One thing that cancer patients deal with a lot is opinions. And we are also experts in hearing, processing, and dismissing common catch phrases that either will inspire us to morph into the Incredible Hulk in frustration, have us in the fetal position on our beds in a puddle of tears, or just simply leave our mouth aghast in shock, horror or both.
Here are some common things that are said to cancer patients and sometimes even said to each other that need to just simply be stopped. These are things I am conscientiously trying not to say myself knowing very well how it feels to be on the receiving end.
“You could be hit by lightening or a Bus tomorrow, you never know” “Everyone is in the process of dying”– Anybody look up the statistics lately of getting hit by a bus or hit by lightening? The odds are extremely small. Look up the statistics of dying from Stage 4 cancer when you receive the diagnosis. It’s a much different and grimer reality. The bus that is going to hit me has left the station and has been hijacked by a madman (just imagine Dennis Hopper and the movie Speed) who has put a brick on the gas pedal and has declared any speed below warp speed is unacceptable. I can buy some time, but that bus is going to hit me and I don’t have one in a million odds that it will. I have 100% certainty that it will. I saw 1 Stage 4 sister put it like this:
“I’m standing close to the tracks and if something were to happen I could get hit by a train.”
“I’m chained to the tracks with no hope of escape and can see the train coming.”
Big Difference between the two realities she said. And I agree. I know pretty much whats going to kill me and its surreal to know and live with every day.
“The statistics for Stage 4 cancer are old, don’t go by them” – While its true, their are outliers out there, I’ve run into several, its not the norm or how it will play out for most with Stage IV. There just aren’t anywhere near enough women outliers out living with good QOL to begin labeling this stage of breast cancer ‘chronic’. New treatments are measuring successes in months. MONTHS of disease free progression, not years. Telling someone they could live decades I believe gives false hope and to me diminishes the seriousness of the disease, as if it is something chronic like thyroid disease, diabetes, or asthma. How can we get Metastatic breast cancer the funding and awareness it needs and attempt to save lives by advocating for focus to be put on a cure if we don’t emphasize and be honest about what it is. A terminal illness for which there is no cure. It is the breast cancer that kills. The median survival still has not changed which is 2 to 3 years and the 5 year survival is still at 20%, some have revised to 27%, some have it as low as 18%, but even if we took the higher statistic, that’s still 73% dead in 5 years. 600,000 women die of MBC/Stage 4 breast cancer around the world every year. 45,000 in the United States every year. Let us not pink wash the statistics we have based on information SEER refuses to update or track correctly. Many things factor in with the length of time one has at Stage 4 but the seriousness of the disease needs to be underscored. Realism mixed with hope is a good recipe. Understanding your diagnosis and its prognosis with room to be surprised is a formula that works well for me. It keeps things real. This is not said to crush hope’s or dreams but rather help you understand your diagnosis, live with its reality, settle it in your heart (acceptance) and then take it from there. Push past it and live as full as you can with it.
“Bone Mets isn’t so bad and it isn’t terminal”. Yes it is. Bone mets gets the easy street treatment sometimes by people who downplay or dismiss its seriousness. Many are quick to tell you “Oh well at least its not a organ” or “oh that’s the good kind of mets!” It is listed with the other Mets in Stage 4 cancer and has the same outcome as other mets with Stage 4 cancer. It’s terminal, but you may live longer than someone who has metastasis to a soft tissue organ such as liver, lungs, and brain. Your skeleton is an organ. Mets in the spine can travel to your brain or spinal fluid or bone marrow which is very bad. Hypercalcemia of bones breaking down from cancer within them is deadly. Bone mets can be slower growing and be better in terms of prognosis of giving you more time, but its still a Stage 4 diagnosis. Bone mets are also very painful, I speak from experience. I am not being “grim” or descriptive to be scary or to take away anyone’s hope but to be honest. Too many people think you will live a normal lifetime with bone mets “because its not so bad” they say or others tell them that. Stage 4 is Stage 4. Saying “Oh, its just in the bones” deminutizes and dismisses the seriousness of the diagnosis. Let’s not have Stage 4 cancer elite-ism – my mets are worse than your mets type thing. Let’s support ALL of us with Stage 4 breast cancer. There are no luxury boxes in the game of Stage 4.
“I knew someone who had cancer and they lived 20 years or I knew someone who cancer and had surgery and have been cancer free for 10 years etc”. These outcomes are not the norm and some of the claims are questionable. People like Chris beat Cancer etc who tout their cure forget to mention they had surgery. In the case of colon cancer which he had he had surgery which removed everything. But he doesn’t credit his surgery he briefly mentions, he names his lifestyle as his cure. Which isn’t true. Look at many of the advancers of different cancer curing protocols. They either had very limited metastasis, had conventional treatment of some kind they exceptionally responded to that they later followed up with lifestyle changes and/or they had surgery that removed their cancer entirely. Many outliers have limited tumor burden (spots of metastasis), are exceptional responders to treatment, have treatment naive cancer (de novo), have certain cancer markers (Her2+), have had big gaps in time between recurrences or metastasis, or were able to have their cancer completely removed with surgery. Sometimes these cases can give the impression that these people did everything right and they were cured, so those who don’t medically follow those footsteps must have done something wrong. This is very destructive.
“You need to be positive, keep up the fight, don’t let it win, you can beat this, you beat it before you will beat this again, you’ve got this, you’ll be fine”
Telling someone that their prognostic outcome is based upon how well they emotionally handle something is an unbelievable burden to place on someone’s shoulders. Some of the most positive people I know died and died quickly of this disease. Women (and men) who have to engage in physical and emotional combat with this beast of a disease every single day get battle worn and fatigued. We are seasoned veterans in the art of true tolerance. Tolerating side effects, pain, sickness, and things other people would run out of the room screaming if they had to face. We had no part in getting this disease, we have no part in reasoning with this disease. We make the best of what we have and we thrive in that way. Not because we are “fighting” “beating” or blinking to death the cancer cells with positivity. But because we choose to get up everyday in spite of it all.
“Have you read, have you tried, you should consult, have you signed up for, have you joined, have you heard about, i was reading about, have you researched…”
Many cancer patients are highly informed. Many of us can point to every location of where our cancer is located, give you the layman’s and formal name for each location on the human body, along with how big it is, if there was uptake or not etc. Some of us choose not to dive into that much detail and just concentrate on just living. Putting too many “samples” on our plate can be overwhelming as we are asked to try this and try that. Let us initiate those discussions and back off if we hint that we aren’t interested or not ready. Having cancer is a balance of being informed and engaged in our care and treatment and also not immersing ourselves too much that that we forget to do the #1 thing our treatments put in place for us allow for us to do. Live.
This blog post kicks off a mini cancer advocacy blog series this month “Life on the Lopside” leading up to October which is the month of so much pink you could puke (Breast Cancer Awareness Month) which I despise. A lot of women (and men) do, especially in the Metastatic community to which I belong. Hoping to encourage the ditching of the pink ribbon cookies, lemonade, and cringeworthy catch phrases sometimes served and displayed just outside rooms in the month of October where biopsies are being done and lives ( of both women AND men ) are forever altered and emphasis be put on researching a cure for Stage 4. Because if you cure Stage 4 breast cancer, 30% of those early stage for the disease will not ever have to hear “It’s come back, It’s Metastatic”. I will try to do a balance of critique and what would be helpful going forward. I’m hoping I can dedicate energy to this, I’ve been unbelievably fatigued this past month, something I’m bring up at MO visit today as well as dose reduction. I’ve not really dipped my toe in advocacy per say, I’ve mostly just talked about having the disease. Recent progression to Stage 4 of another one of my original chemo sisters (one of my first loves in this cancer mess) a few weeks ago along with threat to another has nearly ripped me apart and has lit my fire. I talk generally about that group of ladies I have been connected to since my initial BC diagnosis here: https://lifeandirises.home.blog/2020/07/11/making-lemonade-out-of-lemons/
I don’t want another woman I love to have hear the words she did, that I did. I’m kinda nervous entering this terrain, but will learn to perfect rattling cages.
Life and Irises 