Almost zero civilians understand what it means to say one’s cancer is metastatic. That’s probably a good thing. It means no one you love has dealt with it. It means you’ve never had to assimilate this bit of information into your thinking about everyday life.
However, it can be a pain in the ass for people who have metastatic cancer. We spend a lot of time trying to explain it to people who don’t know or people who are misinformed. There are a lot of people who are misinformed. There is a lot of misinformation surrounding cancer, especially metastatic cancer. If you snorted aloud and said “No shit, Sherlock”, welcome to my club.
At the most simple level, metastatic cancer is cancer that has spread from its primary location to another location. This is not the same as a primary cancer being found in lymph nodes nearest the location. That bumps your staging but it does not count as a secondary location. Cancer cells will travel from the primary tumor, usually through the bloodstream, looking for a friendly environment. They will travel throughout the body until they either find that environment or die.
All metastatic cancers are end stage. The more honest descriptor is terminal. All of them. Almost all cancer deaths are due to the disease metastasizing. For most cancers, the staging level is Stage IV. Brain, spinal, leukemia, and a few other cancers use differing staging levels but for all cancers, metastatic disease is expressed as the final level of the disease.
In earlier staging, many cancers can be treated into remission. Remission means the complete disappearance of the cancer. Remission is not always permanent. We don’t have any reliable statistics on the percentage of remitted cancers going metastatic because CONGRESS but that is another essay for another day.
In Stage IV disease, there is no remission. The cancer can never be cured. Instead, depending on the number of secondary distant locations and the general health of the patient, the disease can be treated as an ongoing, chronic, disease – like mine. Or, treatment is palliative, meaning everyone works to keep the patient as comfortable as possible, for as long as possible.
Sometimes, if one is really lucky, a metastatic patient’s treatment can render them NED. NED stands for ‘No Evidence of Disease’. This doesn’t imply the cancer is gone. It means exactly what it states, the cancer is too small to be detected by the usual medical imaging. The tumors, primary and secondary, are not active. If there are new mets, they aren’t detectable yet.
This is me. I’m NED. I was declared NED roughly a year after being diagnosed with Stage IV Breast Cancer. I was one of the ten to fifteen percent of breast cancer patients who are diagnosed with Stage IV Breast Cancer from the get-go. I never had cancer before. Boom, out of nowhere, I’m forty-one and I walk into a doctor’s office with a terminal illness, no family history, no genetic predisposition, none of the usual risk factors. About thirty percent of women who are diagnosed with an earlier stage breast cancer will have the disease go metastatic. I say about because we have no good statistics on this because CONGRESS, but like I said earlier, another essay.
It isn’t easy being me. I spend more time than I would like explaining this kind of thing to people I’ve only just met. Or not explaining because life is short and I am made awful by the discomfort of others. I hope this helps you.
If you want to know more, and who doesn’t want to spend their Friday lunch break learning more about how cancer kills people, here are some of the resources I googled up for you:
A nifty two minute video on how cancer metastasizes
Good info on staging and the different standards for some cancers
*I would like credit for not geeking out on the etymology of the word ‘metastasis’, but reserve the right to do in the future.
January 8, 2016 at 2:24 pm
This is the most succinct explanations I’ve ever seen. You are a terrific writer and I’m really happy about your NED-ness.
January 11, 2016 at 6:13 pm
Very succinctly put. Can’t wait to read Ch-ch-ch changes. From another of the 6% de novo chicks, NED for 6 months and creeping toward it again.
January 11, 2016 at 6:22 pm
Woo and hoo, my friend. NED all th way.
January 11, 2016 at 9:37 pm
I have had Stage IV Triple Neg breast cancer (I was pronounced “remission” within first 9 months but that changed) for about 3 1/2 years-met in lungs for 2 years and now in brain. We are radiating whole brain and then targeting the remaining bits left in 2 weeks with stereotactic procedure? Lungs are about to get radiation too. I have to say that “fighting” it sometimes seems futile. It just keeps moving and attaching but I have had a great success in the 2 years that we fought off the lung nodules. Used a drug they said would only work (if it worked) for about 6 months and turned it into 2 years. But this brain met stuff scares me-well all of it scares me. I have 5 kids and a wonderful husband. Lots to hold on for. People do not get the met cancer stuff. I am pushing for the day when I am healed (whether it is this side of heaven or not) or being NED myself.
January 11, 2016 at 11:08 pm
Whatever you decide, it will be the right decision. Peace to you.
January 12, 2016 at 1:34 am
well have you seen a great video of lymphocytes taking out cancer cells/tissue it is simply amazing! if you want me to send it to you I will 🙂 firstname.lastname@example.org
January 12, 2016 at 3:37 am
Thank you for your story. I am currently stage lV met breast primary and fighting off the lung nodules, lymp nodes and bones. With 4 kids and a loving husband. Are stories are similar so I ask you what is the name of that drug that worked for 2years? I’m am 32 years old and my youngest is 2. This is still new to me I was only diagnosed 2 months ago. I search the Internet for all sorts of treatment remedies and look for testimonies like yours. Keep up the fight!
January 11, 2016 at 10:16 pm
I’m right there with you. Who knew all these people were dying of breast cancer? I didn’t until I was diagnosed with Stage IV breast cancer in mid 2011. Clueless. Wish I still were! Thankful NED is our friend….for now.
January 11, 2016 at 11:07 pm
NED is fickle friend.
January 12, 2016 at 1:08 pm
You are all so strong and brave. To keep fighting and supporting each oher and helping those of us who are more ignorant. It wasn’t until my friend was diagnosed that I started to dig into this side of cancer. I’m so glad you were declared NED and I pray for you to find comfort and peace.
January 12, 2016 at 8:49 pm
I love this! As much as I can love anything cancer. Diagnosed stage 4 almost two years ago with breast cancer that spread to my liver out of the blue, with no family history just like you. Coming up on 40 now with NED and aware of the miracle each day is. Continuing treatment with chemical menopause and herceptin. I hope we live to tell for another 40 years my friend!! XOXO
January 12, 2016 at 10:24 pm
You could write a book called, “Metastatic Cancer for Dummies.” You truly explained this beast at a level that most (but not all!) people can understand. Thanks!
January 14, 2016 at 2:01 am
9years 9 months of fighting colon cancer, then BAM! Stage 4 breast with bone mets, out of the blue…then 2 months later, recurrent colon cancer… Never a dull moment! Yesterday was the 5 year “cancerversary” of my lumpectomy. Go figure, I’m still alive. Many people around me are sick of these cancers, and the day to day bullshit that goes along with it. 15 years is a long time fighting. A long time trying to explain METS and why I’m not dead yet. A long time answering questions….one chemo to the next…scan anxieties…using a walker…adult diapers…Life is grand with THIS DAMM CANCER. 😉
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