist.

  • Pressure or pain in the abdomen, pelvis, back, or legs
  • A swollen or bloated abdomen
  • Nausea, indigestion, gas, constipation, or diarrhea
  • Feeling very tired all the time
Less common symptoms include:
  • Shortness of breath
  • Feeling the need to urinate often
  • Unusual vaginal bleeding (heavy periods, or bleeding after menopause)

Source: NCI

I experienced pain on my left side and what I thought were symptoms of menopause. I'm glad that I mentioned those symptoms to my gynecologist at my annual visit.  And very happy that she didn't ignore what I told her. She sent me for a transvaginal ultrasound and my path down the road to an ovarian cancer diagnosis began.

You can use this OCNA symptom diary to track persistent symptoms and bring it with you when you visit the doctor.

Every day is a Blessing!

Tuesday, September 4, 2012

OC Awareness Month #4 - Can we screen for OC?

There is NO routine screening test for ovarian cancer.

The PAP test does not detect ovarian cancer. It detects cervical cancer.

There are a currently a number of clinical trials being run to detect the disease early. 
( The only way researchers will be able to develop an early detection screening test is through clinical trials.

Now if the doctor suspects you have ovarian cancer,  based on the symptoms you present,  the doctor may do a pelvic exam, a transvaginal ultrasound or a blood assay test for CA-125. I'll talk about symptoms tomorrow.

Every day is a Blessing!

Monday, September 3, 2012

OC Awareness Month # 3- Decrease your risk by...

Just as we have things that increase our risk of ovarian cancer ,we also have things that  may be protective factors and allow us to reduce our risk of ovarian cancer.

  • Use of oral contraceptive
  • Pregnancy and breastfeeding
  • Bilateral tubal ligation ( close the fallopian tubes) and hysterectomy( removal of the uterus)
  • Prophylactic Oopherectomy (removal of both ovaries even if there is no sign of cancer) 
  • Enroll in a cancer prevention clinical trial ( these studies look at things that people do and if they prevent cancer )


Happy Labor day everyone !
Every Day is a Blessing!

Sunday, September 2, 2012

OC Awareness Month #2- Some women are at a greater risk.

Yesterday, I wrote that all women are at risk ( increased chance of developing a disease) for ovarian cancer. That is true but some women are at a greater risk for the disease.

#2 Women are at a greater risk for ovarian cancer if they :

  • Have a family history of cancer ( BRCA1and BRCA2 gene mutations,Lynch syndrome, hereditary nonpolyposis colorectal cancer)  
  • A personal history of cancer (breast,uterus,colon,rectum) 
  • Age over 55,
  • Never pregnant,
  • Menopausal hormonal treatment ( taking estrogen for more than 10 years)
  • Use of fertility drugs
  • Use of talc 
  • Obesity during the teen years

Just because you have a risk for ovarian cancer does not mean that you will develop the disease.  And women develop the disease without having these risk factors.

Source : NCI
Every Day is a blessing!

Saturday, September 1, 2012

OC Awareness Month #1- Every Woman...

Today,  September 1st begins National Ovarian Cancer Awareness Month.

Every day on this Blog I will post information about ovarian cancer - statistics, risk factors, symptoms, treatments, etc.

#1 Every woman is at risk for ovarian cancer.

Sure different cancers can be found in men and women even breast cancer but it is the gynecologic cancers like ovarian ( uterine, endometrial, vulvar, cervical) that are only found in women. You can be young or old or middle age. You can be caucasian, african american, hispanic, asian. You can be born in the US, Canada, Europe , or Asia. But if you are a woman and you have ovaries or fallopian tubes ( which is being studied as the origin of ovarian cancer) you may develop ovarian cancer.

Every Day is a Blessing!