For a little over three years, I have lived knowing my existence is threatened by metastatic cancer. From the beginning I wanted nothing more than to live long enough to see each of my children become independent of me. I still want that. But, now there is an added dimension.
For an unknowable amount of time a thought has been entering my mind then fading as fast as it came. Recently, I noticed it lingering. Even more recently, it has decided not to leave at all. Why I noticed its presence, I am not sure. What I am sure about is it is not going away. I want to live for my children, no doubt about it. Additionally, I want to live for me, too!
I enjoy living. Not just living, but being an active participant in it. Of feeling the warmth on my skin from a summer sun, sensing the cool air gliding across my face as the temperature drops before a storm, witnessing flowers change a dull landscape to a beautiful one, engaging in thought-provoking conversations, revisiting experiences of yesterdays, dreaming of tomorrows, having my pets soak-up my blues and restoring some happiness within me, and experiencing the stories of others providing me the human connection that I cannot and do not want to live without.
My brain is on high alert right now about my wanting to live because my scan day is approaching. The date, time and machine locked in place just for me. This Monday I will pull myself out of bed, reluctantly. The firing squad will have their weapons pointing at me. Will the firing of their bullets begin?
As my days drift closer to this next scan, I replay the conversation I had with my radiation oncologist. His words held promise of a longer future for me. Now I live each day hopeful of many tomorrows. I am also cautious—fearful too--that he spoke too optimistically too soon. This is a wicked balancing act for me. Do I lean heavily on the hopeful side or lean more into the hopeless side, so if I fall the fall will hurt less.
That day in October when hope became real, Dr. Z (my human life-preserver) used the term oligometastatic disease—a term I had read but had never heard spoken. Though I couldn’t find a lot of free information about it on the internet, I did find this--Oligometastatic disease is defined as:
From this same article Dr. E. Senkus-Konefka, MD (Medical University of Gadansk, Poland) at the 2016 European Breast Cancer conference said this: Oligometastatic disease is an intermediate biological state between localized and widely metastatic disease. Evidence suggests that OMBC is biologically distinct from polymetastatic disease.
With present day radiation methods, better drugs and surgery for certain candidates, it does seem possible that my situation is leaning in the direction of hopeful instead of hopeless. My fingers are crossed.
For those of you not familiar with oligometastatic (OMBC) disease or are new to learning about metastatic breast cancer, I will attempt to explain why oligometastatic disease could have a better outcome than widespread disease--at least in the way I understand it: Dr. Elaine Schattner wrote in a Forbes article--here--It takes about a billion cells for a tumor to reach the size of one centimeter, less than half an inch, in diameter.--a billion cells, imagine that for a moment. Though some may no longer be alive deep within the tumor, killing even a million cells individually is daunting, wouldn’t you agree? Each time a group of cells breaks-off and travels to a new site forming another tumor with billions and billions of cells means less of a chance of controlling or eliminating them.
In those billions of cancerous cells, many will look similar to each other, but others will not. The longer the cancer cells continue to survive, the more different they can become. For example, my cancer tested positive for the Her2neu receptor on the cancerous cells’ surfaces. That means the generations of cells before they became cancerous had the right amount of receptors to behave normally. Then something went wrong resulting in too many receptors receiving an onslaught of messages causing the cells to behave abnormally. The tissue taken from a lymph node in the middle of my chest for biopsy tested the same as my primary cancer—Her2neu+. Samples from the nodules in my lungs and all other affected lymph nodes were not taken for biopsy so really it was and is a hopeful endeavor that they have/had the same mutation. Since all but one disappeared it is likely that most of the cells resembled my primary tumor—at least enough to respond to treatment. The one nodule in my right lung that was recently radiated did not respond to therapy like the others. It stayed the same size for a long time, almost as if it wasn’t an active tumor. Some cells were killed and some grew until the growing ones outnumbered the ones responding to treatment. Those unresponsive cells to TDM-1 could have been negative for the Her2neu receptors, found a new pathway of proteins to use to get messages to the nucleus or could have been positive for the estrogen receptor fueling its growth—no way to know for sure. I say “could have been” hoping they have all been destroyed by Cyber Knife delivered radiation.
As I went through my stage 1 treatment and during the 3 years before I knew I had metastatic disease, I often inquired about scans for recurrent disease. My goal was to catch it early. I didn’t know then that doctors aren’t interested--at least don’t seem to be--in catching advanced disease in its earliest state. The ongoing belief seems to be once you pass into stage IV land, it is too late.
After chemotherapy and radiation ended, I was allowed two PET scans. Since I was a breast cancer repeater—stage 0 then stage 1--I assume it was approved by insurance to make sure I wasn't already stage IV. Once those scans were clear, my former oncologist saw no reason to undergo any more diagnostic tests. Is this because stage IV has such a bleak outcome so why bother? Is it because he knew my insurance company would not pay for additional testing? With my new knowledge--albeit limited and from a patient's perspective--of oligometastatic disease, I think my desire to catch this disease early before the tumor load was impossible to manage was reasonable. Catching advanced disease earlier and treating aggressively may give some patients long-term control and dare I say the possibility of a cure. I think having scans at year 3 and year 5 after early-stage disease should be considered. Maybe waiting for symptoms to occur will stop being the standard of care after early-stage disease.
The information I found about oligometastatic disease never indicated if remission was only attainable at initial diagnosis or if it could be attained after treatment reducing the disease to this state. The latter is the category in which I fall. I asked Dr. Z about this since my disease didn’t start out that way--my tumors were small but more than 5 were seen on a scan. He didn’t miss a beat as he continued filling the room with his energy and optimism of the success that radiation of this nodule could bring making me feel he was waving a golden ticket in front of me. All I had to do was grab it. But, I was afraid because if I grabbed it, it might be ripped from my hands.
Three weeks later a Physician’s Assistant said when looking at my last scan, “Well, we know it is still there. We just can’t see it.” making my golden ticket appear farther away making it harder to grab, slapping me back to the reality of the hopelessness of my disease. Love her, but grrrrrrrr . . .
I want to pretend none of this has happened to me, but my brain is never quiet. I know too much about this disease. My anxiety increases as the winds of time keep pushing me to that great white machine again asking me to breathe in, breathe out.
What if . . .
What if it isn’t there any longer?
I want to believe in this possibility for me.
For an unknowable amount of time a thought has been entering my mind then fading as fast as it came. Recently, I noticed it lingering. Even more recently, it has decided not to leave at all. Why I noticed its presence, I am not sure. What I am sure about is it is not going away. I want to live for my children, no doubt about it. Additionally, I want to live for me, too!
I enjoy living. Not just living, but being an active participant in it. Of feeling the warmth on my skin from a summer sun, sensing the cool air gliding across my face as the temperature drops before a storm, witnessing flowers change a dull landscape to a beautiful one, engaging in thought-provoking conversations, revisiting experiences of yesterdays, dreaming of tomorrows, having my pets soak-up my blues and restoring some happiness within me, and experiencing the stories of others providing me the human connection that I cannot and do not want to live without.My brain is on high alert right now about my wanting to live because my scan day is approaching. The date, time and machine locked in place just for me. This Monday I will pull myself out of bed, reluctantly. The firing squad will have their weapons pointing at me. Will the firing of their bullets begin?
As my days drift closer to this next scan, I replay the conversation I had with my radiation oncologist. His words held promise of a longer future for me. Now I live each day hopeful of many tomorrows. I am also cautious—fearful too--that he spoke too optimistically too soon. This is a wicked balancing act for me. Do I lean heavily on the hopeful side or lean more into the hopeless side, so if I fall the fall will hurt less.
That day in October when hope became real, Dr. Z (my human life-preserver) used the term oligometastatic disease—a term I had read but had never heard spoken. Though I couldn’t find a lot of free information about it on the internet, I did find this--Oligometastatic disease is defined as:
low-volume metastatic disease with limited number and size of metastatic lesions (up to 5, and not necessarily in the same organ), potentially amenable to local treatment, with the aim of achieving complete remission. Definition from Medscape article by Linda Brookes, MSc, April 28, 2016, Mastectomies: Local Approaches to Breast Cancer. www.medscape.com
From this same article Dr. E. Senkus-Konefka, MD (Medical University of Gadansk, Poland) at the 2016 European Breast Cancer conference said this: Oligometastatic disease is an intermediate biological state between localized and widely metastatic disease. Evidence suggests that OMBC is biologically distinct from polymetastatic disease.
With present day radiation methods, better drugs and surgery for certain candidates, it does seem possible that my situation is leaning in the direction of hopeful instead of hopeless. My fingers are crossed.
For those of you not familiar with oligometastatic (OMBC) disease or are new to learning about metastatic breast cancer, I will attempt to explain why oligometastatic disease could have a better outcome than widespread disease--at least in the way I understand it: Dr. Elaine Schattner wrote in a Forbes article--here--It takes about a billion cells for a tumor to reach the size of one centimeter, less than half an inch, in diameter.--a billion cells, imagine that for a moment. Though some may no longer be alive deep within the tumor, killing even a million cells individually is daunting, wouldn’t you agree? Each time a group of cells breaks-off and travels to a new site forming another tumor with billions and billions of cells means less of a chance of controlling or eliminating them.
In those billions of cancerous cells, many will look similar to each other, but others will not. The longer the cancer cells continue to survive, the more different they can become. For example, my cancer tested positive for the Her2neu receptor on the cancerous cells’ surfaces. That means the generations of cells before they became cancerous had the right amount of receptors to behave normally. Then something went wrong resulting in too many receptors receiving an onslaught of messages causing the cells to behave abnormally. The tissue taken from a lymph node in the middle of my chest for biopsy tested the same as my primary cancer—Her2neu+. Samples from the nodules in my lungs and all other affected lymph nodes were not taken for biopsy so really it was and is a hopeful endeavor that they have/had the same mutation. Since all but one disappeared it is likely that most of the cells resembled my primary tumor—at least enough to respond to treatment. The one nodule in my right lung that was recently radiated did not respond to therapy like the others. It stayed the same size for a long time, almost as if it wasn’t an active tumor. Some cells were killed and some grew until the growing ones outnumbered the ones responding to treatment. Those unresponsive cells to TDM-1 could have been negative for the Her2neu receptors, found a new pathway of proteins to use to get messages to the nucleus or could have been positive for the estrogen receptor fueling its growth—no way to know for sure. I say “could have been” hoping they have all been destroyed by Cyber Knife delivered radiation.
As I went through my stage 1 treatment and during the 3 years before I knew I had metastatic disease, I often inquired about scans for recurrent disease. My goal was to catch it early. I didn’t know then that doctors aren’t interested--at least don’t seem to be--in catching advanced disease in its earliest state. The ongoing belief seems to be once you pass into stage IV land, it is too late.
After chemotherapy and radiation ended, I was allowed two PET scans. Since I was a breast cancer repeater—stage 0 then stage 1--I assume it was approved by insurance to make sure I wasn't already stage IV. Once those scans were clear, my former oncologist saw no reason to undergo any more diagnostic tests. Is this because stage IV has such a bleak outcome so why bother? Is it because he knew my insurance company would not pay for additional testing? With my new knowledge--albeit limited and from a patient's perspective--of oligometastatic disease, I think my desire to catch this disease early before the tumor load was impossible to manage was reasonable. Catching advanced disease earlier and treating aggressively may give some patients long-term control and dare I say the possibility of a cure. I think having scans at year 3 and year 5 after early-stage disease should be considered. Maybe waiting for symptoms to occur will stop being the standard of care after early-stage disease.
The information I found about oligometastatic disease never indicated if remission was only attainable at initial diagnosis or if it could be attained after treatment reducing the disease to this state. The latter is the category in which I fall. I asked Dr. Z about this since my disease didn’t start out that way--my tumors were small but more than 5 were seen on a scan. He didn’t miss a beat as he continued filling the room with his energy and optimism of the success that radiation of this nodule could bring making me feel he was waving a golden ticket in front of me. All I had to do was grab it. But, I was afraid because if I grabbed it, it might be ripped from my hands.
Three weeks later a Physician’s Assistant said when looking at my last scan, “Well, we know it is still there. We just can’t see it.” making my golden ticket appear farther away making it harder to grab, slapping me back to the reality of the hopelessness of my disease. Love her, but grrrrrrrr . . .
I want to pretend none of this has happened to me, but my brain is never quiet. I know too much about this disease. My anxiety increases as the winds of time keep pushing me to that great white machine again asking me to breathe in, breathe out.
What if . . .
What if it isn’t there any longer?
I want to believe in this possibility for me.
Hope - lighter than a feather. Heavier than a mountain.
ReplyDeleteI will be hoping, quietly, for you.
Cathy S.
Your words about hope are profound and beautiful. Thank you, Cathy.
ReplyDeleteAnd--my scan was spectacular! Another 4 months for me to live happily until my next one. I am so relieved.
I am so glad to hear it!!! That is absolutely wonderful!
ReplyDelete