Appreciative but feeling a little stabby at the same time
In honor of "Pink Out Monday," I posted this on my Facebook.
"Some of you know this, but many don't, as I've tried to keep it private. But this is too important not to say. It's been over a year since my breast cancer diagnosis. My treatment went well; there is no evidence of cancer in my body. Many might think I'm cured. That, unfortunately is not the case. I am still at risk for what is called a metastatic recurrence. That means that there is still a risk that some cancer cells slipped past the treatment and will form tumors in other parts of my body, such as the bones, liver, lungs or brain. Anyone who has had Stage 1-3 cancer is at risk. In fact, 20-30% of all people diagnosed with early stage cancer will go on to have a metastatic recurrence. Metastatic breast cancer is the type of breast cancer that kills. Only around 30% of those diagnosed with metastatic breast cancer will still be alive in five years. Metastatic recurrences happen to those who have yearly mammograms, who got their lump checked out as soon as they found it, who had double mastectomies, who did the most aggressive chemotherapy and radiation treatments possible, who took their hormone therapy faithfully. It is not one's fault if they metastasize, it is truly random. This is not talked about enough during October and at Komen events. We need research, not pink recycling bins and giant bra sculptures. So, on what the metastatic breast cancer community has deemed "Pink Out Monday": if you want to donate to defeat breast cancer, please consider donating to research organizations like The Breast Cancer Research Foundation, Metavivor, The Dana Farber Cancer Institute or The Lynn Sage Caner Research Foundation. #metsmonday #bckills #dontignorestageiv"
I got a lot of supportive comments and messages, which I am so appreciative of. But some either missed the point or only got half the point.
"Glad to hear you beat it. Hope ur not in that 20-30%! I will keep u in my prayers, stay strong xxx"
and
"Thanks for posting this and explaining which organizations are doing the best research. Love you and I'm proud to hear you're still fighting for awareness even after you've won your own battle. You're an amazing lady!"
THE POINT WAS that I don't know if I've "beat it" or "won the battle." Maybe I have. Maybe the treatment zapped every single cell. Maybe I still have cells lurking but they will stay dormant and never cause me further problems. But maybe the sleeping cells will wake up someday and form tumors. Or maybe I already have active mets but they are just not at the point of causing any symptoms. I just don't know and while my chances get better as time goes on, I'll never truly know.
I thought my message was as clear as could be but I guess the uncertainty of breast cancer is too much for some people to wrap their heads around.
Comments
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I hear you and have some of the same feelings. I am just starting out. Meeting my surgeon on Thursday for the first time. I have spent a couple weeks reading. It seems like we are very good at the "soft" stuff on cancer Progress in treatment has been made over the years. I do appreciate these things.
I believe that I will always live in cancer's shadow. Not an optimist or pessimist, but a realist. I will always have it in the back of my mind and will be watching and waiting for it. It is now part of my life. I will continue to do the 'right' things, live life to its fullest, and wait. Thanks for the pointers for donating.
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I felt like I had been deceived after my diagnosis and subsequent research. All I ever heard was "mammograms save lives" and "early detection is the key". People would say breast cancer is the cancer to get. I agree that mammograms DO save lives and early detection IS key but that doesn't mean it won't come back. I'm pretty sure by now everybody knows they should get a mammogram and do self breast exams. The money needs to be spent on research not pink marketing.
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Mammograms certainly didn't help me as I was 12 years younger than the recommended mammogram start age when I was diagnosed.
A mammogram may have saved my mother's life by catching her Grade 2 tumor when it was only a 1.1cm lump. I hope it did. But we don't know. Even if the odds are on our side (and I believe that's true even for my Stage III sisters), any invasive breast cancer can metastasize.
I don't want to see more women die. And I don't want to live in fear for years that every pain or blood test will be the beginning of the end for me.
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I was 28 too at diagnosis. When I first found the lump they laughed it off saying its probably a cyst but agreed to do a mammogram just in case. It was stage 3c by then. There is enough awareness of breast cancer in my opinion. The recommended age threw me off too. I did'nt expect in my wildest dreams that it would turn out to be bc. From what I can tell the incidence rate among younger women is on the rise. That seems like a good thing to be aware of. And even if everyone started being more cautious about these things, bc is sneaky enough to evade tests. We need a cure and awareness about the organizations that are pursuing this.
I also felt like the treatment was the easy part. It is dealing with the fear on a daily basis and the thought that I might have to live with it for the rest of my life (however long that is) is the toughest part of this disease. I dont think most people understand this unless they've been there. Even my parents who are as supportive as can be say that I have "won the battle".I hope something comes up someday that makes me feel "safe" again. I am cautiously optimistic.
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beautifully said BadatUserNames. I feel the same way ladies. there isn't enough awareness for younger women and the right diagnostic tools IMO. We're too often swept aside in the ur too young or they r skeptical so the docs wait on it. And the fear..
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