Women and Colon Cancer Misdiagnoses
Believe it or not, it was only in the last decade that cardiologists, health research institutes, and the medical profession at large, began to question the way women experience (and are treated for) heart attacks. Even the long term studies, such as the Harvard Physicians' Health Study (Phase I, 1981-1995) were conducted solely on male participants. This was the landmark study that concluded a low-dose aspirin regimen had a significant effect on the risk of the instance of a first heart attack; it reduced the risk by 44%. With only male participants (incidentally, they were also all physicians age 40-84), there was no data on how this regimen might affect women's long term health or reduce their risk for a first heart attack.
That only men were included in the study implies that the medical community believed that only men had heart attacks. Was this because women's heart attacks were going undiagnosed? Were women dying from heart attacks because they were being treated for the wrong emergency? Or perhaps it was because women didn't experience the same heart attack symptoms as men. I have so many questions, but the thing I keep coming back to is that women were being treated based on the male model.
Even Phase II of the Harvard Physicians' Health Study (1997-2007) recruited only male participants to study the effects of certain supplements on the occurrence of common health conditions, cardiovascular disease among them. What other diseases might they have also been evaluating in this study? You guessed it: total cancer, prostate cancer, colon polyps, and colon cancer. Did the study yield any interesting results when it comes to vitamins and supplements preventing cancer? Not really. But it did yield another point of interest for us ladies out there: we had no idea if this is the same for us. Not that it matters--who is willing to put their life and survival in the hands of a little extra Vitamin C? (not me)
There has been a 20% increase in colorectal cancer in people younger than 55 since 1995. This statistic does not differentiate between men and women, but it's certainly scary enough for doctors, surgeons, and anyone who is alive to take note. I'm not here to talk about the reason for the rise in this number (most medical research will attribute this to lifestyle factors, while overlooking the obvious polluted environment we live in). I'm here to point out that just like with heart attacks, there has not been a study on colorectal or colon cancer done solely with female subjects. I think this is a significant shortcoming, and may explain why so many of us younger women are not only seeing an increase in diagnoses, but a high percentage of us under the age of 50 are being diagnosed with late-stage metastatic disease. It's important to note that these rates are decreasing in patients over 65.
Since my diagnosis with Stage-4C Colon Cancer* in 2021 at the age of 47, I have met many more women in their 40s with the same diagnosis. What piqued my interest, though, was not our age or that we all had late stage cancer, but that we all presented with similar symptoms that initially sent us to our doctors and that those symptoms were largely misdiagnosed by the oncology team. None of us were going through or had completed menopause--we might have been considered perimenopausal because of our age and mild symptoms, but we were not considered part of this group yet.
My story is relatively the same as theirs. At first, my complaint of severe uterine cramps outside of menstruation was what drove me to my gynecologist. After an ultrasound and exam, my gynecologist determined that what was going on with me was out of her area of expertise and referred me to a gynecological oncologist. At this point in my story (as with the other women I've spoken to) all of this seems logical and expected given the symptoms and narrow scope of tests available to our ob/gyn. I place the blame on the gynecological oncologists and general oncologists who, from this point on, fail to look beyond our "female-ness" and see the full picture.
In my case, the gynecological oncologist ran two important cancer marker tests: CA-125 (which screens for ovarian cancer) and CEA (which screens for various other cancers, including colon cancer). What she failed to acknowledge was that the uterine cramping had stopped, that I was having intestinal and colon spasms, and that I was losing weight at a rapid rate (2-3 pounds per week). And although my CA-125 came back 0, and my CEA was well above the normal range, she continued to pursue an ovarian cancer diagnosis. Eventually, she gave up on that and on me--handing me my medical records and sending me from her office (incidentally without a referral to any other doctor). I wasted two precious weeks as this doctor's ego propelled her down a path she must have known would culminate in a dead end for her area of expertise. Thankfully, my primary physician was on top of things and referred me to a top notch team that quickly diagnosed colon cancer within 3 days of my initial visit, and I was able to get the care I needed in time to treat the cancer.
My story is not unique! In the last year, I have spoken to at least a dozen women in their 40s, all diagnosed with Stage-4 Colon Cancer in the past 2 years. And all of them have nearly identical tales to tell: gynecological symptoms distracting the doctors from looking at the colon. Some of these women didn't even get a colonoscopy as part of their diagnosis, and one was given chemotherapy for ovarian cancer--it was only when the cancer didn't respond to the drugs that the doctors figured out they were treating the wrong kind of cancer. I really do wish I could say these stories are rare, but almost every day, more women contact me through my website or social media to share their variation on the same theme. Unfortunately, there are some who are no longer with us, because it took too long for the colon cancer to be diagnosed and the proper treatment to be used.
What in the world is going on here? What I keep coming back to is the cardiology studies mentioned above. The Harvard study wasn't a small thing--it was the basis for the current practices regarding heart attack prevention, namely the use of aspirin. Colon cancer has historically affected older adults in their 70s. And quite frankly, there are actually people out there who believe women don't get colon cancer. This is completely unfounded as women have roughly the same risk as men. Regardless of our gender, our doctors remind us all to get our first colonoscopy at age 50 (although now that age has been lowered to 45) and every 10 years after that. There doesn't seem to be much difference in the way men and women react to the chemotherapy drugs or the other types of treatments they receive. The problem seems to be in the diagnosis process.
It's time that oncologists take a step back and look at women as a separate entity from our male counterparts during diagnosis. Perhaps a study needs to be conducted on young women with colon cancer--how they present with the disease, especially incidental gynecological symptoms. I was not the only woman in my group who had colon cancer on the outside of my colon (with a clear/negative colonoscopy biopsy) and whose ovaries were covered in colon cancer. I was also not the only one who did not have most of the symptoms of colon cancer. It's time to listen to the female patients and believe them when they describe symptoms that may not align with conventional thinking.
So many more lives can be saved if the proper treatments and surgeries are given sooner. It's also important that women out there know that what they are experiencing has an explanation, and someone out there knows the answer.
*My staging was pT4a pN2a pM1c It had grown through the colon wall, spread to 6 lymph nodes, and spread to distant organs (liver). Learn more about Colon Cancer Staging.
