Two years ago, September of 2105, I lost my wife to Ovarian cancer.
Her diagnosis took six weeks, and she was gone just four days later, only 60 hours after her first Chemo treatment.
My wife didnt get an opportunity to help raise awareness, so it fell to me to spread the word. It's a year round effort and my education about this horrible disease means I'm constantly learning about more cases and sadly more stories that end with another woman's life cut short.
Surprisingly. With 70% of cases occurring in the post-menopausal years, I'm learning of many cases of women in their teens and twenties losing the fight with OvCa.
I was blessed to have Sandy as my wife for nearly 41 years.
I receive some assistance from a few women who beat their cancer, plus a few more who lost a loved one. I hope to continue my efforts at least until some organization is formed to carry on and hopefully expand on what I can accomplish on my own.
Hi, Sorry you lost your loved one Sandy but the fact that you have continued to bring awareness of ovarian cancer to help in the future, is a lovely tribute to Sandy.
We need people like you and hopefully Ovarian cancer will get the awareness it needs..Thank you for your efforts and wish you all the best for the future,,Lorraine xx
God blessed me when he loaned Sandy to me as my wife for nearly 41 years. My efforts honor both God and Sandy.
I've learned so much about this horrible cancer and its sixty different types that if I didn't pass the information on, I'd be as criminal as someone who sees a bridge out, yet does nothing to warn others of the danger.
Something has to be done, with 22,000+ new cases in the U.s. And more than 220K worldwide, with early diagnosis being the fastest way to improve survival rates.
I was thinking about the same tonight, specially regarding media attention, don't hear much about it and was not even aware about it myself until diagnosed with low grade serous stage 2 this past July.
My cancer is a rare form of OC witch by the way is 10 percent of all ovarian cancers that the well known specialist at MD Anderson speaks of not much has been done about it since it's rare, so therefore not much funding available to come up with treatments, so doctors treat low grade OC the same way as high grade OC in majority of cases even though very different, but they have nothing else. Pharmaceutical companies not very interested since there is not enough money in it.
It seems that at least now there are new research going on for OC in general, but not compared to other cancers such as BC, Lung and Prostate to the best of my knowledge.
What a hopeless feeling for so many of us women, as it is still called the Silent killer. it should not be SILENT!
Shouldnt the government put more money into this research?
Unfortunately with 60 different types of OvCa many are less common than others. Your best hope may ne to look for clinical trials that address some of the rare types.
Search for Terri Nickens Gerace on FB. The standard Chemo did little for her and it took a clinical trial for the doctors to beat hers.Like me, Terri is an advocate for more research as well as increased education.
You mentioned MD Anderson, which is where Terri goes for treatment. There is more support in Texas then Louisiana where Terri and I live. OCRFA has active teams there working to educate doctors, nurses and other medical personnel through their Survivors Training Students (STS) program. Also, Judy's Hope which offers support for women undergoing treatment for OvCa.
Visit NormaLeah.org and request 50 of their BEAT Symptom cards to share with women to overcome the silence about the most common symptoms.
OvarCome is another group in Houston, working closely with MD Anderson in raising awareness. If you get to talk to Runsi, tell her Dennis from Louisiana said hello.
N.O.C.C., the National Ovarian Cancer Conference is headquartered in Dallas and operates chapters there, Austin, San Antonio, and is working to start a Houston chapter. They offer educational materials, including one handout in Spanish that I need to re-order.
Newk's Eatery has opened two or more of their restaurants in the metro area in the past year and they support various groups as well as research in the OvCa field. The founder's wife, Mrs. Newcomb is a survivor. You might be able to get a few of their Teal cups to use in education outreach. I order my own with the BEAT symptoms on them as well as my inspirational quote -
UNLESS someone like you cares a whole awful lot,
Nothing will ever get better. It's Not!
Dr. Seuss
If you tell ten women, who each tell two more, with each of them reaching two more, between us, we can make a difference in helping some to an earlier diagnosis..
Thank you so much for the information given above and for all you do. Couldn't it answer before as my dad just had a stroke and I am my elderly parents care taker right now.
To all of us sufferers out here I thank you for your fight. I have been battling this disease for nearly 5 years. It is starting to win with me as the minor spread becomes more and more through my body. With little drugs to help and most chemo drugs used and resistance building we all get to the stage where we are out of options. I am brac negative which means less options. I also live in Australia and we have less drugs approved than the USA and by the looks of it the UK. Our country takes longer to approve clinical trials and probably less money to release drugs on our PBS system. I am lucky that I have private health insurance but many women don’t have that luxury. Keep up the fight as we need fighters to carry on when we have passed on to the next stage. Much love Sharon
Pleases don't give up hope. One woman I've connected with to raise awareness is a survivor who fought and fought OvCa for seven years before beating it.
New therapies and clinical trials are helping some who wouldn't have won their fight with the treatments available just ten years ago.
If you contact gillharlerfund.org I’m sure they’ll be more than happy to send you some awareness cards, the lady Gill Harler (who unfortunately passed away a little while ago) designed these to raise awareness of this horrid disease. Xx
I order the BEAT Symptom cards from NormaLeah.org in the U.S. in my outreach, "Dispelling the Darkness" and also order OvCa information cards in Spanish from the N.O.C.C. In Dallas, TX -
Hi Callmemum, thank you for mentioning Gills a awareness cards. I have some & put them in birthday & Xmas cards. I give them to any one I speak to about this horrid cancer. They are so small & neat you can keep them in your handbag.
I have Gill in my thoughts very often & Clare is there too. Thank you for posting take care Cindyxx
So great to have people like you helping raise awareness. You bring such a perspective to the husbands and partners who lose loved ones too. They need help and support too. This disease like all diseases affects families not just individual. Bless you
More needs to be done, should be done, and Must be done.
Some of those lives were taken during their younger years, far too many who never had a chance to love, marry, start a family, experience life as an adult. While seventy percent of all cases occur in the post-menopausal years, that still leave thirty percent that appear in the pre-adolescent and fertile years.
Until there is an effective diagnostic tool for screening, education is the surest means to empower women to help them reach an earlier diagnosis, as was done when the medical community began advocating women perform monthly self-exams to find breast cancer before their next Mammogram is due. That one 'tool' has helped many cases of Breast Cancer to be confirmed earlier, reducing treatment time and cost and increasing the number of survivors.
Do the one in six dozen women facing Ovarian cancer deserve any less?
Last night was the first time I ever visited this site. It was due to one of the Twitter feeds I get on OvCa.
I post in several FaceBook forums - not all focused on cancer.
Most of my posts are in groups based in the U.S., but even closed groups can have readers/members around the world.
Hi Dennis. I had no idea there were 60 types of OC. More power to your voice/pen/typing fingers !
Best wishes. Pauline (Australia).
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Yes, and the big news is that 75% of the 60 germinate in the Fallopian Tubes. Much like you transplant tomato plants in your garden with the seeds sprouted elsewhere.
They are even considering relabeling those as Fallopian cancers.
Since that has been proven, some doctors are open to the idea that once a woman has decided to not have children, or no additional children, the Fallopian Tubes can be removed - A bi-lateral Salpingectomy. The Ovaries, if healthy, remain and continue providing the woman with natural hormones.
Eliminating the germination point for those 75% should reduce the risk, so it's more likely to be considered in the high-risk women who are BRCA positive or have Lynch Syndrome - both increase the woman's risk above the one in six dozen of the standard population - As high as one in four dozen for for one of the BRCA mutations. Together, mutations on BRCA 1 and 2 account for fifteen percent of all cases of OvCa.
Although I could pass myself off as an OB-Gyn on a TV show, I have no previous medical background. Because of losing my wife two years ago, i attended the National Ovarian Cancer Conference (U.S.) last year, and have read a few books, and studied online to be better informed for my educational outreach.
I've probably reached far more women online than the 5000+ I've spoken with in person between groups I've addressed, table top presentations, and one-on-one approaches.
One of our folk heroes in the U.S. is Johnny Appleseed who lives on in our history for planting Apple seeds as he wandered around the colonies.
I'm somewhat similar as I often pass out the BEAT Symptoms on cards, magnets, and cups as I travel, and have done so in Texas and Louisiana frequently, as well as Mississippi, Alabama, South Carolina, Virginia, Maryland, Washington, D.C., Virginia, West Virginia, Ohio, Kentucky, and Tennessee.
I also suggest to many women that they visit NormaLeah.org and request 25 or 50 of the BEAT symptom cards (donation is optional) to warn others in their family and circles of influence.
More has to be done, at least until an effective screening test is found and mandated.
Hi I am so sorry you lost your wife to this dreadful disease. I whole heartedly applaud your determination to raise awareness. Thank you so much. Kathy xx
So sorry to read you lost your wife, Sandy, to this horrible disease. I'm sure she would be so pleased and proud of you with all the things you are doing to raise awareness of Ov Ca. It's horrifying that so many younger people also succumb to this Cancer, too.
I am full of admiration for you. Thank you for all your efforts. Solange 😊
I actually provided much of the informational handouts, cups, magnets, BEAT symptom cards and Teal Cancer Awareness Lapel Pins at the funeral for one 22 year young woman who lost her battle, just months after graduating from college. Her grandmother asked me for materials, which I brought, and I stayed at the table to answer any questions.
Her funeral service was a celebration of her life. Lexi fought for more than a year after her diagnosis at 20, and was found NED for three months before the first recurrence claimed her life. Her grandmother is an RN and has joined me at my Teal table at employee health fairs and the School of Nursing at our local university.
My outreach is 12 months out of the year, not just during May and September when most OvCa outreach and walks are held.
When a senior woman dies due to cancer, it isn't as newsworthy unless they are a celebrity.
But, when a woman in their twenties or younger has OvCa and dies, it gets more notice - especially in the Internet age.
Just Google Brittany Burns or Laura Crandall Brown, and you'll find their names will live on, whether the loved ones create a legacy and Jim and Celia Crandall have created in their daughter's memory. Laura's Foundation is bringing help and hope to women in Alabama, as sell as funding research that could have a global impact.
Both women were 22. Neither had the opportunity to bring a child into the world.
And Brittany's story points out that being young and vital is no defense in itself, as she was diagnosed December 9th and lost her battle just two months later. I often cite her battle to reinforce the importance of young women memorizing the BEAT Symptoms. It's much easier to memorize four symptoms with a mnemonic like BEAT.
Find the BEAT Symptoms at NormaLeah.org - Jodie lost both her mother and her mother's sister to OvCa, so she created the Norma Leah Ovarian Cancer Initiative eight years ago, and has made great strides in raising awareness both in her region and across the U.S.
Adding my condolences here and just wanted to say thank you. Your selflessness, determination and empathy will literally be life-changing -- for yourself and others. I am so very sorry that your beloved wife died -- (and I hate to use the word "but" here) but to be able to leave a legacy in death is so very special and utterly priceless. The world needs more doers like you.
Ten thousand+ husbands face being widowed like me. So, providing the warning to women in effect can touch many hundreds of others - family members, friends, etc. for every woman who lives or at least lives longer due to an earlier diagnosis.
Currently in the U.S., diagnosis of OvCa typically takes four to twelve months - An unacceptable delay that results in 70% being diagnosed at the later stages and higher mortality rates.
Like everyone else I totally admire and applaud your efforts to raise awareness of this horrible and little known cancer after the sad loss of your wife Sandy. I’m so glad you had 41 wonderful years together.
Here in the UK we have similar awareness problems with OC though charities like Ovacome (who set up this forum) and Target Ovarian Cancer working hard to change that. I feel very strongly what is needed is a national OC awareness campaign funded by government like we have for lung, bowel and breast cancer, but of course it always comes down to lack of money for the ‘rarer’ cancers. Though with 1 in 50 women diagnosed with this at some pint in life it is really not that rare!
Good luck with your continued work, it is so important.
My earlier reply must have been deleted by admin. They advised me not to post statistics on this site, including a woman's risk of getting OvCa as well as the survival rates for the different stages of diagnosis. I guess that's why I don't see my reply.
As for U.S. stats, the lifetime risk is rated as one in 72, 73, or 75 depending on which study. I just say one women in six dozen will face OvCa in her lifetime.
I am very sorry you lost your wife and I am sure she would be proud of you for raising awareness. However, I think it may be better if you set up a separate group for relatives and further information as you can emphasise with what they are going through. I come on to this forum for support, helpful information and positive feedback and find it very depressing to hear of people that have died or are getting worse. I know everyone means well and I appreciate the support but I do not want to be more afraid than I already am and would please ask you all to think about what you are posting to people who are trying to survive. Sorry I don't mean to upset anyone but I will stop using the forum as it results in distress and many sleepless nights. I wish everyone all the best in their future.
Love
short friend
So sorry you lost your wife to this disease - I'm sure she would be so proud of your efforts to bring awareness!
Sile x
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My efforts aren't about myself or making my late wife proud. I do it for the future victims of Ovarian cancer - not just the 22,000 in the U.S., but also for the husbands, children, parents, siblings, and extended family touched by the deadliest Gynecological cancer on the planet - Will no effective screening to aid in early detection.
sorry you lost your wife Sandy, I was messaging with someone not on this forum about a member of his family who died last year quite young with the disease. Yes we need to raise awareness, there are groups that you can get Literature from and you can leave the leaflets at your surgery local library etc. This is what I do, if you are up to it also contact a local newspaper or radio station and speak about your wife and her illness. Every thing helps, you could also contact Macmillan or Ovacome to see how you could be of benefit there.
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Suziki,
I'm in the U.S., so I go to different sources for literature - N.O.C.C., NormaLeah.org, the OCRFA, etc. I order the BEAT Symptom cards 500 at a time to distribute, along with plastic stadium cups and magnets I have custom printed with the BEAT Symptoms. I've probably handed out more than 3500 of the Teal Ovarian Cancer Lapel Pins as I'm giving out the information. I order the BEAT cards 500 at a time from NormaLeah.org here in the states.
I have a Teal tablecloth with a banner I spread across it with my "Dispelling the Darkness" logo. I have set up my table at cancer walks, health fairs, food banks, various women's events, and even the Houston Promotional Products Association - more than a dozen times in my first year and a half. I even received permission to set up and speak to the Nursing students at my local university - in the School of Nursing building.
Before my first health fair, I drove more than 1000 miles from Louisiana to Baltimore to attend the National Ovarian Cancer Conference last February to educate myself further to be better prepared to answer questions, not only about OvCa, and it's potential risks, but about genetic testing, the BRCA 1 and 2 genes that account for 15% of all cases, and the links of BRCA genes to both men and women, specifically linked to Breast, Ovarian, Colo-rectal, Pancreatic, and the last confirmed connection to Prostate cancer in men. Yes, men can pass on the mutated gene to their daughters.
Last September, I was asked to provide handouts for the funeral of a local woman who lost her life to this horrible disease at just 22 years of age. Not only did I provide the lapel pins, magnets, cups and symptom cards, but I was also invited to stand by the table and answer questions for any and all who stopped by. When Lexi's service started, I stayed at the table so her friends and family could attend, while I stayed to speak with those arriving late or leaving early.
I've been interviewed for two local newspapers, one local magazine, and joined a radio broadcast for an hour on a talk format program.
I've even addressed the women's groups at two local Chambers of Commerce.
I talk with women one on one, in small groups of two to six at a time in parking lots, shopping malls, grocery stores, etc, and while dining in restaurants.
Newk's Eatery, a smaller chain in the South and Southwestern part of the U.S. has invited me to join them on their fundraising committee as they raise money for research and various OvCa groups including NOCC. I'm also scheduled to set up my Teal table in their dining room on Saturday's - their busiest day to distribute literature and speak with the diners who stop by.
I have window decals that I have been able to display in a variety of businesses, including one of the larger grocery stores in my area, so it's available 24/7. I found an acrylic frame I use and put one of the decals in it and display it with the stadium cups and cards on my table when I dine at a number of restaurants - always with the manager's permission.
I also post extensively online, in all manner of forums.
It's been two years since I lost Sandy, and I have committed to raising Teal Awareness for a least a decade.
My grandmother was the greatest person I ever knew. She was sweet and never became upset with me, no matter what. She had always been there since I was born. Growing up, I just expected her to always be there. A few months passed and she became very ill and was hospitalized for two weeks. Finally, the doctors said she could go home or go to a Ukrine clinic. She lived for six more days. I know that she no longer suffers. I just wish her cancer could have been cured. I hope that no other woman has to go through what she went through. I will always love and remember her. Always
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