Some Facts
(3)
The purpose of telling my story is primarily to give readers a glimpse into the life of a woman with metastatic breast cancer and to sprinkle some education throughout that story; facts that governments and agencies whose role is to encourage screening tests, sadly, leave out and to emphasise that, when quoting survival rate figures, metastatic breast cancer is included in the same category as early breast cancer. This is the main reason that women with metastatic breast cancer are advised by well meaning people that they can beat this disease if they have the right attitude. "Think positive"..."Keep fighting"...."You can beat this".... and on and on. The fact is that Stage IV or metastatic breast cancer cannot be beaten by strength of will, positive thinking or fighting it. Stage IV breast cancer is a killer. The words I was told by my surgeon were simple and straight to the point, "It's incurable but it is treatable" which means that I will be in treatment for the rest of my life. There will be no end to my treatment, not ever, not while I'm living.
It's so important that friends and loved ones understand this because metastatic breast cancer patients have the onerous chore of constantly telling people that their disease has passed the stage that most people are familiar with hearing about. This is addressed in an article entitled "Living with Stage 4: The breast cancer no one understands"
The statistics are well known. In Australia one in eight women will be diagnosed with breast cancer before the age of 85. In 2017 it was estimated that 17,586, or 48 women per day, would be diagnosed. If the cancer is located only in the breast, the relative five year survival rate is 99%. Of those women diagnosed, 61% are diagnosed at this stage. We are told that the average five year survival rate of women diagnosed with breast cancer is 90%.
Bear with me before your eyes glaze over because these figures are deliberately blurred. As mentioned, we're told the average survival rate is 90%, ok? Yet the five year survival rate for women with metastatic breast cancer is 25%. You don't need a calculator to work out that there is an anomaly here. This is why Stage IV or metastatic breast cancer is described as "the hidden disease". The figures are deliberately glossed over to make it seem that we are winning the fight against breast cancer. We're not. At least, not yet.
The answer lies with breast cancer research and that is where government money, grants from large bureaucracies and donations large and small should be going. Women with metastatic breast cancer who are given traditional, pharmaceutical treatment are told their life expectancy is an average of 26 months. Research, thankfully, is currently surging ahead and there are new drugs and treatments, some already in use, some still being trialled and others still at the laboratory stage. Women with Stage IV desperately need these new drugs to buy them time while more drugs, effective drugs, are being made available. As yet, there is no talk of a cure, simply the hope of more time to spend with our loved ones while we pray that our current treatment will continue to work for us.
The way metastatic breast cancer is treated depends on the type of cancer it is. This in itself is an enormous breakthrough. Not long ago breast cancer was seen as one disease; now it's known to be several. Put simply, some breast cancers are hormonal, some are not. This is actually oversimplified but the purpose of this blog is not to delve too deeply but to highlight a few points that are not well publicised.
My breast cancer turned out to be hormone positive, which means that the best treatment is to clear the body of all oestrogen. Oestrogen was feeding my cancer cells and causing them to grow and multiply rapidly. I must admit I was relieved when I was told that chemotherapy treatment would be immediately ruled out. Chemo was what I dreaded most. This confuses people who equate cancer treatment with chemotherapy. If you tell them that no, you're not having chemo you can see the doubt in their eyes. You must be having chemo! You have cancer! What are you thinking? Don't you want to live? When I tell people I will be taking tablets for treatment for the rest of my life, I think they immediately assume that my disease can't be serious but it is. If I stop taking those tablets my cancer will immediately progress and become terminal. Metastatic breast cancer is a killer but not until all treatment options have been tried and failed. Then it becomes terminal.
This is a huge pill to swallow (pardon the pun) and this is where our determination and attitude comes in. We know by now we can't defeat the cancer and that at some stage it will defeat us unless some other disease beats it to it. Thinking positively won't defeat the actual cancer but it can open the door to learning how to live well despite the disease and to find the joy within us ~
If you have any questions or suggestions you may email Leapfrog at: positivetrialsblogspot@gmail.com
The purpose of telling my story is primarily to give readers a glimpse into the life of a woman with metastatic breast cancer and to sprinkle some education throughout that story; facts that governments and agencies whose role is to encourage screening tests, sadly, leave out and to emphasise that, when quoting survival rate figures, metastatic breast cancer is included in the same category as early breast cancer. This is the main reason that women with metastatic breast cancer are advised by well meaning people that they can beat this disease if they have the right attitude. "Think positive"..."Keep fighting"...."You can beat this".... and on and on. The fact is that Stage IV or metastatic breast cancer cannot be beaten by strength of will, positive thinking or fighting it. Stage IV breast cancer is a killer. The words I was told by my surgeon were simple and straight to the point, "It's incurable but it is treatable" which means that I will be in treatment for the rest of my life. There will be no end to my treatment, not ever, not while I'm living.
It's so important that friends and loved ones understand this because metastatic breast cancer patients have the onerous chore of constantly telling people that their disease has passed the stage that most people are familiar with hearing about. This is addressed in an article entitled "Living with Stage 4: The breast cancer no one understands"
The statistics are well known. In Australia one in eight women will be diagnosed with breast cancer before the age of 85. In 2017 it was estimated that 17,586, or 48 women per day, would be diagnosed. If the cancer is located only in the breast, the relative five year survival rate is 99%. Of those women diagnosed, 61% are diagnosed at this stage. We are told that the average five year survival rate of women diagnosed with breast cancer is 90%.
Bear with me before your eyes glaze over because these figures are deliberately blurred. As mentioned, we're told the average survival rate is 90%, ok? Yet the five year survival rate for women with metastatic breast cancer is 25%. You don't need a calculator to work out that there is an anomaly here. This is why Stage IV or metastatic breast cancer is described as "the hidden disease". The figures are deliberately glossed over to make it seem that we are winning the fight against breast cancer. We're not. At least, not yet.
The answer lies with breast cancer research and that is where government money, grants from large bureaucracies and donations large and small should be going. Women with metastatic breast cancer who are given traditional, pharmaceutical treatment are told their life expectancy is an average of 26 months. Research, thankfully, is currently surging ahead and there are new drugs and treatments, some already in use, some still being trialled and others still at the laboratory stage. Women with Stage IV desperately need these new drugs to buy them time while more drugs, effective drugs, are being made available. As yet, there is no talk of a cure, simply the hope of more time to spend with our loved ones while we pray that our current treatment will continue to work for us.
The way metastatic breast cancer is treated depends on the type of cancer it is. This in itself is an enormous breakthrough. Not long ago breast cancer was seen as one disease; now it's known to be several. Put simply, some breast cancers are hormonal, some are not. This is actually oversimplified but the purpose of this blog is not to delve too deeply but to highlight a few points that are not well publicised.
My breast cancer turned out to be hormone positive, which means that the best treatment is to clear the body of all oestrogen. Oestrogen was feeding my cancer cells and causing them to grow and multiply rapidly. I must admit I was relieved when I was told that chemotherapy treatment would be immediately ruled out. Chemo was what I dreaded most. This confuses people who equate cancer treatment with chemotherapy. If you tell them that no, you're not having chemo you can see the doubt in their eyes. You must be having chemo! You have cancer! What are you thinking? Don't you want to live? When I tell people I will be taking tablets for treatment for the rest of my life, I think they immediately assume that my disease can't be serious but it is. If I stop taking those tablets my cancer will immediately progress and become terminal. Metastatic breast cancer is a killer but not until all treatment options have been tried and failed. Then it becomes terminal.
This is a huge pill to swallow (pardon the pun) and this is where our determination and attitude comes in. We know by now we can't defeat the cancer and that at some stage it will defeat us unless some other disease beats it to it. Thinking positively won't defeat the actual cancer but it can open the door to learning how to live well despite the disease and to find the joy within us ~
If you have any questions or suggestions you may email Leapfrog at: positivetrialsblogspot@gmail.com
My heart is both breaking for you and singing your praises. You are a very brave woman, and I pray that your treatment keeps you going long enough for more people to recognise just how courageous you are.
ReplyDeleteMe, thank you for these kind and encouraging words. I have taken them to my heart.
DeleteWonderfully told! Thank you! ❤
ReplyDeleteThank you, Terri.
Delete