Today We Use Our Voices As One – World Ovarian Cancer Day 2018

May 8th, 2018 – World Ovarian Cancer Day – The One Day of the Year We All Raise Our Voices 

Last year, I had no idea how to go about doing this, but I found a small group of ladies who were willing to share their story – this year, I wanted to do it just a little different, with a larger group of ladies.

I asked them for a couple of things – age and stage of diagnosis, where they are in this whole ovarian cancer survivor fight, and what they’ve either learned from all of this or what they’d want you to know about ovarian cancer. Without fail, you’ll notice three things we all felt the same about – these are the things we want you to know:

1. It can happen to anyone – ovarian cancer doesn’t discriminate – so please stop looking at our symptoms based on our age, just look at the symptoms.

2. Your annual exam and pap smear do not screen for ovarian cancer. To date, there is NO SCREENING TEST for ovarian cancer.

3. These are the main things most women experience as symptoms for ovarian cancer: Bloating, pelvic/abdominal pain, inability to eat/feeling full quickly, changes in bowels, irregular menstrual cycles, and needing to wee a bit more often. If you have any things that persist for longer than 2-3 weeks, regardless of if they are signs of ovca, go to the doctor.

The one thing I wish someone would have done, that was around my age, was to use their voice in a manner in which I could have heard it, so I would have known ovarian cancer could have happened to me. I had no idea what to look for, I had no idea it could happen to me, but what I did and do know, is that the statistics are grave for reasons they shouldn’t be! One of them being continual misdiagnosis for younger women. No woman should have to be in the fight for her life because somewhere along the way she never heard the word “ovarian cancer”, or if she did, that she wasn’t fully informed about what to look for. Every woman in the world is at risk of developing this deadly disease!

But enough from me – here’s what some badass ovarian cancer survivors want you to know about them!

Andrea (Texas) – Diagnosed at age 37, Stage Ic – the cancer had spread to my abdominal fluid, so I was treated aggressively with chemo. Since my mother-in-law was a survivor, the symptoms were on her fridge, I knew what to look for and went straight to me OB/GYN. Both of my ovaries were effected and I would undergo surgery for a full hysterectomy. I’ve been cancer free for 6 years!

My mother-in-law was not as lucky, she was misdiagnosed for 5 months, being diagnosed at Stage IIIc when they finally figured out what was going on. She had no evidence of disease for 5 years, but had a recurrence, which she fought hard for another 5 years – this past October she passed away.

My hope is that all doctors take these symptoms as seriously as my doctor did, so it can be caught in the early stages.

Brittany (Texas) – Diagnosed at 28, low grade and high grade ovarian cancer, stage IIIc.  Currently doing immunotherapy through a clinical trial at M.D. Anderson.

I wish women, particularly young girls, knew they aren’t being checked for OCVA in their annual exams! I wish they knew what the symptoms are so they can recognize it & be diagnosed EARLIER…because advanced stage OVCA has very, very tough odds. But I also want EVERYONE to know joy can be found in even the toughest of circumstances! Jesus makes beauty from ashes & brings victory through the impossible!
(If you like Brittany’s hat, please go to https://www.monogramminglife.com/change-your-altitude-trucker-cap/ – all profits are going to Colleen’s Dream, an organization both Brittany and myself support!)

Carmen (Spain)- Diagnosed at age 49, Stage II, 10 days after my mom died due to ovarian cancer. I am BRCA 2+, I had 6 sessions of QT, and 3 interventions in 1 year, one of them one more bilateral prophylactic tectonics with prosthesis. I am now well and this month I have to review I did not have any symptoms, I was operated on for cysts and my CT and tumor markers were good, it was found in pathological anatomy

 

Charlotte (Canada) – Diagnosed at age 34 with Stage IC ovarian endometriod cancer – at the end of April I celebrated my one year anniversary of my completion of chemotherapy.

Things I’ve learned:

We need learn to listen to our bodies and advocate for ourselves if something doesn’t  feel right.

Women (and men) need to stop being afraid to talk about our reproductive health. The “lady parts” have names and functions and are important part of our health!

Caregivers are crucial. If you are stubborn like me you may hesitate to let them help, but let them. It is as much for you as it is for them. Everyone wants to do something tangible in times of illness or loss.

Doctors and Health Care aids are amazing, but nurses are angels on earth.

Recovery can take way longer than expected.

Hot flashes SUCK!

Not having to shave is sweet, being bald can feel great and wigs are awesome…but losing your eyebrows is the worse and eyelashes really do protect you from getting stuff in your eyes.

Above all, I want people to know that the cancer fight isn’t easy, and sometimes the hardest part is after the treatment is over and you are allowed to reflect on the journey your body, heart and mind has gone through. Allow yourself to mourn the parts of you that you may have lost, but eventually also allow yourself to celebrate your survival. When over 50% of women diagnosed with the disease don’t make it passed 5 years, it is truly an honor to be a survivor. Finally, that statistics needs to change…with days like World Ovarian Cancer Day, I’m hopeful that awareness and funding will increase and so will the number of teal sister survivors.

Kandise (Nevada) – Diagnosed at age 55, Stage III. My last treatment in September 2017, and I’m currently N.E.D.

I wish more women were aware of the symptoms and that your pap smear doesn’t screen for this disease.

 

 

 

Kelly (Oregon) – Diagnosed May 20, 2016, Stage IIIc at age 56. I am currently N.E.D. (No Evidence of Disease), 16 months out from my last treatment! I want women to not write off symptoms like persistent bloating or constipation. It’s not good if it lasts more than two weeks.

I wish I had known ANYTHING about Ovarian Cancer. I knew nothing.

Kristen (Australia) – Diagnosed at age 21 with Stage IIIC Low-Grade Serous Ovarian Cancer. Still in treatment 4 years later, recurrences are the worst!

I’d love for people to know the signs and symptoms of ovarian cancer and that there’s no screening test.

 

 

Mandy (Kansas City) – Diagnosed at 35, stage Ic endometroid tumor. Currently just finished round 4 of chemotherapy. I wish doctors had a plan in place for monitoring for ovarian cancer and made patients aware of symptoms and did not blow them off. Sonograms are easy and relatively inexpensive.

 

 

 

Natalie (Trinidad) – Diagnosed at 37 with stage IIIC ovarian cancer. I had just lost my father a few months before to stage 4 colon cancer. I was totally devastated. I am now 41 years a have had three recurrences.

I somehow feel much stronger because of this journey. I have the best support system in my daughters. I am still on maintenance treatments, but, I am still here!

Paula (Illinois) – Diagnosed at age 54, State IIb and I’ve been N.E.D for 18 months! I wish others knew that there was no screening test in place for ovarian cancer.

 

 

 

Randalynn (me! St. Louis) – Diagnosed at age 36, stage IC and endometrial cancer, N.E.D. 10 months. My symptoms disguised themselves as “stress related” things – it wasn’t until I would end up in the E.R. with labor like pains I would find out I had a cantaloupe sized tumor on my right ovary, but still they thought it was nothing more than a dermoid cyst. I wouldn’t find out I had ovca until a week after surgery to remove the cyst.

To those of you reading this who may be newly diagnosed, what seems impossible and scary in the beginning, is something you will be able to get through – you’ll find more strength than you ever knew you had. I wish more women knew they weren’t screened for ovarian cancer in their annual exams – there is no screening test in place. This can happen to anyone – I have no genetic reason, or family history to explain how I ended up with both primary cancers at the same time.

To those of you who are stepping out into the world “after” – I think it gets easier, but I’m still trying to figure it out. I’m not really sure you ever really figure out how everything works after being diagnosed with cancer – but I’m hopefully that a “new” and “better” me emerges from this whole thing, with an understanding that although my life might not be like it once was, due to experiences, it doesn’t mean that I still can’t do all the things I may want to, I just may have to do them in a different manner.

Shaylee (Kansas City) – Diagnosed October 2017 at age 23, after being told TWICE I was “too young” to have cancer. Stage: IIIC low grade serous ovarian cancer.

What I thought then: cancer was going to rob me of any & all opportunities & I’m gonna immediately die at a young age.

What I know now: cancer does take a lot, but if you dig deep enough you’ll find you can gain SO MUCH MORE. My entire perspective on life has changed & now I know what truly matters. Whether I have 5 months or 50 years left, I’m able to live each day to the fullest. It’s possible to SURVIVE & THRIVE, even when diagnosed young or in a later stage.

Shellie (Grand Rapids) – Diagnosed April 2017, with High Grade Serous Stage IIIc at age 40. Last chemo January 2018

What do I want people to know- Cancer is not a death sentence. Many people do survive. Also, just because you live a healthy lifestyle you are not immune from getting cancer.

My Grandmother was diagnosed at age 33, type and stage unknown, passed away 11/25/1963

What she would want people to know- Listen to your body when something doesn’t feel right go to the doctor keep asking until they figure out what is wrong with you. She went to the doctor for months and was misdiagnosed. Treatment was not available when the cancer was discovered. She died within nine months of her initial doctor visit. Be your own advocate.

 

 

 

Sherry (Florida) – Diagnosed at age 49, Stage IIIc, currently N.E.D for the past 3 months, am awaiting my three month scan on May 9th.  Please remember this is no reliable test for ovarian cancer – listen to your body.

 

 

 

 

Shirley (Florida) –Diagnosed at age 40 with Stage IIIc, high grade serous carcinoma. I wish there was more awareness of ovarian cancer….because I had several symptoms, but it was nowhere on my radar of things that it could be. I thought for sure the bloating and fullness was from the “fun foods” of summer and vacation, I have had reflux for ages, so I chalked it up to it “flaring up” so then when there was finally pain.

I waited until it was pretty severe, and still thought it was a digestive issue before heading to ER. Awareness just isn’t as abundant as with many other cancers…and sadly the stages of diagnosis are usually so advanced!

Stephanie (Vermont) – Diagnosed at age 37 with stage IIIc ovarian cancer and stage 1 uterine cancer. I want the medical world and people in general to know this can happen to anyone. I didn’t have any family history, nor any other risk factors, but here I am, a cancer survivor!

I’m in remission with an type of ovarian cancer that can’t be cured – never give up, never quit!

 

 Vicki (Colorado) – Diagnosed at age 37, stage IIIa. N.E.D – Currently 40 years old, about to have my final (fingers crossed) reconstructive breast surgery (Vicki is a previvor, with her chances being elevated to develop breast cancer) and preparing mentally for the adoption process.

Ovarian cancer can happen to anyone! It’s is life changing. Signs can be as simple as bloating – I was diagnosed with mild IBS, and in reality, it was probably my ovarian cancer…

Vivian (Pennsylvania) – Diagnosed at age 52, stage IIIc clear cell high grade. I completed 12 weeks of chemo but found I was platinum resistant. We found an immunotherapy trial and I was on those drugs for 11 months. I developed severe arthritis from the drugs and had to stop BUT my scans cleared up and I’ve been N.E.D since Sept 2017!

Currently getting scanned every 3 months. I wish I would have known the symptoms of OC and I want people to know your yearly pelvic exam doesn’t detect it. That is why I try to raise awareness. I also have NO cancer in my family and I was tested for several cancer genes and I’m negative for all of them! It can happen to anyone!

Zena (Manchester, England) – Diagnosed at age 42, Low Grade State IIIc Ovarian Cancer. At first I was treated with chemotherapy for high grade, but we soon found out it wasn’t working and I had low grade. If you have abdominal swelling for unknown reasons, go to the doctor to have it checked out.

 

For more information on World Ovarian Cancer Day, please visit –http://ovariancancerday.org

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