Tuesday, April 28, 2015

World Ovarian Cancer Day - May 8, 2015

The #gyncsm community is pleased to once again partner with the cause World Ovarian Cancer Day (WOCD).  WOCD will be held this year on May 8, 2015. This year’s theme is “Celebrate Women”.

WOCD, was first held in 2013. It unites organizations from around the world in their efforts to raise awareness of ovarian cancer. The reasons a special day is crucial for the effort include the lack of an early detection test for the disease, symptoms similar to less serious illnesses, and high mortality rates.  

Many of our followers know the stats for the US. An estimated 22,000 women will be diagnosed with ovarian cancer and 14,000 women’s lives lost each year. (http://seer.cancer.gov/statfacts/html/ovary.html

Do you know the global impact?

A quarter of a million women are diagnosed worldwide with ovarian cancer and the disease is responsible for 140,000 deaths each year. While 89% of the women diagnosed with breast cancer survive five years only 45% of women diagnosed with ovarian cancer survive that long. 

What can you do?

Celebrate the women in your life by visiting the www.ovariancancerday.org.  While on the site you can pledge your support of WOCD and share information about the disease and the Day with five of your friends.  Read the personal stories of women from around the world at http://ovariancancerday.org/personal-stories/

Follow WOCD on facebook at https://www.facebook.com/WorldOvarianCancerDay), 

Follow WOCD on Twitter https://twitter.com/OvarianCancerDY and share tweets such as these:

Thanks for joining our efforts to raise awareness of ovarian cancer worldwide and don't forget to wear teal on May 8th.

#gyncsm co-founder

Monday, April 13, 2015

Survivor's Story: GTD and Me – A Story of Diligence, Persistence, and Grace

During the recent tweet chat (#CancerFilm) which took place during the viewing of the documentary the Emperor of All Maladies, Christina conversed with Katie Smith, who was diagnosed with GTD (Gestational Trophoblastic Disease). Gestational trophoblastic disease (GTD) is defined by the National Cancer Institute (NCI) as a group of rare diseases in which abnormal trophoblast cells grow inside the uterus after conception. Trophoblast cells help to connect the embryo to the uterine wall and help to form the placenta. GTD, in most cases, is benign but some cases may be malignant and spread to nearby organs. Please see the NCI site for additional information. We are pleased to have Katie share her story with our community. 

GTD and Me
A Story of Diligence, Persistence, and Grace

I was 28 years old in the winter of 2005.  I had a beautiful one year old son that my husband and I had waited on for almost four years, a new job, and was excited about possibly having more children in the future.  Little did I know my world was about to be turned upside down.

After having my son, my monthly menstrual cycles became quite painful.  But, I just attributed it to getting older.  I also began having a thick discharge, but attributed it to post nasal drip (I have horrible allergies and thought that was the culprit).  In February 2005, I went to the doctor about the painful periods and an ultrasound was performed.  The doctor saw something in my uterus, but stated it was a fibroid.  Traditionally, fibroids can cause intense periods so this made sense.  I was sent home.

The next month, I noticed that my “pregnancy nose” had returned.  You know – that ability to smell someone eating a cheeseburger in the neighboring town.  At that point, I got a little scared.  While I wanted more children, I wasn’t prepared to have one now.  When I took a home pregnancy test, it showed faintly positive.  So, off to my OB/GYN doc I went.

The blood pregnancy test indicated that I had been pregnant but had a miscarriage.  This was devastating!  According to the doctor, my HCG levels were low which indicated that there may still be remnants in the fallopian tubes.  I was given a very light dose of Methotrexate to help flush out any remaining items.  I was again sent home, but was asked to come back in a couple of days for another HCG level check.

But, when I came back a couple of days later, my HCG levels were starting to creep up.  I was asked to come back in two more days for another check.  This went on for about 1 ½ months (including a stronger dose of Methotrexate thrown in there).  For some reason, my levels would not go down.  At this point, my OB/GYN doctor became concerned.  She said, “I really don’t think this is cancer, but I want you to go see my doctor.  He is a Gynecological Oncologist who can rule out cancer and figure out what this is.”

Dr. Don Hall, the Gynecological Oncologist, immediately sent me for an ultrasound.  The Ultrasound Tech stated, “I see a fibroid in there.  That’s it.”  But, Dr. Hall had a feeling that this was more than just a fibroid.  After multiple urine and blood tests, along with a PET scan, the diagnosis was found.  While all of this was going on, I became engrossed in finding out what this could be.  I stumbled across a Gynecological Disease website and found something called “Gestational Trophoblastic Disease”.  The symptoms sounded like the ones I had been experiencing.  Could it really be cancer?

It was a Friday afternoon and I was called in for my results.  With my mother on one side of me and my husband on the other, Dr. Hall delivered the news.  I had a Placental Site Trophoblastic Tumor, which is in the GTD family of cancers.  Less than ½ of 1 percent of women have this type of tumor, and it forms where the placenta attaches to the uterus.  He had already scheduled my hysterectomy for the following Wednesday.  I would be in the hospital for 3 days and on leave for 6 weeks minimum.  I would have a long scar starting from my belly button down, and they may have to remove part of my intestine.  The PET scan had indicated the tumor had protruded through the uterus and was wrapped in the intestine.

Part of me was relieved to have a diagnosis but the other part of me was terrified.  In addition, our insurance was completely maxed out (this was in the day of annual maximum amounts and before the ACA).  We would have to pay for the entire surgery and any other treatments that I would have to go through.  Funny enough-I didn’t worry about the money part.  I just wanted to be alive to see my son grow up.

When Dr. Hall went in to do the surgery, he discovered that the tumor had not protruded but was fully contained in the uterus.  It was removed and sent off for growth rate testing.  If the growth rate was low, no further treatment would be necessary.  If the growth rate was high, I would have to take chemotherapy and radiation.  In addition, it was discovered I had really bad endometriosis and one of my ovaries was removed because it was badly damaged. 

The results of the growth rate testing showed that the tumor was growing at a slow rate.  However, I had to come back every month for HCG testing.  Each time I went it, I would get very anxious.  I had ghost symptoms constantly and stayed panicked.  But, the first year went by with no increase in HCG.  In July 2015, I will be 10 years cancer free. 

There is a very slight chance it could recur as lung cancer, with an even slighter chance of breast cancer occurrence.  But, thanks to God, the concern of my OB/GYN doctor Rebecca Walker and the diligence and persistence of Dr. Hall,  I’ve been able to experience 11 years of bliss with my son. 

What can you take from this story:  Listen to your body.  It will tell you when something is wrong.  If something is wrong, don’t blow it off.  Have it checked out – it might just save your life.

- Katie Smith (@katielizsmith)

Thank you so much Katie for sharing your story with us. 

#gyncsm co-moderator 

Wednesday, April 8, 2015

SGO Recap & ASK the DOC - April 8, 2015 Chat

Twenty-nine participants joined us to discuss the latest research news from the SGO Annual Meeting held in March. Contributing to our discussion were Dr. Don S. Dizon and Dr. Ann Becker-Schutte, two of #gyncsm's healthcare moderators, as well as Dr. William Winter (NED the Band), Dr. Shannon Westin, Dr. Matthew Katz, Dr. Stephanie Blank and Lisa M Guzzardi, RN.

You may find the transcript here and analytics here

Some of the questions and responses during the chat are below:

T1: Pls comment on the study at SGO you found of most note. Was it OC FANG vaccine/ GOG 213 studies/ other?

T2: Which ovarian cancer research results are most exciting to you? Immunotherapy? Bevacizumab? Parp inhibitors?

T3: Pls discuss the implications of Dr Joura’s HPV study on cervical cancer & the Circulating Tumor Cells / Bevacizumab study. 

@gyncsm: studies re: BRCA 1) majority of BRCA carriers don’t have family hx 2) most ovarian cancer patients don’t know BRCA status.  
T4: How will these BRCA studies impact surveillance, ed, treatment?

T5: Now we open the chat for questions from our participants re: news they heard from the SGO mtg.

  • T5: any studies reveal benefit regarding endo ca recvng maint chemo Stage IIIc2 currently NED     A:Nothing yet - we need more maintenance studies for gynecologic cancers
  • T5: Question - any radiation oncology news from SGO?   A:there was very little major research on #radonc this year
  • T5: Does current genetic testing for #OC include mutations like TP53,RAD51D,etc ? Or just BRCA?Is this imp ?   A:#gyncsm panel testing test for many more mutations. should speak w genetic counselor. some is imp, some for future #sgo2015   
  • T5:Thoughts on how should patients/loved ones approach new study findings?   A:Open mindedness and always validate its credibility too

Our next chat will be at 9pm EST on May 13, 2015 . We will be joined by Kelly Mellott (@HelomicsCancer) as we discuss Personalized Medicine Advances for GYN Cancers. 

Patients & caregivers are invited to continue our discussion on the Smart Patients platform at https://www.smartpatients.com/partners/gyncsm.

Co-moderator #gyncsm chat

Resources shared during the chat: 

Highlights from the SGO Mtg

@SGO_org paper on end-points in Clinical trials

Incidental power morcellation of malignancy: a retrospective cohort study. - PubMed - NCBI 

Association of Type and Location of BRCA1 and BRCA2 Mutations With Risk of Breast and Ovarian Cancer 

Advanced Cervical Cancer and Circulating Tumor Cells treated with Bevacizumab

Postmenopausal HRT & use of estradiol plus levonorgestrel IUD is assoc with increased risk of fallopian tube cancer

Additional Resources:

SGO Highlights:

OncLive “overall survival (OS) of nearly 5 months compared with chemotherapy alone for women with platinum-sensitive recurrent ovarian cancer, according to results from the phase III GOG0213: “

Surgeon vs CT results of size of tumors left behind.

Fosbretabulin /Avastin
OXiGENE Announces Presentation of Phase 2 Data Confirming That Addition of Fosbretabulin to Bevacizumab Significantly Increases Progression-Free Survival in Recurrent Ovarian Cancer


IP chemo advantages

Recommendations for the prevention of ovarian cancer : SGO

PARP inhibitor - olaparib (Lynparza)

diagnostic tool- bracaAnalysis

FANG vaccine trial / Immunotherapy

Endometrial Cancer -Cediranib