The difference
Rant. Sometimes I hear from people who tell me about others who have "the exact same cancer" as mine who are more energetic, or doing better than I am.
That is really great for them. But.
1) The odds of them having "the exact same" cancer as mine is not high. This is one reason why metastatic breast cancer is so difficult to treat. Some of us are estrogen positive. Some of us are negative. Some of us have ductal carcinoma. Some of us have lobular carcinoma. Medullary. Mucinous. Tubular. Metaplastic. Papilary. Inflammatory.
Plus there are subtypes.
Hormone-receptor positive. HER2-positive. Triple negative. HER2-negative.
Metastatic breast cancer is breast cancer that was originally breast cancer but has spread to different areas. The most common areas are the sternum, the spine, the liver, or the brain. But, it can go anywhere via your lymph system.
Some of us test positive for the BRCA mutation. In fact, for a very long time it was thought that if you ever had metastatic breast cancer, you were positive. Until people like me started showing up. I tested negative. So did two of my sisters. So, don't breathe a sigh of relief if you test negative. It may just mean that they haven't found our trigger yet.
One of the reasons that metastatic breast cancer is so hard to treat is because we are all so different. And each person reacts differently to treatment. The only real glimmer of success we have seen in a long time is Ibrance. There have been a lot of stories of Ibrance being successful in younger women. Some can take it for years with their cancer going into remission. But, that has mostly been in women under the age of 40.
That wasn't me. I lasted for four months on it before it stopped working.
Some people find that their digestive system gets out of whack. They have diarrhea or constipation or both. Some people throw up. Some have body aches that are so intense that they are nearly indescribable. Some get neuropathy. Hand and foot blisters. Mouth sores.
About the only thing that everyone seems to get is fatigue.
I know two women who have kept their full time jobs throughout their treatment. Both are younger, in their 30's. And one had no choice. If she quit her job, she lost her insurance. Plus. She lives alone. She needs that livelihood. She tells stories of falling asleep at her desk, her supervisor warning her that this better not happen again.
I am lucky. Well, lucky as one can be with this disease. I have disability. She had only worked for 2 years before her cancer came back, so her disability check would have been a pittance. I also have a spouse who works and has me on her medical insurance. It is our deep hope that Trump doesn't fuck that up, too.
But, I could not work if I had to do so. I can barely drive myself to doctor appointments. I think back on my job. All those plates that I kept spinning in the air. All the multi tasking. I could not do that now. Now, I still read books, but I often have to read paragraphs twice. My chemo brain causes me to feel dull and weak brained. All that lightning fast thinking that I used to do? Now, it is slow and sure. I am no longer that woman who was fast on her feet. I am still good at research, it is my forte, but I am slow and plodding. It is frustrating.
We are not the same, we women with metastatic breast cancer. In my support group, there is not one woman who is treated with exactly the same medication that I am given. I am older, for one reason. I also have other ailments. Rheumatoid arthritis. RA meds do not play well with several cancer meds so I can't take them. I also have pre-lupus. This causes my immune system to misunderstand everything. Kind of like having a dysfunctional body. My immune system thinks that it must attack everything. When I am taking chemo that already does this, we are talking about a physical shit storm. This is much different from the young 30 something who can try anything and everything.
I was sitting in group the other day and an older woman who seldom speaks decided to talk, to ask a question.
"Do any of you sit around and wonder how bad your death will be?" she asked. "Because it keeps me up at night."
We all came together. Yes. All the time.
It is kind of like how we deal with those who ask us how we are feeling or who comment on how great we look.
"I feel pretty good. I mean, there is this terrorist who follows me around wherever I go, but other than that....I'm good!"
We are all different, but some things never change.
That is really great for them. But.
1) The odds of them having "the exact same" cancer as mine is not high. This is one reason why metastatic breast cancer is so difficult to treat. Some of us are estrogen positive. Some of us are negative. Some of us have ductal carcinoma. Some of us have lobular carcinoma. Medullary. Mucinous. Tubular. Metaplastic. Papilary. Inflammatory.
Plus there are subtypes.
Hormone-receptor positive. HER2-positive. Triple negative. HER2-negative.
Metastatic breast cancer is breast cancer that was originally breast cancer but has spread to different areas. The most common areas are the sternum, the spine, the liver, or the brain. But, it can go anywhere via your lymph system.
Some of us test positive for the BRCA mutation. In fact, for a very long time it was thought that if you ever had metastatic breast cancer, you were positive. Until people like me started showing up. I tested negative. So did two of my sisters. So, don't breathe a sigh of relief if you test negative. It may just mean that they haven't found our trigger yet.
One of the reasons that metastatic breast cancer is so hard to treat is because we are all so different. And each person reacts differently to treatment. The only real glimmer of success we have seen in a long time is Ibrance. There have been a lot of stories of Ibrance being successful in younger women. Some can take it for years with their cancer going into remission. But, that has mostly been in women under the age of 40.
That wasn't me. I lasted for four months on it before it stopped working.
Some people find that their digestive system gets out of whack. They have diarrhea or constipation or both. Some people throw up. Some have body aches that are so intense that they are nearly indescribable. Some get neuropathy. Hand and foot blisters. Mouth sores.
About the only thing that everyone seems to get is fatigue.
I know two women who have kept their full time jobs throughout their treatment. Both are younger, in their 30's. And one had no choice. If she quit her job, she lost her insurance. Plus. She lives alone. She needs that livelihood. She tells stories of falling asleep at her desk, her supervisor warning her that this better not happen again.
I am lucky. Well, lucky as one can be with this disease. I have disability. She had only worked for 2 years before her cancer came back, so her disability check would have been a pittance. I also have a spouse who works and has me on her medical insurance. It is our deep hope that Trump doesn't fuck that up, too.
But, I could not work if I had to do so. I can barely drive myself to doctor appointments. I think back on my job. All those plates that I kept spinning in the air. All the multi tasking. I could not do that now. Now, I still read books, but I often have to read paragraphs twice. My chemo brain causes me to feel dull and weak brained. All that lightning fast thinking that I used to do? Now, it is slow and sure. I am no longer that woman who was fast on her feet. I am still good at research, it is my forte, but I am slow and plodding. It is frustrating.
We are not the same, we women with metastatic breast cancer. In my support group, there is not one woman who is treated with exactly the same medication that I am given. I am older, for one reason. I also have other ailments. Rheumatoid arthritis. RA meds do not play well with several cancer meds so I can't take them. I also have pre-lupus. This causes my immune system to misunderstand everything. Kind of like having a dysfunctional body. My immune system thinks that it must attack everything. When I am taking chemo that already does this, we are talking about a physical shit storm. This is much different from the young 30 something who can try anything and everything.
I was sitting in group the other day and an older woman who seldom speaks decided to talk, to ask a question.
"Do any of you sit around and wonder how bad your death will be?" she asked. "Because it keeps me up at night."
We all came together. Yes. All the time.
It is kind of like how we deal with those who ask us how we are feeling or who comment on how great we look.
"I feel pretty good. I mean, there is this terrorist who follows me around wherever I go, but other than that....I'm good!"
We are all different, but some things never change.
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