I grow angrier and angrier each year during PINKtober. Why? We’ll be flooded with commercials and email campaigns of women wearing pink tutus, toothy smiles, and cheers nationwide. Breast cancer is glamourized to look pretty, easy, and fun. No wonder other cancers hate us.
The media attention breast cancer gets is HUGE. The funding for it is HUGE. The awareness part is bullshit. Yep, I said BULLSHIT! A lot of that money raised from the tons of “walks for the cure” is nowhere to be seen. The bulk of these organization are funneling millions of dollars…into their pockets!
The wool that was once over my eyes is gone. Why? Because I’ve lost countless friends from metastatic breast cancer. I’m acutely aware that I could still get metastatic cancer. I’m not “cured.” I will be getting scans every six months for 10 years!
I had Stage IIA Invasive Lobular in the left breast. About 10% of all invasive breast cancers are invasive lobular carcinomas. It is still considered rare because 80% are invasive ductal carcinomas. Let me give you some information on this type because it is not common.
Here’s an overview from the Mayo Clinic’s website:
Invasive lobular carcinoma is a type of breast cancer that begins in the milk-producing glands (lobules) of the breast.
Invasive cancer means the cancer cells have broken out of the lobule where they began and have the potential to spread to the lymph nodes and other areas of the body.
Invasive lobular carcinoma makes up a small portion of all breast cancers. The most common type of breast cancer begins in the breast ducts (invasive ductal carcinoma).
I’ve realized many women and men are under the assumption that if you have a mastectomy, that you’ll never get a recurrence or metastatic cancer. I’m going to take this time to educate and give some definitions for those who may not be aware or too scared to ask.
Here are the Types of Recurrent Cancer and definition of Metastatic Cancer from the National Cancer Institute at the National Institute of Health’s website.
- Local recurrence means that the cancer is in the same place as the original cancer or very close to it.
- Regional recurrence means that the tumor has grown into lymph nodes or tissues near the original cancer.
- Distant recurrence means the cancer has spread to organs or tissues far from the original cancer. When cancer spreads to a distant place in the body, it is called metastasis or metastatic cancer. When cancer spreads, it is still the same type of cancer. For example, if you had colon cancer, it may come back in your liver. But, the cancer is still called colon cancer.
- Metastatic Cancermeans the spread of cancer cells from the place where they first formed to another part of the body. In metastasis, cancer cells break away from the original (primary) tumor, travel through the blood or lymph system, and form a new tumor in other organs or tissues of the body. The new, metastatic tumor is the same type of cancer as the primary tumor. For example, if breast cancer spreads to the lung, the cancer cells in the lung are breast cancer cells, not lung cancer cells.
Despite how the media glamourizes breast cancer, I still love wearing pink, tutus, tiaras, butterfly wings and feather boas. Why? These items were ALL in my closet before my breast cancer diagnosis. I’ve always been a tad extra and a Nut-Meg. When I look at those items in my closet, I don’t associate breast cancer with them except for two of the six tiaras I have. I bought one a year after I was declared NED (no evidence of disease) and the other for my birthday last year because I wanted one even bigger and heavier to celebrate that I’m still above ground.
Breast cancer has taken away so much. It’s a daily struggle to reclaim pieces of myself. My body will never, ever be the same. I don’t know how much longer I can keep pushing through the chronic pain.
I remember how financially giving so many were when I was initially diagnosed. I can’t tell you what an enormous help their generosity was for me, especially as a single woman, but the medical bills don’t stop once the cancer has been removed.
I didn’t think I would get diagnosed with cancer at 39 years old only two months after my birthday.
I didn’t realize how expensive getting scans (diagnostic mammogram with either an ultrasound or MRI) every six months would be thanks to super high deductibles.
I didn’t expect to have additional surgeries afterward.
I didn’t expect that I would be intolerant of every type of post-cancer medication to help prevent recurrence.
I didn’t expect to have permanent chemo induced peripheral neuropathy in my hands and feet to the point I have a permanent handicap sign because I can’t walk far anymore.
I didn’t expect that all these surgeries would trigger fibromyalgia and have to live with severe chronic pain every blasted day.
I didn’t expect I would still be single and can’t even think about dating or being intimate because I was medically induced into menopause at 40 years old.
I didn’t expect to long for children until the choice was taken away from me and had to get a hysterectomy and salpingo oophorectomy at 40 years old.
I didn’t expect to develop a herniated disc and slight tear near the nerve in my lower back which causes excruciating back pain on my left side.
Oh, and let’s not forget the Neural Foraminal Stenosis in that same area. Fabulous. According to the Atlantic Spine Center, it refers to the narrowing of the intervertebral foramen, a small hole through which nerves exit our spinal canal and travel through our body. Neural is defined as having to do with nerve cells or relating to a nerve and is often added to the condition’s name.
I have the back of a dang mummy. See my latest video talking about it where I get quite salty about my latest visit to the neurologist. Salty Instagram Video
I didn’t expect to have these continuous cognitive issues (chemo brain). Though I will say in 2020, it has vastly improved but still there. It only took 4 1/2 years but who’s counting?!
Most of all, I didn’t expect to meet so many beautiful fellow warriors who have since DIED in the past four years.
For me, PINKtober isn’t reality. It’s made to be cute, sexy, fun, and money grabbing.
The reality is we need to know the cause of why so many early stager’s eventually get metastatic cancer. Why are so many women and men being diagnosed under 40? Why are so many with zero family history of cancer getting breast cancer? And, why aren’t there better treatment options for active and post treatment? I often say it wasn’t the cancer that almost killed me, it was the harsh treatments.
We need more funding for research for lobular and metastatic cancer.
Until next time,
This post originally appeared on Life on the Cancer Train on October 18, 2020. It is republished with permission.