Ovarian cancer nonprofit working to quickly fund research and trials — starting with the rarer borderline (BOT) and low-grade serous (LGSOC) types.
Miami
Joined December 2023
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Rare doesn't mean unimportant. Borderline and low-grade serous ovarian cancers get far less research attention, and patients feel it. Help us change that. Donate at nottheseovaries.org #OvarianCancer #CancerResearch
Chemo first, surgery second. For many women with advanced #OvarianCancer, that’s how treatment begins. Why the order matters, who it’s right for, and why rare subtypes may need a different plan: nottheseovaries.org/neoadjuv… #LGSOC
Myth: a routine Pap test screens for ovarian cancer. Fact: it doesn't. Pap tests check for cervical cancer, and there's no routine screening test for ovarian cancer. Know your symptoms. Share to set the record straight. #OvarianCancer
Questions for your next appointment: What else could this be? Which tests would rule out something serious? Can you note in my chart that I raised this? Asking isn’t being difficult. It’s advocating for your body. #PatientAdvocacy
A doctor told Abbey Dufoe to get a new job. A nurse practitioner said she probably had gas. The real cause was a mass on her ovary. Her story of living between “sick” and “well”: nottheseovaries.org/abbey-du… #OvarianCancer
Chemo ends. Then what? Maintenance therapy can last for years, and the right plan depends on your tumor, not the average patient. Questions to bring to your oncologist: nottheseovaries.org/ovarian-… #OvarianCancer
Today's ovarian cancer treatments were first tested by women in clinical trials. Worried about a placebo? In cancer trials, control groups typically get standard care. Ask your doctor which trials fit you.
#OvarianCancer #ClinicalTrials #WomensHealth
"Platinum resistant" sounds like a door closing. It's actually a measure of timing, and the treatment options that follow it have changed in the last three years. What the label does (and doesn't) tell you:
nottheseovaries.org/platinum…
#OvarianCancer #CancerResearch
Only about 20% of ovarian cancers are caught early, and there's no routine screening test for most women. Your best defense? Understanding your own risk. Here's what to know: nottheseovaries.org/ovarian-… #OvarianCancer #WomensHealth
Roughly 77% of ovarian cancer patients experience cancer-related fatigue. It isn't ordinary tiredness, and sleep doesn't fix it. What does help: gentle movement, pacing, treating sleep and mood, and asking your care team to look for the cause. #OvarianCancer
A 137-mile drive became a 17-mile one. What telehealth can (and can't) do for ovarian cancer patients, and how to prepare for your first virtual visit: nottheseovaries.org/teleheal… #OvarianCancer
Your Pap smear doesn't screen for ovarian cancer. Most women diagnosed have no family history. And the "silent killer" isn't silent.
11 myths that cost women time, debunked: nottheseovaries.org/ovarian-… #OvarianCancer #WomensHealth
"Why won't this bloating go away?"
"Am I being dramatic?"
"Doctor doesn't believe me, what do I do?"
Women with rare ovarian cancers often search for years before finding answers. You're not being dramatic. Start here:
nottheseovaries.org/ #OvarianCancer
"No evidence of disease" isn't the same as cured. And 3 in 4 patients whose charts say NED still believe they have cancer. What the phrase really means after ovarian cancer: nottheseovaries.org/no-evide… #OvarianCancer #NED
You get maybe fifteen minutes — while still absorbing the diagnosis — to make fertility decisions that can't be undone.
Nobody should do the hardest math of their life at that moment.
Newly diagnosed and want children? Ask about fertility preservation before surgical planning.
At the end of chemo, most hospitals let you ring a bell.
For many women with low-grade serous ovarian cancer, there's no last day. Just treat, scan, wait, recur, treat again.
You didn't miss the bell. You were handed a different kind of race.
#OvarianCancer is usually caught late. Previvors, women with inherited risk who've never been diagnosed, get something almost no patient does: time to move first.
What that looks like in practice: nottheseovaries.org/ovarian-…
"Symptoms are often dismissed or misdiagnosed as other benign conditions, and that delay leads to more advanced disease." —our founder Emily Campbell
This #OvarianCancerAwarenessMonth, she explains how to close the diagnostic gap. cxorecap.com/thought-leaders…
"It's probably just stress."
"You're too young for that."
Three years later: Stage 3.
Weeks of bloating, early fullness, or urinary urgency? Ask about ovarian imaging. At any age.
#OvarianCancerAwarenessMonth #StandUpToCancer
Not These Ovaries retweeted
Today, on the 3rd annual LGSOC Awareness Day, we're recognizing the power of community in helping people navigate life with low-grade serous ovarian cancer (LGSOC).
The LGSOC Resource Guide was developed to help make trusted information and support easier to find, bringing together resources from advocacy organizations across the ovarian and LGSOC cancer communities to a single destination for patients, care partners, and families.
Download the Guide from the LGSOC Awareness Day website: lnkd.in/efJrAGq9
@staarovarian @NotTheseOvaries Sandy Rollman Ovarian Cancer Foundation @ovarcome @ocrahope @NOCCNational @UniteforHER Sharsheret: The Jewish Breast & Ovarian Cancer Community @SHARECancerSupt @GYNCancer @WOCCnews
#LGSOCAwarenessDay #LGSOC #OvarianCancer #RareCancer #PatientAdvocacy
ALT LGSOC Resource Guide available at https://www.lgsocawarenessday.org/lgsocguide