My apologies for keeping the identity feild as Anon. I simply forgot to fill that section in.
My name is Christine and I am from Australia. Pat we Ozzies are notorious for our direct language! My writing style very much reflects my verbal one. As you can imagine, it can make the medicos a touch nervous. They seem accustomed to dealing with shattered women still in shock from their diagnosis and/or surgery. Don't get me wrong - I am as shell shocked as anyone, but I draw a lot of energy, purpose and focus from treating my illness like a masters degree thesis or I think of it as a university essay "problem" where I have to thoroughly reseearch all the variables and come up with amy personally tailored cancer management plan.
I refuse to become weakened by terror or let it so overwhelm me that I had all the reins over to the "experts."
Some of them such as my surgeon I feel are quality through and through, but frankly, others I very much have the impression I am a sausage on a sausage production line. They present me with bog standard "solutions"that are not even the best solutions, they are simply the solutions they have to hand and which they have used so often they are familiar with.
Even specialists have bad hair days or limitations on what they will offer.
I was amazed when I saw Australian research that found specialists would regularly not tell patients about eg., procedures they or their hospital did not offer or procedures they PERCEIVED the patients being unable to afford!
In the US, its a different system. To demonstrate some of the key differences - all mammograms in Australia are all free to women 50+, the ultrasounds are all free, the needle core biopsies are all free, my GP appointments are all free, my great breast surgeon cost me personally $77 - all the rest of the costs were paid for by the public heaslth system, which all taxppayers contribute around 1% of their annual salary to via tax [higher income earners pay slightly more if they fail to obtain private health insurance] my aneathetists was free, my hospital bed was free, blood tests are all free are all other tests, and if I had radiation, genetic testing etc - that is also all free in the publc health system. My Oncologist visit cost me $312 for 15 minutes, but I chose to see a leading Professor as a private patient. I could have seen a lesser light at no cost. It was money well spent, as he was the one who forewarned me about the serious dangers of overtreatment. Hos words prompted me to then read papers from prestigious international Breast Cancer symposiums and medical journals about the dangers of over treating early stage breast cancer so I primed myself with as much hard data as I could in order to deal with the radiation issues.
Cheryl, I am careful not to advocate doing anything dangerous here, but strongly encoraging you to drill down to reveal the real stats about your actual early cancer diagnosis, cross referenced with your personal stats [that can move the initial risk stats up or down] with and without radiation.
Knowing these true risk stats can make a huge significant difference to your overall understanding of your true risk profile and hence a difference to how you understand the options being presented to you by your medical team.
Our kind of diagnosis meant my general ie., based on average women with my type of profile overall risk associated with not having radiation was 8% but when my personal stats were added to further refine that, my stats dropped down to 5%.
Many women with a cancer diagnosis would be happy [or as much as one can be if one has cancer!] with that stat.
My risk only drops from 5% to 2% if I am radiated. It is possible your stats may reflect a similar risk profile to mine.
You must check what the stats means as well.
Yet in my meeting with the Radation Oncologist those very clear stats were NOT presented to me in the clear way I have just presented them to you.
In fast with no stats being revealed to me, I was twice told the team"met"as a group to discuss my case and "recommended" full breast radiation. No mention or reference to my actual stats at all at that stage. This "recommendation"I feel was done/presented to me as a fait acompli ie., to set the scene for me being a sheep and simply going along with what the radiation experts had all agreed amongst themselves I shoud do.
I feel like asking to attend their next group think meeting and tell them face to face why I think they are nuts! They may well think radiating the hell out of my breast is worth gaining an extra 3% reduction in local recurrence over 10 years but crikey asSteveirwin would say,I don't!
Anyway, this is my way of warning you the stats you need to make a rational, informed decision are not simply handed over to you.
You have to keep arguing the point, drilling down to more and more detail before the critical data actually emerges. That is what I mean by pulling teeth with pliers from a bear. Its almost as if these Radiation Oncologists don't want to tell us the bald statistical information we need to make an informed decision about our bodies.
I know many women are too exhausted, overwhelmed or in shock to take my approach [or are not confident in their research skills or shy about querying medical experts advice] which is why I will be recommending to my hopsital that they have a pro forma for each women where we are actually asked what level of information we want - I will opt for cold, hard, impersonal stats ANYDAY over all that soft soaping words and subtle maninipulation to not ask questions, seek stats and/or go with the flow of whatever they recommend. I realise not all of us in this situation want the real picture or in my case brutally honest version , so on the form there could be a sliding scale where the women selects her own setting for information disclosure. Anyway, its an idea that empowers women with this diagnosis as we get to choose or dictate the level of disclosure we want - not let some over worked or jaded Radiation Oncologist decide what he or she thinks we need to know or can cope with!
Many of us also assume when we hear a stat rolling off an Oncologists tongue, it means our risk of death from breast cancer. Red flag! Obviously we want to do all we can to reduce the death stat which may include radiation. Medical staffknow this which is why they are so imprecise about what statistcal outcome they are actually referring to.
When I probed precisely what he was quoting in the stat, I found it was simply the risk of a local recurrence within next 10 years. Huge difference between dying and having a local recurrence within 10 years. Certainly to my mind anyway. Afterall,I havejustbeen through mammograms, ultrasound, 6 needle core biopsies, lumpectomy and sentinel node biopsy. I know whats involved. I will be even more prepared if I need to go down that path again. I am fine with close six montly monitoring so if any leasions appear again, I know I can get through it again.
When I met with my Oncologist I had already crunched my own stats using the histopathology report contents [make sure you insist on having a copy of EVERY document or test run on you, as without these tools you cannot indepedently review this stuff without them] using Adjuvant! This was to assess my risk with and without chemo and hormone and other chemical therapies.
My results were so great I assumed I had made an inputting error but sure enough, a soon as I met with the Oncologost he twirled his chair around to his computer keyboard, tapped in the same data from the same histopathology report and my personal stats and hey presto - came up with the same result I had.
His Adjuvant! report was about the risk with or without of adjuvant therapies he managed which were hormone and drug related. It showed out of 100 women with my specific diagnosis, 5 would die over a 10 year period BUT 4 of the 5 would die from causes other than cancer! People still have car accidents and fatal heart attacks. One woman out of 100 would die from breast cancer and that included not just a locsl recurrence but an ipsilateral recurrence as well as distant recurrence. So that 1/100 mortality could be one of the 5% false negative lymph node women ie., the cancer had in fact gone into her lymph nodes and therefore into her blood stream and been distributed around her body. It also icludes "fresh"cancer.
If he had put me on chemo and or hormone, my risk for dying and or serious morbiduty would be around 6%. BUT it would only give me a 30% of 1% improvment in life expectancy! Thats poisoning myself for around a 0.30% increase in life expectancy while knowing the "treatment" has a 6% risk of causing me a lot of serious problems.
See how the stats are a much more rationale decision making tool than relying on what a doctor says. Forget the words and forget the bed side manner. When I am referred to a specialist now I tell my GP all I care about is competence - I specifically stateI do not want to be sent to someone "sympathetic"or reknown as having a "good bedside manner." Those medicos frankly scare me as it seems their energy goes into emotionally supporting the patient . With my Oncologost I was given three choices by the way - the crusty old professor with no bedside manner but highly competentand who wrote scientific papers and attended breast cancer conferences, a female who was excellent at hand holding women patients distressed with their diagnosis or an in between candidate.I would go for the highly competent with fewer people skills any day.
My attitude is I do not want to be the 1:100 identified by the Oncolgits or the 5:100 identified by the Radiation Oncologist, so I will be doing lots and lots of other things to save myself.
This includes doing all I can to reduce the oestrogen load on my body as its clear high oestrogen levels feed my type of cancer. I had over the past 2 years lost a considerable amount of weight and as oestrogen is stored in fact calls, losing a lot of weight over the past two years esssentially unlocked or lets loose higher levels of circulating eostrogen. So I am currenlty looking into non-radical methods of reducing my oestrogen levels. I am not yet into menopausal despite my age, but early peri-menoausal according to the blood tests called FSH, so I am researching gentle ways to lower oestrogen levels.
Also, I have elevated levels of circulating blood sugar. I am not pre-diabetic but I could head in that direction if I ate masses of white sugar etc. So apart from my diet for the past 2 years which is very healthy, I am looking at other ways of reduicng my circulating blood sugar levels. Higher circulating blood sugar and insulin resistances feed cancer. There is a drug called Mataformin that reducdes insulin resistance. I am currently researching it as well as others and when I feel I have educated myself to a level sufficient to have a useful conversation with my GP, I will be raising this issue and Metaformin as a possible option. My GP may have other options. I am doing this as studies state circulating higher blood sugars can also be associated with higher mortality from breast cancer.
What I am doing is looking through the scientific research from credible scientific and medical journals [I am not doing all New Agey about this and heading off to Mexico for the latest hippie fix] and cross referencing their scienfic findings with me, my lifesyke, my blood results, my histopathology reports and I am about to get my genetic profiling done, which will give me another health risk report.
I can use them all to judge my risks and work on reducing known as many risk factors as possible.Without radiation and without chemo.
Cheryl, if your profile is as close to mine as it appears, we are incredibly fortunate women and my view is the best way for me to continue this good fortune is to work hard to reduce my cancer risks but without doing things that create significantly more risks.
Comment Reply
My apologies for keeping the identity feild as Anon. I simply forgot to fill that section in.
My name is Christine and I am from Australia. Pat we Ozzies are notorious for our direct language! My writing style very much reflects my verbal one. As you can imagine, it can make the medicos a touch nervous. They seem accustomed to dealing with shattered women still in shock from their diagnosis and/or surgery. Don't get me wrong - I am as shell shocked as anyone, but I draw a lot of energy, purpose and focus from treating my illness like a masters degree thesis or I think of it as a university essay "problem" where I have to thoroughly reseearch all the variables and come up with amy personally tailored cancer management plan.
I refuse to become weakened by terror or let it so overwhelm me that I had all the reins over to the "experts."
Some of them such as my surgeon I feel are quality through and through, but frankly, others I very much have the impression I am a sausage on a sausage production line. They present me with bog standard "solutions"that are not even the best solutions, they are simply the solutions they have to hand and which they have used so often they are familiar with.
Even specialists have bad hair days or limitations on what they will offer.
I was amazed when I saw Australian research that found specialists would regularly not tell patients about eg., procedures they or their hospital did not offer or procedures they PERCEIVED the patients being unable to afford!
In the US, its a different system. To demonstrate some of the key differences - all mammograms in Australia are all free to women 50+, the ultrasounds are all free, the needle core biopsies are all free, my GP appointments are all free, my great breast surgeon cost me personally $77 - all the rest of the costs were paid for by the public heaslth system, which all taxppayers contribute around 1% of their annual salary to via tax [higher income earners pay slightly more if they fail to obtain private health insurance] my aneathetists was free, my hospital bed was free, blood tests are all free are all other tests, and if I had radiation, genetic testing etc - that is also all free in the publc health system. My Oncologist visit cost me $312 for 15 minutes, but I chose to see a leading Professor as a private patient. I could have seen a lesser light at no cost. It was money well spent, as he was the one who forewarned me about the serious dangers of overtreatment. Hos words prompted me to then read papers from prestigious international Breast Cancer symposiums and medical journals about the dangers of over treating early stage breast cancer so I primed myself with as much hard data as I could in order to deal with the radiation issues.
Cheryl, I am careful not to advocate doing anything dangerous here, but strongly encoraging you to drill down to reveal the real stats about your actual early cancer diagnosis, cross referenced with your personal stats [that can move the initial risk stats up or down] with and without radiation.
Knowing these true risk stats can make a huge significant difference to your overall understanding of your true risk profile and hence a difference to how you understand the options being presented to you by your medical team.
Our kind of diagnosis meant my general ie., based on average women with my type of profile overall risk associated with not having radiation was 8% but when my personal stats were added to further refine that, my stats dropped down to 5%.
Many women with a cancer diagnosis would be happy [or as much as one can be if one has cancer!] with that stat.
My risk only drops from 5% to 2% if I am radiated. It is possible your stats may reflect a similar risk profile to mine.
You must check what the stats means as well.
Yet in my meeting with the Radation Oncologist those very clear stats were NOT presented to me in the clear way I have just presented them to you.
In fast with no stats being revealed to me, I was twice told the team"met"as a group to discuss my case and "recommended" full breast radiation. No mention or reference to my actual stats at all at that stage. This "recommendation"I feel was done/presented to me as a fait acompli ie., to set the scene for me being a sheep and simply going along with what the radiation experts had all agreed amongst themselves I shoud do.
I feel like asking to attend their next group think meeting and tell them face to face why I think they are nuts! They may well think radiating the hell out of my breast is worth gaining an extra 3% reduction in local recurrence over 10 years but crikey asSteveirwin would say,I don't!
Anyway, this is my way of warning you the stats you need to make a rational, informed decision are not simply handed over to you.
You have to keep arguing the point, drilling down to more and more detail before the critical data actually emerges. That is what I mean by pulling teeth with pliers from a bear. Its almost as if these Radiation Oncologists don't want to tell us the bald statistical information we need to make an informed decision about our bodies.
I know many women are too exhausted, overwhelmed or in shock to take my approach [or are not confident in their research skills or shy about querying medical experts advice] which is why I will be recommending to my hopsital that they have a pro forma for each women where we are actually asked what level of information we want - I will opt for cold, hard, impersonal stats ANYDAY over all that soft soaping words and subtle maninipulation to not ask questions, seek stats and/or go with the flow of whatever they recommend. I realise not all of us in this situation want the real picture or in my case brutally honest version , so on the form there could be a sliding scale where the women selects her own setting for information disclosure. Anyway, its an idea that empowers women with this diagnosis as we get to choose or dictate the level of disclosure we want - not let some over worked or jaded Radiation Oncologist decide what he or she thinks we need to know or can cope with!
Many of us also assume when we hear a stat rolling off an Oncologists tongue, it means our risk of death from breast cancer. Red flag! Obviously we want to do all we can to reduce the death stat which may include radiation. Medical staffknow this which is why they are so imprecise about what statistcal outcome they are actually referring to.
When I probed precisely what he was quoting in the stat, I found it was simply the risk of a local recurrence within next 10 years. Huge difference between dying and having a local recurrence within 10 years. Certainly to my mind anyway. Afterall,I havejustbeen through mammograms, ultrasound, 6 needle core biopsies, lumpectomy and sentinel node biopsy. I know whats involved. I will be even more prepared if I need to go down that path again. I am fine with close six montly monitoring so if any leasions appear again, I know I can get through it again.
When I met with my Oncologist I had already crunched my own stats using the histopathology report contents [make sure you insist on having a copy of EVERY document or test run on you, as without these tools you cannot indepedently review this stuff without them] using Adjuvant! This was to assess my risk with and without chemo and hormone and other chemical therapies.
My results were so great I assumed I had made an inputting error but sure enough, a soon as I met with the Oncologost he twirled his chair around to his computer keyboard, tapped in the same data from the same histopathology report and my personal stats and hey presto - came up with the same result I had.
His Adjuvant! report was about the risk with or without of adjuvant therapies he managed which were hormone and drug related. It showed out of 100 women with my specific diagnosis, 5 would die over a 10 year period BUT 4 of the 5 would die from causes other than cancer! People still have car accidents and fatal heart attacks. One woman out of 100 would die from breast cancer and that included not just a locsl recurrence but an ipsilateral recurrence as well as distant recurrence. So that 1/100 mortality could be one of the 5% false negative lymph node women ie., the cancer had in fact gone into her lymph nodes and therefore into her blood stream and been distributed around her body. It also icludes "fresh"cancer.
If he had put me on chemo and or hormone, my risk for dying and or serious morbiduty would be around 6%. BUT it would only give me a 30% of 1% improvment in life expectancy! Thats poisoning myself for around a 0.30% increase in life expectancy while knowing the "treatment" has a 6% risk of causing me a lot of serious problems.
See how the stats are a much more rationale decision making tool than relying on what a doctor says. Forget the words and forget the bed side manner. When I am referred to a specialist now I tell my GP all I care about is competence - I specifically stateI do not want to be sent to someone "sympathetic"or reknown as having a "good bedside manner." Those medicos frankly scare me as it seems their energy goes into emotionally supporting the patient . With my Oncologost I was given three choices by the way - the crusty old professor with no bedside manner but highly competentand who wrote scientific papers and attended breast cancer conferences, a female who was excellent at hand holding women patients distressed with their diagnosis or an in between candidate.I would go for the highly competent with fewer people skills any day.
My attitude is I do not want to be the 1:100 identified by the Oncolgits or the 5:100 identified by the Radiation Oncologist, so I will be doing lots and lots of other things to save myself.
This includes doing all I can to reduce the oestrogen load on my body as its clear high oestrogen levels feed my type of cancer. I had over the past 2 years lost a considerable amount of weight and as oestrogen is stored in fact calls, losing a lot of weight over the past two years esssentially unlocked or lets loose higher levels of circulating eostrogen. So I am currenlty looking into non-radical methods of reducing my oestrogen levels. I am not yet into menopausal despite my age, but early peri-menoausal according to the blood tests called FSH, so I am researching gentle ways to lower oestrogen levels.
June 20, 2010 - 4:09amAlso, I have elevated levels of circulating blood sugar. I am not pre-diabetic but I could head in that direction if I ate masses of white sugar etc. So apart from my diet for the past 2 years which is very healthy, I am looking at other ways of reduicng my circulating blood sugar levels. Higher circulating blood sugar and insulin resistances feed cancer. There is a drug called Mataformin that reducdes insulin resistance. I am currently researching it as well as others and when I feel I have educated myself to a level sufficient to have a useful conversation with my GP, I will be raising this issue and Metaformin as a possible option. My GP may have other options. I am doing this as studies state circulating higher blood sugars can also be associated with higher mortality from breast cancer.
What I am doing is looking through the scientific research from credible scientific and medical journals [I am not doing all New Agey about this and heading off to Mexico for the latest hippie fix] and cross referencing their scienfic findings with me, my lifesyke, my blood results, my histopathology reports and I am about to get my genetic profiling done, which will give me another health risk report.
I can use them all to judge my risks and work on reducing known as many risk factors as possible.Without radiation and without chemo.
Cheryl, if your profile is as close to mine as it appears, we are incredibly fortunate women and my view is the best way for me to continue this good fortune is to work hard to reduce my cancer risks but without doing things that create significantly more risks.
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