Women need to better understand the symptoms of ovarian cancer. Doctors and healthcare need to stop dismissing symptoms and do the right thing. Unfortunately, it's common for women diagnosed with ovarian to be staged out. It's usually caught in stages 3 and 4, which can be deadly. The five-year survival rate has not changed much in the past 50 years, which is disappointing.
See attached link for staging and survival rates: https://www.cancer.org/cancer/ovarian-cancer/detection-diagnosis-staging/survival-rates.html
Mara Kofoed, 45, was diagnosed with ovarian cancer in December 2021 after months of trying to figure out vague and seemingly unrelated symptoms. She found doctors dismissed them at every turn and didn’t connect them to a tumor. It took a visit to an emergency room to finally get answers. Kofoed, who lives in Hudson Valley, New York, shared her story with TODAY.
It was the biggest shock of my life to find out that I had ovarian cancer. I would have suspected maybe breast cancer because my grandmother had it, but ovarian cancer was very, very off the radar.
I saw the first gynecologist I could get in with, which wasn’t until November 30, 2021. I told him about all of the symptoms, and my belly was very large, but it wasn’t like I went in there going, “I’m ready to get checked for ovarian cancer.” I still had no idea what was wrong with me. I wasn’t stringing these things together; I didn’t know they were all related.
He ignored almost all of the symptoms that I mentioned but focused on one. He leaned back in his chair and said to me, “Women your age stop wanting sex and so they get dry.” He was focusing on the pain-during-sex part.
He didn’t seem concerned about my belly size. I wanted to get a scan, but he said, “You don’t need a scan.” I left that appointment completely traumatized because of what he said to me, how he ignored me and dismissed what I was saying. His office sent me a document in the mail that said the Pap test was clear and “We’ll see you in a year.”
A week and a half after that appointment, on December 10, I went to a local urgent care off the highway on a Friday night because I didn't think I could get through the weekend. The distended belly was so extreme that it severely affected my walking, breathing, eating, drinking, sleeping, sitting and going to the bathroom. It was adding pressure to every organ — so intense, I thought I might die. It was one of the most painful and scary things I’ve ever experienced.
I told the nurse all of my symptoms. She looked at my belly and took it seriously. She knew right away this was not normal and said, “You need to go to the ER tonight and get a CT scan.”
At the ER, doctors came back in after the scan and said they found a mass. I needed to see an oncologist immediately.
It turned out to be stage 3C ovarian cancer. Each ovary had a tumor — 12 centimeters on one side, 6.5 centimeters on the other. There were two smaller tumors on the rectum and bladder that were about 2 centimeters. Just a week and a half earlier, the doctor examined me and missed that.
If I had waited a year for my next appointment, as that doctor’s office advised, it would have meant death. I wouldn’t have lasted a year.
For the full story, click here: https://www.today.com/health/womethe ns-health/,ovarian-cancer-symptoms-dismissed-rcna35220
This makes me crazy. Given the statistics and limited options to treat ovarian cancer this doctor that ignored Mara Kofoed symptoms is liable. It happens way too much. As I discussed above because symptoms are ignored or misdiagnosed for GERD it's common for ovarian to be diagnosed staged out like, Mara Kofoed at stage 3C. That is the same stage my Mom was diagnosed.
What is stage 3?
Stage 3 ovarian cancer means the cancer has spread outside the pelvis to the lining of your abdominal cavity (peritoneum). It can also spread to the lymph nodes in the back of your abdomen.
At this stage it is likely you will need surgery to remove as much cancer as possible and chemotherapy. In my Mom's case, she wasn't stable enough for surgery immediately, so they prescribed neoadjuvant therapy or preoperative chemotherapy. This is pre surgical chemo to shrink larger cancers. The idea is that this process will give the surgeon the best chance of removing the cancer completely. It's hell and while ovarian cancer foundations do a great job fundraising for patients and spreading awareness to understand the symptoms stories like this are way too common.
Signs and Symptoms of Ovarian Cancer
Ovarian cancer may cause several signs and symptoms. Women are more likely to have symptoms if the disease has spread, but even early-stage ovarian cancer can cause them. The most common symptoms include:
Bloating
Pelvic or abdominal (belly) pain
Trouble eating or feeling full quickly
Urinary symptoms such as urgency (always feeling like you have to go) or frequency (having to go often)
See link: https://www.cancer.org/cancer/ovarian-cancer/detection-diagnosis-staging/signs-and-symptoms.html
If you or a loved one has any of the above you must demand a transvaginal ultrasound, CA125 blood test and/or a cat scan. Follow your gut and do not take no for an answer. There is currently no preventative screening for ovarian like a pap smear or mammogram. You must advocate for yourself.
If your health insurance refuses to pay, go anyway and settle up with them after. They are playing with your life. If a doctor is ignoring you go to another one or go to an emergency room. It really is a sad state of affairs that you may have to fight for care but it could mean the difference of life or death.
In "Not in Vain, A Promise Kept" I share everything my Mom and my family went through in my Mom's battle with ovarian. Unfortunately she lost after eight months of absolute hell, misdiagnosis, medical errors and suffering. I don't know if she had gone earlier for help if she would have survived it because we found out her cancer type was very rare, sarcomas and deadly. Please don't wait. Don't take no for an answer and if you find you have persistent symptoms listed above do not let a doctor ignore you.
