So, as much fun as it was to allow myself a moment of pure indulgence and celebration for the end of a long string of physical hardships and hospitalizations I have had associated with my cancer, my heart remains heavy and I can not fully enjoy these festive feelings knowing that so many of my breast cancer friends will never have a chance to experience relief or respite with this disease. “Don’t Ignore Stage 4” is a popular message that was coined to spread awareness about metastatic breast cancer. Those living with Stage 4 will always be in treatment and do not know how many hospitalizations or surgeries they will have ahead of them. Many times I feel straddled between two worlds of breast cancer – the early stagers (1-3) and those with stage 4 – because there really are huge differences between the two and I have lived in both worlds. Part of the purpose of my blog and foundation has always been to unite everyone while educating people about the differences to increase sensitivity and awareness.
Let me explain: Many people are under the impression that once you go through the typical treatment for breast cancer – whatever that is for each person – a lumpectomy, mastectomy, chemo, and/or radiation – you are done with breast cancer and can go on your merry way. For some people this is true. However, what many people – even those with breast cancer – don’t realize is that 30% of those diagnosed with early stage breast cancer (even Stage 1) will eventually progress to Stage 4 and the cancer will metastasize in another area of their body – even though their breasts have been removed. This can be 6 months, 2, 5, 10, or 20 years after initial diagnosis. Once this happens, the average prognosis remains at just 3 years and you will be in treatment for the rest of your life.
Granted, some people have better odds than others based on the type of breast cancer they have and how early it was detected and treated. My cancer was as advanced as it could be without being considered Stage 4 after my biopsy, so my odds will always be higher than the normal “30%” of progressing to Stage 4 – even after pursuing the most aggressive treatments available – the best I will get to is 40%. So, in addition to living with the knowledge that you are only as good as your next scan or bloodwork, and that the cancer could progress at any time, most “early stage” cancer patients stay on some kind of treatment for 5-10 years which has a variety of side effects. I get bone strengthening shots every 6 months and take hormone therapy meds daily. My side effects include severe joint pain, insomnia, and hot flashes to name just a few. I am therefore always a bit puzzled when someone refers to my cancer as if it were like a flu that is now behind me. I plan to move forward living as healthy a lifestyle as I possibly can now that I hopefully won’t be in the hospital every month for one surgery or another – and I will find a way to integrate the cancer diagnosis and side effects into my life, but I certainly do not see it as something that is behind me. Although I am graciously aware that there is a chance it will not come back, and that I may at some point be done with treatment for this disease – that is a distinct possibility for me – perhaps in 10 years if I’m lucky. I am also painfully aware of the reality of what happens if it does come back.
That brings me to my Stage 4 friends – many of whom were early stage cancer patients at one point. They will never, ever be done with treatment. Even if they currently have No Evidence of Disease (NED) – they are always undergoing treatment and getting regular bloodwork and anxiety provoking scans. Those with a heavy disease burden face every holiday with their families not knowing if it is their last, and every hospital admission not knowing if they will ever return home. I am intimately connected to many people at all stages of this disease but mostly those in the metastatic breast cancer community, and my heart breaks everyday hearing about another amazing person we’ve lost, or another friend suffering from debilitating side effects of their treatment.
I present all this info not to be macabre, but rather to keep people informed about the reality of breast cancer both for me and for those living with Stage 4 -for whom The Cancer Couch is fighting. Please remember these realties as you make choices of where to donate at the end of this year and for the holiday season. We can send someone a lovely card acknowledging a donation you may like to make in someone’s honor or memory, and we have lovely gifts in our shop that make nice presents as well.
Please remember those living with stage 4 this holiday season with prayers, support and spreading awareness. As happy as I am to be home with my family this holiday season, my heart is heavy with the knowledge of all this suffering and I will continue my work with the Cancer Couch to eradicate this disease as soon as I’m able. Please help me and encourage others to do the same. Thank you!