Common Cancer misconceptions

When you think of someone diagnosed with cancer what comes to mind? I'm guessing it's something along the lines of a frail, pale, thin, elderly man or woman with little to no hair and maybe a head scarf on. Or maybe it's just someone who is constantly nauseous and laying in bed all day because of terrible fatigue. While these images are often true, cancer is so much more than that.

Today, I am going to debunk many common cancer myths that those of us with cancer deserve for general society (those without cancer) to know. It is my hope that in learning some truths behind cancer, you will have a better understanding of some of the hardships that come with being a cancer patient that are not frequently talked about. These statements come from my personal experience with metastatic breast cancer (MBC), so while everything may not be true for all types of cancer, I still believe these truths will help you support your loved ones who face this disease.

Myth 1: If someone has hair, they don't have cancer

This is probably one of the most common assumptions people make, and to be fair, it makes sense. As a society, we are taught so little about cancer treatment, other than people with cancer go through chemotherapy, and with chemo, comes hair loss! While this is true, not all types of chemo cause hair loss, and there is actually newer technology called "cold capping" that can help prevent hair loss while going through certain chemos. Obviously, not everyone can partake in cold capping whether it's due to cost, lack of resources, or the personal decision not to, and sometimes cold capping is ineffective, so it is still very common to see hair loss with chemo. But the other side to this myth is that just because someone isn't going through intravenous (IV) chemo, doesn't mean they aren't enduring other difficult treatments. Breast cancer is actually known as the "invisible disease" because oftentimes people with breast cancer look like normal, healthy people. This leads us to myth #2!

Myth 2: If chemo is complete, treatment is over

This has been one of my largest frustrations, especially since I am diagnosed with MBC. Many people are completely unaware that having MBC means that you will be in treatment for life. I’ve been reminded by close family members and friends to give grace to others because this is a very common misunderstanding, especially for people with minimal medical knowledge. So, while I apologize for my frustration, I ask that in return, you read this brief educational blurb. :)

Chemotherapy only skims the surface of cancer treatment. The most commonly known treatments are probably radiation, and some type of surgery to remove tumors, but there is still so much more that goes into treating cancer. In the case of a lower stage of breast cancer, women often have to stay on oral meds for five to ten years after the previous treatments listed above, to prevent recurrence. Those of us with MBC will be on a variety of treatments for life including a wide range of oral meds, muscular injections, IV infusions, and more.

I think the reason it is so frustrating when others assume that treatment is complete after IV chemo, is because the other options listed above come with side effects and difficulties of their own. They may not be as intense as chemo, but they are still serious treatments that deserve to be more well known. Since doing IV chemo the first time in 2021, I have been on Ibrance, Anastrozole, Zoladex, Faslodex, Xeloda, had my ovaries removed, had 14+ scans including PET, MRI, and CT, and had innumerable blood draws and appointments. I am also on my third line of IV chemo, Trodelvy. Explaining the details and side effects of all of these treatments would take way too long, but I think it's important to show just how life altering treatment for MBC is and why it is frustrating when it is minimized.

myth 3: When people with cancer are active and busy, their cancer must not be that bad

It is possible to have metastatic cancer, and still be living a full and active life! In fact, most of the women I’ve met with MBC are rockstars and are doing as much as they can to do the things they love and have the best quality of life as possible. Once you’re diagnosed with a terminal disease you quickly learn your next day is never promised. So, why wouldn’t you suck up the pain, fatigue, and any other side effects and do what you love while you can!? Just because someone with cancer is exercising, traveling, and enjoying life does not mean that their cancer is not a threat. While some treatments keep cancer cells at bay with minimal side affects, the reality is that cancer patients are always aware that cancer cells are lurking beneath the surface and could spread to multiple organs or other parts of the body at any time. While we try to live our lives fully, this reality never goes away and weighs heavily on us. So, please recognize that even though we distract ourselves and do the things we love most, we are still going through the toughest, physically and mentally draining, time of our lives.

Myth 4: All types of breast cancer are the same

One of the biggest things I've learned since being diagnosed is that cancer is extremely complicated!!! There is so much I have learned that was never even mentioned in nursing school because of cancer’s complexity. Not only are there different types of cancer (breast, lung, colon, brain, multiple myeloma, leukemia, etc), there are also many stages and subtypes within each type of cancer. I wish I could educate you on all of them, but we’d be here forever, and honestly, I don't know enough about other types of cancer because they're so unique. With breast cancer alone there are multiple stages ranging from stage 0 to stage IV (aka MBC), and within those stages are letters to make things even more complicated. For example, you could have stage II b breast cancer based on how big tumors are and how many lymph nodes the cancer has spread to. Breast cancer also has many subtypes including but not limited to, estrogen receptor positive (ER+), progesterone receptor positive (PR+), human epidermal growth factor receptor positive (HER2+), triple positive (meaning you are positive for ER, PR, and HER2) and triple negative.

The cancer I have is stage IV, ER/PR+, HER2- but there's a chance that with time the cancer mutates and becomes something completely different! The reason this matters so much is because it affects what types of treatment you're eligible for. Being strongly ER positive, the cancer in my body feeds off of estrogen, so a lot of the medications I’ve been on are anti-hormone, and that's also why I had my ovaries removed. As I said above, it's all very complex, but this is so important because the more you know about cancer, the more you can understand what people who are diagnosed are going through.

Myth 5: Everyone with cancer is thin, frail, and malnourished

Oftentimes we think of people with cancer as being thin as a rail because an unfortunate side effect of chemo and other meds is gastrointestinal symptoms such as nausea, vomiting, diarrhea, and decreased appetite; and with these things, can come weight loss. So, while this can definitely be true, it is not always the case. People with cancer can actually rapidly gain weight as well. Often this is due to medications, such as steroids. It also can be from hormonal changes. As I mentioned before, the cancer in my body feeds off of estrogen and progesterone, two completely normal hormones in a 29 year old woman. So, in order to stop ER/PR+ cancer from growing, doctors often prescribe medications to shut down your ovaries and put you into medication induced menopause. They may even recommend you have your ovaries removed. This is because your hormone levels are significantly decreased during and after menopause, which will therefore, hopefully prevent cancer growth. If you've ever wondered what hormones do, they do a lot!!! But this is why you may notice that your mom or grandma seemed to gain weight once they were in their 50's-60's and were always having hot flashes. So, just like a normal postmenopausal woman, women with cancer who are younger may be on medications that cause the same symptoms as menopause including weight gain, especially in the midsection.

Myth 6: Young people don't get cancer

I wish I could say this myth was true, but sadly it just isn't the case. Never in my wildest dreams did I expect to received a cancer diagnosis at the age of 26, but I did. And sadly, I have met way too many women under 40 who have been diagnosed as well. It's one of those things you don't realize until it happens to a close family member or friend, and then you start to wonder if it could happen to you as well. It very well could. This is why it is so extremely important to be diligent with breast exams (or prostate exams, colonoscopies etc.) and encourage your loved ones to get checked as well. In case you missed it, I‘m linking a previous blog post I wrote on how to perform breast exams for your convenience. https://www.laurens-healing-hope.com/post/feel-it-on-the-first

Myth 7: Breast cancer is now curable

Thanks to years of research and new developments, breast cancer patients now have much higher survival rates than they once did. Praise God for that! Many people who are diagnosed with lower stages of breast cancer will reach a point where they have no cancer left in their body or are in remission/cured. This, however, does not mean that breast cancer is always curable. In fact, once breast cancer becomes stage IV, or metastatic, it is no longer deemed curable. In other words, there is no guarantee you will ever be in remission. This is why funds for MBC are vital in order to prolong and save the lives of so many of us with MBC. There also is a high chance of recurrence of breast cancer if you've had it before. Unfortunately, this is what often leads to stage IV breast cancer because women think they've been cured and end up having a recurrence that spreads to other parts of the body. Cancer is a nasty, and sneaky disease, always looking for the best environment to grow in, and changing (mutating) to become resistant to medications. It’s pretty much the WORST! Regardless, I will never stop hoping and praying for a cure to be found to save the lives of so many who have been unfairly diagnosed with this terrible disease!

There is so much to learn about breast cancer alone; I am still learning new things everyday.Thankfully, researchers are rapidly coming up with new treatments for cancer, but it can be difficult to keep up with the latest treatments. It is a blessing to those of us with cancer when our loved ones stay informed. Not only will it give you a better grasp of what we’re going through, but you also may be able to protect yourself from this vicious disease called cancer.