Nobody told me...
In the last week of September in 1999, I was first diagnosed with breast cancer. After 8 months of chemo & 8 years of Tamoxifen, I thought I was done with that battle. Last fall, I began to have severe joint pain. 6 months of going from one specialist to another found no diagnosis Then in a routine scan for an unrelated problem, it was discovered that my breast cancer had metastasized to my bones. This after 25 years. Nobody told me the same cancer could return after that long. I felt safe after 10-15 years. Even my oncologist was shocked. I did everything I was supposed to do, including a bilateral mastectomy. I was told my "numbers" were great & nothing more was required. Somehow, somewhere a cancer cell escaped & hid away for all this time, even though my lymph nodes were supposedly clear. I have mixed emotions. I am grateful for the past 25 years. I've lived a good life, have a great support system of friends & a son-in-law & a daughter-in-law as well as 5 grandchildren I didn't have all those years ago, but I probably will never see those grandchildren grow up & get out on their own or hold my first great-grandchild. The fight goes on…
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cekmcc,
I know this must be a great shock and beyond upsetting.
Yes, bc can recur at any time, even decades after initial treatment. It is not super common after so many years but can and does happen even if everything looks like it’s going your way. Sadly, there is also no way to predict who will recur and who will not. And yes, all it takes is for a single stray cell to wake up and become active. Despite chemo and rads we know that not every cancer cell can be eradicated. Breast cancer cells can travel through the bloodstream, not just the lymphatic system as some believe.I was dx’ed with a single bone met 13 years ago (I am not typical). Only my older dd was married at the time. Fast forward 13 years and both daughters are married and I have 3 grandchildren. The oldest is 12, and my dd found out she was pregnant 3 months after my dx (I was de novo stage IV). My point? I had no way of knowing the course of my disease and although there is no explanation for why I’ve done so well, you also have no way of knowing how things will go.
I can make neither predictions nor guarantees but I can tell you that I see more and more stage IV patients surviving for longer periods of time than they thought and more treatments keep coming down the pipeline. I am not trying to paint a rosy picture of a serious disease but just want you to understand that this is not an immediate death sentence and you may be surprised by the years you might have ahead of you. Take care1 -
Thank you for your encouragement. 💗
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I was dx w/MBC almost 30 years after my original dx at age 34. I ended up going to the ER for a cough that hadn’t cleared up despite trying 2 different antibiotics. CT showed I had pleural effusion and pathology of fluid showed MBC. My husband who was a practicing OB/GYN at the time, had never considered the possibility that I could have MBC. My oncologist believes I have a very slow growing cancer; I have been stable on my first line of treatment for 5 years. My take on cancer from first dx is that the most consistent thing about cancer is that it is inconsistent. And as such, our medical providers are at a loss to explain us outliers. Cekmcc - you do not have an expiration date stamped somewhere on your body. I hope you will have many years to enjoy time with the grand kiddos. I’m planning that for me…..
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Thank you.
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@cekmcc This diagnosis is so hard to get your mind around at the beginning. I will give you the hopeful news that just on this board alone, there are over 120 regular participants who have lived longer than five years, many of those over 7, and a pretty good number of those over 10. Many new treatments weren't available even five years ago so this number will surely grow. I'm a grandmother myself, and although of course at some point we all must say goodbye, I hope to see how my grandkids turn out.
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hope u will be healthy again.
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As others have shared, give yourself time and compassion to be with the news and the new reality of the body as it changes and ages. Love that we don’t come prestamped with an expiration date, lol . Though we all are here for a limited time, no matter if there is disease or not. That’s just the cycle of life we are all traveling. We just happen to know that our bodies need more healing and attention with medical and integrative methods to be whole and enjoy our lives as best as we can for as long as we can. Someone in a recent zoom call on BCO said she made time to worry, so it was scheduled and then finished, and that was it. Put it on her her calendar! Thought that was great.
My husband and I are always shrugging together.. lol and saying ..the body! We can just meet ourselves where we are, and practice kindness and acceptance for ourselves and others. So many of us in this boat of recurrence as MBC. And here we are ❤️sharing, living, loving, laughing, crying all human doings and being. You’ll find many on this forum in a variety of different conversations, it’s very supportive and lovely community.Living with uncertainty is both the challenge and the gift I think. It helps me enormously to not know and live not knowing, in a funny way it’s freeing. I am left to create the joy and be more present right now..and as much as I am a planner , it is a really good practice to not live projecting outcomes that you have no basis for. Doesn’t mean you don’t face reality or feel what you feel, not at all. But you don’t build up a narrative of doom in the mind. Cause you don’t know. One of my favorite book is You can conquer cancer by Ian Gawler, and he says accept the diagnosis but not the prognosis. And take care of your mind, and what it imagines . And laugh a lot….
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