Signed, "Tealed," Delivered and How You Can Help in Less Than Two Minutes

By Seana Roubinek | Jul 16, 2014
Ovarian Cancer.  It Whispers.

 

In 2006, I learned that I carry the BRCA1 gene mutation which puts me at a higher risk for both breast and ovarian cancers (same mutation that Angelina Jolie has). Nearly every woman on both sides of my family has had breast cancer twice so this is the cancer that I thought I might get one day.  Since there are good screening tools for breast cancer, I wanted to prevent ovarian cancer and at this time, the only option to significantly reduce the risk is preventive surgery.  In September 2011, I had a prophylactic oophorectomy – a surgery to remove the ovaries and fallopian tubes in an effort to prevent ovarian cancer as much as possible – but instead of being a preventative measure, I learned that I had late stage ovarian cancer. I had cancer and I didn’t even know what the awareness color was because I was all about the pink beforehand due to my family history. I quickly learned that TEAL is the color of awareness for ovarian cancer and that it has several acronyms including Take Early Action and Live as well as Tell Every Amazing Lady about ovarian cancer.

Ovarian cancer symptoms are vague. I had none of the known “BEAT” symptoms – Bloating, Eating and feeling full quickly, Abdominal pain, and Trouble urinating or with the bowels. There are other symptoms including low back pain and fatigue.  My only symptom was chronic fatigue which was new and different for me and, in hindsight, was definitely my indication that cancer was looming.  I had numerous thyroid tests and was told to get more sleep by my doctors because I was “too young” to have ovarian cancer even though I have a genetic predisposition for it. WRONG!!!  ANY female, regardless of age, is a potential ovarian cancer patient.

The problem is that there is no early detection test for ovarian cancer and it is the deadliest of all gynecological cancers. It cannot be detected by a PAP smear (that is for cervical cancer only) and its symptoms can mimic other gastro issues such as Irritable Bowel Syndrome.  We need research and education for both women and the medical community to be aware of the signs and symptoms of ovarian cancer because mortality rates have not changed in the last 40 years.  In fact, statistics say that I will not live to see my teenager graduate high school.  However, if the cancer is caught early, survival rates are 90%.  Sadly, ovarian cancer is rarely detected early.  Most cases are detected when it has spread and that is exactly what happened to me.   Only 35% of women diagnosed at this point will survive five years.

After learning that I had cancer, I had traditional chemotherapy that included an additional experimental drug.  This put me into remission for just over two years.  I recently learned that the ovarian cancer is back and I desperately want to see my teenage son’s high school and college graduations so I’m going to keep fighting the beast that is ovarian cancer. I will once again begin another chemotherapy regimen and I am blessed to have many supportive people around me who have offered their help.

Here is what EVERYONE can do to help and it will take less than two minutes:

  • We need funding for ovarian cancer research, education, an early detection test, and better quality of life for current treatments.
  • I have been to Washington DC a few times in the past few years to ask our Maine legislators for funding for ovarian cancer research and awareness.  However, we just don’t have the numbers of ladies to physically go to Capitol Hill because women are too ill to travel or are no longer with us.
  • Please write to your legislators NOW (see the link below with an already composed email) before they recess for August and tell them that ovarian cancer research and education is important to you.
  • Follow the link below and enter your zip code. The email is already written but you can alter it to tailor your own personal message.  Cancer is not a partisan issue and all cancer research benefits all cancers in some way.
  • In addition, Maine Senator Susan Collins sits on the Appropriations Committee.  Please also ask her to support the Department of Defense funding of $20 million for the Ovarian Cancer Research Program which does innovative research.  (Breast cancer has made huge strides due to its much larger Department of Defense funding and we need this for ovarian cancer research.)  The Appropriations Committee is marking up the budget this week so please send your emails!!!

No woman is too young to get ovarian cancer - 3-yr old girls, teens, moms, and grandmas are all potential cancer patients. If you are a woman, know a woman, are a mom, daughter, niece, grandma, or great-grandma, please help by sending your message stating that research and education for this insidious disease with dismal survival statistics is important to you.

Thank you for your support and in September, let’s show our TEAL in creative ways to help raise awareness of ovarian cancer!

Link to send your message to Washington DC.

Seana Roubinek has a varied background including working for the world's largest airline and two different properties of a 5-star hotel chain.  While working for the hotel, she caught the "culinary bug" so she went to culinary school in New England. She graduated with honors and worked as a baker in several places. "Life" happened and she found herself needing a job with weekends off which meant seeking a total career change. She found employment with a web-based medical partnership company.  She loves her new career and still gets to donate her culinary skills to her true passion - helping to feed people in the community.  She resides in the midcoast with her son and a menagerie of adopted animals from the local animal shelter.

Comments (4)
Posted by: Maggie Trout | Jul 18, 2014 23:37

First: Good health and long life to you.  It is most unfortunate that more people have not joined you to lobby for funding and increased public education.  The question is always whether there is more profit to be made from illness than in finding remedies to it.  In reading the ovarian cancer website, it appeared that funds go to support lobbying efforts.  It is difficult enough to deal with diagnosis and treatment let alone taking on the government, and a sign of great conviction and concern for all.  I won't hesitate to add that your voice is stronger than any colored nailpolish - and much better for your health - as evidenced by your writing this important article and bringing attention to the need for substantial funding for research.

 

Unfortunately, cause marketing is a huge business, and in the face of overwhelming disease, and death, the sense of powerlessness leads many to, understandably, purchase items that purpotedly support research.  I only urge sending money directly to research organizations instead of buying things.

 

As is quite clear in your story, there was nothing to indicate that you had ovarian cancer, so symptom alerts are not typical, making it all the more a frightening worry.  Let there be a part 2 of your education campaign and print the cards here.  I don't know how many women think ovarian cancer is a grandmother's disease, but my first awareness of it was the publicity surrounding Gilda Radner.  And then, Madeline Kahn.  Some facts regarding Maine:

 

I'm not concerned with money staying in Maine.  It needs to go where it is needed.  Here is a full list of funding, though from 2012, from Defense funds: Even the greater-funding projects are seriously underfunded.  (And compare what certain 'charities' take in compared to the money showing up in this list).  http://fundedresearch.cancer.gov/nciportfolio/search/funded;jsessionid=7F66528CB67DDEE2511FC800E03CA582?action=full&fy=PUB2012&type=site

 

Early detection for breast cancer comes with a multitude of problems when systems are not in place, and they often aren't, to properly address findings.  The targeted hormone-related treatments are the only advancement in over 30 years.  This shouldn't be the case. Breast cancer survival rates haven't really changed.  But no need, here, to get into that particular bit of discussion, which, as I'm sure you know, includes a lot of in-situ considerations.

 

My contributions to advocacy?  Not bad, really.   And, I'm not missing information, but to stay on track, the whole point of your post,  (and my comment, it's fair to say), is that there is a lot of work to be done to thwart ovarian cancer, and the more people who get on board, and take constructive action, the better. 

 



Posted by: Seana Roubinek | Jul 18, 2014 21:13

** Clarification:  I am one of only three people FROM MAINE to go to Capitol Hill in the last three years.



Posted by: Seana Roubinek | Jul 18, 2014 21:12

Maggie, you are welcome to join me on the Hill at any time to lobby because I am one of only three people to show up in the last three years; I have been there every time but one lady joined me last year and this year, it was a different lady.  I would be very grateful if you would go to DC with me given your strong feelings on this topic.  Our legislators need to hear your passion.

I also didn't state that trinkets should be purchased; I merely said to turn September teal.  I do this by wearing teal or by painting my nails teal.

Sadly, women do NOT know about ovarian cancer and its symptoms because there is very little education out there and most think it's a cancer that grandmas get.  This is why we need the funding for Johanna's Law to continue.  I carry symptoms cards with me and hand them out.  I am also involved in a program that teaches medical students as well as nursing students about the signs and symptoms of this cancer because it's not taught to them in the detail that it should be.

Some facts regarding Maine:

* The Jackson Laboratory is a National Cancer Institute (NCI) designated research facility

* There are 6 NIH/NCI active projects in Maine

* There are 1749 NIH-supported jobs in Maine

* For every dollar spent on ovarian cancer research in Maine, the economic output is $2.21.

The CDC initiative and Department of Defense funding requests are indeed specifically for ovarian cancer research which involves targeted therapies specific to a patient's genes.  Therefore, not only is research being done, jobs are also created and that money is staying in Maine.

As for breast cancer, there is early detection and targeted therapies available and there has been for many years.  Proof is that no one in my family has passed away from breast cancer since 1962.  Breast cancer survival rates are at their highest whereas ovarian cancer survival rates are exactly as they were 40 years ago.

What do you do to raise awareness, Maggie?  If you are not currently involved in advocacy, I would be glad to meet with you so that we can work together. I can help educate you on the facts regarding the funding requests and the research that is being done because you seem to missing some information.  We need people like you with a passion to make a difference.



Posted by: Maggie Trout | Jul 18, 2014 14:21

Dedicated funding for ovarian cancer research is necessary.  Education is necessary.  Women, and physicians, should know that the possibility exists, but right now, what is offered is prophylactic surgery.  Until there are findings from research, that leaves women with another body part to be removed with no guarantees.  Mostly, it provides for more cause-marketing junk with tiny percentages of sales "going to ...." 

 

"Breast cancer has made huge strides..."  Yes.  It has.  Just in the midcoast area, we're seeing younger women diagnosed.  But as to advancements?  Essentially none.  "Pink" put money in pockets, just as "Teal" promotions will.  There is a big difference between donating money directly to ovarian cancer research institutions and buying trinkets.  A Google search offers 211,000 results for teal objects to purchase.

 

The ovariancancer dot org website lists as a policy:  "Access to Oral Contraceptives" The Alliance believes all women should have access to oral contraceptives, which have been shown to decrease a woman’s risk of developing ovarian cancer by 50 percent."  That's 50%.  The U.S. Department of Health and Human Services, Agency for Healthcare Research and Quality, (AHRQ), did a study on "Oral Contraceptive Use for the Primary Prevention of Ovarian Cancer"  http://effectivehealthcare.ahrq.gov/index.cfm/search-for-guides-reviews-and-reports/?productid=1530&pageaction=displayproduct  The conclusion is that the jury is still out on risk vs benefits.  There need to be better studies and they need to be well-funded and conducted with as little bias as possible.

 

This is an horrible disease.  The blue-green lips, the trinkets, and all that, aren't going to put money directly into research, nor in assisting women and their families directly.  October is already ruined.  Can we leave September alone and lobby hard and long instead.

 



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