Blog

When diagnosed I knew I had 2 choices- take the treatments and be on my merry way OR share my story so people could not only learn about ovarian cancer

September 18th, 2017

 

Randalynn

 

January 19, 2017, the day I left my “before cancer” life behind and received the news I had ovarian cancer.  Although I’d prepared myself for the worst, I don’t think you’re ever prepared for that kind of news.  At age 36, I was diagnosed with Stage 1C ovarian cancer, nothing I ever saw coming, hit us all out of left field.

I am one of the 15% found in the early stages and I consider myself very lucky.  Did I know I was sick? No, I did not.   Did I have the normal symptoms? Yes, all but one, BUT I had a million other things going on and they masked themselves as stress related issues due to my personal and work life being a complete mess.  I blamed the weight loss and inability to eat on nerves; the fatigue on having a stale exercise routine, so I was going to change it up, which ended up being a change that would save my life. That’s what makes ovarian cancer so tricky, the symptoms can all be signs of something else.

How did they find it? A CT scan checking my appendix, which they thought had ruptured due to my symptoms and age, instead revealed a melon size cyst on my right ovary. At the time, my OB/GYN thought this was nothing more than a dermoid cyst, I went in for surgery to have it removed and when the “well we’ll  have the results in a day or two” turned into a week later, I knew something was wrong and it was probably more than likely cancer.  Sure enough, it was.

6 rounds of chemo later, I’m still standing and I’m here to break the silence and create awareness about this silent killer.  I’m  a  single mom of 2, now 37 years old, and it’s crazy to me that we don’t have a reliable test in place to screen for ovarian cancer. What’s even more crazy is that the majority of people who’ve asked me how long it had been since I’d had an annual exam- ovarian cancer cannot be detected this way -the confused looks on their faces still run through my mind.

When diagnosed I knew I had 2 choices- take the treatments and be on my merry way OR share my story so people could not only learn about ovarian cancer, but see what a cancer patient actually goes through during this process of diagnosis, treatment, tests and life after treatment.  I selected option two, sharing my story to help other women and spread the word about this awful disease.

With Ovarian Cancer Awareness Month upon us I’ve set a new goal for myself  selling hats (which are FANTASTIC  soft and comfortable if you’ve lost your hair)  in order to raise funds for research, education and care packages.  How many, you might ask — a few — My goal is simple, selling 22,440 hats in 2017, representing the number of anticipated women who will be diagnosed this year.  Everyone needs a push goal, right??? I have one as well, an additional 14,080 honoring those who will lose their battle this year as well.

Potentially we’re looking at $438,000. Why am I doing this? Simple, I’m one of the lucky ones -I’m one of the 15%. I knew going in “cured” is a word they felt strongly I am going to be able to use, “NED” would follow after treatment stopped and because of all of that, I am choosing to do what I can in order to change the statistics in order for more women to be able to say the same. My hope is with your help we’ll be able to put 36,520 teal ribbon hats on melons across the country and more people will know about ovarian cancer because someone will ask “what’s the teal ribbon for?” and whomever is sporting the hat will be able to say why they are wearing the hat, to create awareness about ovarian cancer.

For more information on me and the fundraising efforts, please visit www.kickovariancacner.com.  The week of September 18th, all funds raised from hat sales will be going exclusively to the Sandy Rollman Ovarian Cancer Foundation.

 

 

 

 

 

Learn more about the incredible journey that has brought us here!

September 15th, 2017

Posted:09/15/2017

Sandy web with writing© Tessa Marie Imagesss0265

The Sandy Rollman Ovarian Cancer Foundation (SROCF) humbly began 16 years ago, on a living room floor, with the goal to give women a fighting chance against ovarian cancer. At the heart of the foundation is Sandy Rollman, a remarkable woman who lost her battle to ovarian cancer in 2000 at far too young an age. Sandy’s oncology nurse, Robin Cohen, and sister, Adriana Way, first came together to fight for her when she couldn’t fight for herself any longer. They created the Sandy Rollman Ovarian Cancer Foundation in her memory while trying to prevent other women from having to endure the same pain as she did. When first trying to connect Sandy with another survivor, Robin discovered how few resources and support services there were available to women with the disease. From inception, the SROCF set up a monthly meeting to make sure that all women with ovarian cancer had a place for support and to connect with other survivors. Robin says that even at their first meeting a woman admitted “I thought I was the only one.” The Sandy Rollman Ovarian Cancer Foundation works tirelessly to ensure that no woman with ovarian cancer ever feels alone. These women know that we’ll be there with them, no matter what.

“We knew that if we were going to make progress against this disease, we needed to do more than build an organization. We needed to build a Movement. Building a movement was tough but exciting. We built it by people working together. Watching it grow and seeing the impact of our work has been incredible. People drive hope from it and from us.”

Today, the Sandy Rollman Ovarian Cancer Foundation works to unite the community together to promote awareness of ovarian cancer through education about the disease, research funding, and advocacy. The organization also provides programs to support their mission of awareness, advocacy, and support. The With a Little Help From Her Friends Support Program connects a newly diagnosed woman with a survivor who is comparable in age and diagnosis. The mentors provide one-on-one support through phone calls and in person meetings, ensuring that every ovarian cancer patient receives the support they need and deserve. In fact, many of the women then come back and act as mentors to newly diagnosed women. The organization will launch a new survivorship program “Survive & Thrive” this month.

Every year, through donations and special events, the Sandy Rollman Ovarian Cancer Foundation funds research to find a cure for ovarian cancer, a screening test for early detection, breakthrough treatments and improve the quality of life for those living with ovarian cancer. This year, the SROCF reached an incredible landmark-  granting over $3.7 million dollars to fund research! In 2015, the SROCF embarked on their most ambitious project to date; committing half a million dollars to help fund the Stand Up to Cancer Ovarian Cancer Dream Team. The Dream Team focuses on treatments for ovarian cancer patients today and prevention and early detection of the disease. “This research grant “is a big step, but an exciting one” for the impact it will make on ovarian cancer prevention and early detection. The commitment to research funding and the support they give to patients and families are what we are most proud of, “that even in the midst of all the sadness surrounding the disease, in some small way we’ve played a role in someone’s survival.”

Since coming together on just a living room floor, the Sandy Rollman Ovarian Cancer Foundation has grown into a well-respected organization dedicated to funding cutting edge research and educating the public about the disease, all while supporting women diagnosed with ovarian cancer and ensuring no woman ever feels alone. What started with two people and one idea has grown into a movement because of people working together and supporting each other. Please join us!

I am that one in 75

September 5th, 2017

Becky Blog

September 7, 2017

My name is Becky and I’m 40 years old. I am that one in 75 women who will be diagnosed this year with ovarian cancer. I am a survivor. 

I started noticing in October of 2016 that I was having GI symptoms. I was having an upset stomach after a big meal and an increased in acid reflux. I thought my gallbladder was acting up and needed to be removed. I am very active and recently lost a lot of weight through diet and exercise. I thought that I was unable to tolerate certain foods due to a change in my eating habits. Starting in November, I was having minimal amount of vaginal spotting that would come and go. I also ran a half marathon in Disney World and had a lot of GI upset that week resulting in eating very little. I made an appointment with my OB/GYN for an evaluation. At the office, we talked about my symptoms and it was the thought that I messed up my cycle because of the weight loss. My doctor recommended putting me on birth control to control the bleeding. During an internal exam, she recommended a pelvic ultrasound just to make sure it wasn’t anything else. On December 30th, 2016, I had a pelvic ultrasound and afterwards, the doctor escorted me into her office to review the results. My OB/GYN doctor told me that I had a large cyst that needed to be removed with surgery. I was in complete shock. She assured me that it looked like a mucous cyst and was most likely benign. I was told I was “too young” for cancer and not to worry. She scheduled an MRI to look at the cyst more clearly and drew a CA125. My CA125 came back at 70. On December 5, 2017, I had a MRI. I received a phone call two hours after my MRI stating that the results were concerning and that they scheduled an appointment with a GYN oncologist the following day.  The following day, I met with the Gyn Oncologist.  After an exam and going over the MRI, the Dr.  stated that she wasn’t sure if the large mass was cancerous or not. Regardless, it would need to be removed. We went over every option in the case that mass was malignant. On January 30th, I underwent surgery not knowing if I had cancer or not. When I awoke from anesthesia, I turned to my mom to ask if I had cancer. But in my heart, I already knew the answer. I was diagnosed with stage 1c endometriod adenocarcinoma of the right ovary. The surgical team removed the mass, both ovaries, omentum, appendix and lymph nodes. The Dr. also performed a D&C on my uterus. The cancer was contained in my right ovary, but it crumbled during surgery. I was informed by the team that I would need to receive 6 rounds of chemo because of that. As I recovered from surgery, I prepared to start chemo. I had a port placed on March 3rd and started my first round of carboplatin and taxol on March 5th. Because of the taxol, I started losing my hair and was on disability from work due to my position as a nurse and a high risk of infection. Even with so much stress and loss, I never felt stronger. I was determined to beat cancer and get back to my new normal. On June 28th, I finished my last round of chemo and rang the victory bell. It was such an emotional day to realize how far I have come from first being diagnosed. While I recover from surgery and head back to work, I am starting a new fight. That fight is to increase awareness in this disease. Cancer does not discriminate. Ovarian cancer affects all ages and races. I learned so much from this journey and have met so many incredible people. Most importantly, I learned that I am truly a survivor. 

You Have the Power Inside of You

March 15th, 2017

March 15, 2017

She is Fierce featured the story of our Founder, Robin Cohen. Read it here.

 

You-Have-the-Power-Inside-of-You-

 

A Physician Speaks about Immunotherapy

December 29th, 2015

January 6, 2016

Jeffrey Fisher, MD, a pathologist and principal at friendMD, speaks about the choices he and his wife, Liz, made regarding her treatment. Liz was diagnosed with stage IIIC ovarian cancer in 2011.

Q: How did you learn about immunotherapy options?

Dr. Fisher: When my wife had a recurrence 19 months after finishing her first round of chemotherapy, I did research and discovered other options besides another round of chemo. I was aware of immunotherapy becoming an attractive option to treat ovarian and other cancers and discovered the autologous vaccine clinical trial at University of Pennsylvania.

Although my wife was ultimately excluded from that trial because of post-op complications, we eventually found our way to an integrative oncology practice overseas where the vaccine was prepared from her stored tumor tissue.

Q: Her tumor tissue had been previously stored at the time of her surgery?

Dr. Fisher: Yes, cancer treatment for all tumor types is evolving rapidly, and many of the newer treatments will require viably stored tumor, so it would be foolish to NOT store a tumor. Even though some hospitals may say they store it, they do not do so viably nor do they allow the patient to have access to it – preservation and storage needs to be done with a company that specializes in this technology.

Q: Many patients say their oncologists don’t discuss tumor storage with them. Is this common?

Dr. Fisher: Of course their physicians SHOULD initiate the discussion but, if not, it is incumbent upon the patient to bring up the topic. If their physician discourages them, they should probe as to why.  The only possible reason would be cost but that is up to the patient to decide, not the physician. My wife would not have had this opportunity if we had not stored her tumor tissue.

Q: Are cancer vaccines risky?

Dr. Fisher: All treatments should be evaluated on a risk/benefit ratio. There is essentially zero risk in administering an autologous vaccine, so there can be only benefit.

Q: How is Liz doing now?

Dr. Fisher:  She is doing great!—no side effects, either local or systemic. The oncologist said that changes in her MRI and CA-125 are consistent with a positive immune response.  We couldn’t be more thrilled!

For more information, Dr. Fisher can be reached through his website at www.friendMD.net.

How to Apply for Disability Benefits with Ovarian Cancer

May 5th, 2015

Social Security disability benefits are resources provided by the Social Security Administration to financially help anyone with a serious disease or condition that prevents them from working. All cancer, including ovarian cancer, can potentially qualify for disability benefits.

Any woman with later stage ovarian cancer automatically meets the Social Security Administration’s (SSA) medical eligibility requirements for disability benefits. Ovarian cancer in its early stages can be more difficult to establish as a long-term disability, but it is still possible under some circumstances to qualify for SSD.

Medically Qualifying with Ovarian Cancer

The SSA maintains listings of impairments in its Blue Book manual. The listing for ovarian cancer appears in Section 13.23 and covers all forms of ovarian cancer, including germ-cell, sarcoma, and carcinoma.

Germ-cell ovarian cancer qualifies under this listing only if it has recurred after initial treatment. With a carcinoma or sarcoma form however, your medical records must show:

  • Tumors that go beyond the pelvis, like those that have adhered to the bowels or peritoneal tissues

OR

  • Metastatic tumors in the lymph nodes, regional or distant

OR

  • Recurrence after initial treatment.

If your cancer meets one of these requirements, then you “automatically” medically qualify for benefits, though you will still need to complete the full application process and the SSA will need to see thorough medical records documenting your condition. Specifically, these records include:

  • A formal diagnosis, including onset, treatments, and prognosis
  • Pathology and operative reports, if applicable
  • Imaging scans, blood work, and other diagnostic reports
  • A statement from your physician about your cancer, including clinical observations and a summary of your overall condition
  • Treatment side effects and any residual impairments from your illness or your treatments

If your cancer is advanced and inoperable, then your application for benefits will be reviewed more quickly as part of the SSA’s Compassionate Allowances (CAL) program. CAL expedites the process, allowing you to potentially get benefits sooner.

Ovarian cancer that is in the early stages, has not spread, and has responded to treatment does not meet the listing in the Blue Book but you may still be able to get benefits. It will be more difficult to prove disability though and you will need to go through a “residual functional capacity” (RFC).

RFC is a process by which the SSA looks at your everyday abilities to determine if you are so impaired by your illness, treatments, and residual effects that you’re unable to maintain gainful employment. Your medical records play a big part in the RFC analysis, but the SSA will also require you to fill out a “functional report” form. Your physician should also complete a similar report.

These documents allow you and your doctor to explain how your everyday abilities are affected by your medical condition. If the SSA finds you are unable to work in any job, then you can receive benefits despite not meeting the Blue Book listing for ovarian cancer.

Applying for Benefits

There are two types of disability benefits for which you may qualify with ovarian cancer:

AND

 

An appointment is necessary to apply at the local SSA office and can be scheduled by calling 1-800-772-1213, but online applications can be completed at any time.

 

Deanna Power

Community Outreach Manager

Social Security Disability Help

The Season of Giving

November 14th, 2014

slide7

The Sandy Rollman Ovarian Cancer Foundation is committed to working towards a world without ovarian cancer, and asks that in the spirit of giving this holiday season, you help make this vision a reality.

You’ve heard of Black Friday and Cyber Monday. December 2  is #GivingTuesday! It’s also the date SROCF was founded. The Sandy Rollman Ovarian Cancer Foundation is one of the partnering charities. Please consider making a 100% tax-deductible donation on #GivingTuesday. Make your secure online donation here or Text the word Teal to 20222 to make a $10 donation. Now, through #GivingTuesday, don’t forget to post your messages to social media using the #loveistrongerthancancer!

There are many ways to donate to us during the holiday season through your everyday activities that is at no additional cost to you!

If you’re an online shopper:

Search the internet with goodsearch.com, choose the Sandy Rollman Ovarian Cancer Foundation as your favorite charity and the search engine will make a donation back to us. 

Begin all of your shopping at Goodshop.com. More than 700 of the nation’s top internet retailers have teamed up with GoodShop and will donate a percent of each purchase back to our charity. Add GoodShop to your home browser to make access even easier.

Are you an amazon shopper? Shop at Amazonsmile and Amazon will donate 0.5% of the price of your purchases to the Sandy Rollman Ovarian Cancer Foundation.

Bid on two tickets to the Sold Out Jingle Ball Concert and a chance to meet Shawn Mendes! This is an exciting and fun way to help us. Bid now at https://www.charitybuzz.com/support/1747

 

 

Bid on a chance to spend 5 nights in classically romantic accommodations for 6 people at Los Establos Boutique Inn in Panama. Start bidding at https://www.charitybuzz.com/catalog_items/689001

Buy the gift that really counts and shop the Teal Corner today!

Register for the Sandy Sprint Superhero Race and give the gift of registration to a friend too! Register online here

Don’t forget to “Like” us on facebook(www.facebook.com/sandyovarian), follow us on Twitter @srocf, connect with us on Linkedin and follow us on Instagram(http://instagram.com/srocf).

Join us in fighting this disease so that all of our mothers, wives, sisters, daughters and granddaughters can live in a world free of ovarian cancer.

 

Welcome to Our Blog

November 27th, 2013
×