Last week or so the British Parliament debated whether additional care is needed for patients undergoing a second breast cancer diagnosis. Why should this be any different than any other cancer diagnosis?
As far as I am concerned, if a patient is diagnosed with a second cancer, it doesn't matter if its the same cancer or a new cancer, the patient needs to have access to all available resources. Why should this even be a discussion? Well it seems that in the UK National Health Service, the patient with the secondary cancer doesn't usually get access to the clinical nurse specialist that was available at their first diagnosis.
When you are faced with a big diagnosis such as cancer, it is important to have as many resources as possible. And it should be up to the patient to decide which resources they want to utilize - and that may be later as opposed to sooner. however the resources should be there. Please do not make the decision for the patient and let them make it for themselves.
Showing posts with label cancer diagnosis. Show all posts
Showing posts with label cancer diagnosis. Show all posts
Tuesday, December 1, 2015
Tuesday, September 29, 2015
How idiotic, insensitive, and just plain dumb!
I read this article and the first words pissed me off:
'“Today, we are curing about 80 percent of all breast cancer. That is an incredible advance to 20 years ago when we were curing, at best, about 50 percent,”“Today, we are curing about 80 percent of all breast cancer. That is an incredible advance to 20 years ago when we were curing, at best, about 50 percent,”...'
Why is the word cure being used in conjuction with breast cancer? There is no cure! (Insert expletive here). At first I questioned his percentages and it is true that just over 200,000 cases of breast cancer are diagnosed in the US each year and just about 40,000 women will die from it. 40,000 is 20% of 200,000. I don't think the other 160,000 consider themselves cured, more like they spend their lives in watchful waiting. And a woman diagnosed with breast cancer can die of any number of other causes besides breast cancer before their disease becomes terminal.
'“What we are left with is this 20 percent where clinic-based drugs are not adequate, but we mustn’t burden the 80 percent for whom today’s standard is adequate, giving those patients unnecessary and experimental treatments,” he said.'
Really? Can you tell me which of the women with diagnosed with breast cancer are in the 20% or the 80%? We have some ways of telling but many women get breast cancer who have no know risk factors. Like me.
Here's more:
'In years past, treatment of breast cancer was limited to surgery, chemotherapy and radiation. Today, drugs are being used to rid the body of cancer cells before surgery becomes an option.
“That method has several effects. One, you can get away with lesser forms of surgery - lumpectomy vs. mastectomy. More interestingly, you can track the effectiveness of the drug by observing what is going on in the breast. Maybe in the future we will be able to track effectiveness by looking at what is happening in the blood,” Ellis said.
Very few people today die from cancer in the breast, he noted.
“The problem becomes the cancerous cells that have left the breast. They are more difficult to track. If you could chase those cells with a simple blood test, that would be real progress,” Ellis said.
The cancer cells, once they leave the breast, often find their way into other tissues and organs. Ellis describes the cancer cells as weeds that are allowed to take root.
“If you have a dose of weed killer and you pour it on a tiny little thistle or weed, it would kill it stone dead, but the same amount of weed killer doesn’t kill a fully grown thistle. It might wilt a little and then return,” he said. “That’s very similar to cancer. Once the cancer cells begin to grow and get embedded, they can be hard to get rid of.”'
I'll just go get some 'human cancer Roundup' and blast away at those weeds before they can take root. You just tell me where they will be and if I am in the 80% or the 20%.
“The problem with mammography is that it is recommended in everybody every year after the age of 40, but only 1 in 8 women get breast cancer, so you are screening a lot of women who are destined never to get breast cancer,” he said. “High-risk patients might need yearly mammograms, but low-risk people might need it every 3-4 years.”
Hmmmm.... I was not at high risk twit face!
'When asked what can be done to reduce a person’s risk of developing cancer, Ellis said the biggest key is pursuing a healthy lifestyle, which means maintaining a good Body Mass Index (BMI).
Cancer made me fat. Starting with steroids in chemo causing bloat.
“A lot of women under-appreciate the role of alcohol in breast cancer risk. That is clearly dose-related,” he said. “Women who take more than a drink or two a week are gradually increasing their breast cancer risk. The more you drink, the higher the risk, so moderate your drinking as much as possible.”
Okay. Fine. Sobriety it is. Take all the fun out of life. As long as I can still have chocolate.
Medical screening is recommended to assess a person’s risk of developing cancer.
“If you have a family history, even if it doesn’t seem very impressive and the risk is small, get yourself over to chat with a genetic counselor. Genetic counseling and genetic risk assessment are still highly underutilized by the population,” he said.
Genetic testing is covered by most insurance, according to Ellis.
I didn't have a family history. None, nada, zip. Actually one of my aunts did some research and found that the only family history of breast cancer was one of my mother's second cousins back in the 1970s. I believe that the BRCA genes are responsible for only 5-10% of all breast cancers... So what about everyone else?
“There is no discrimination these days. That’s what prevented some women from testing because they were afraid they wouldn’t be able to get medical insurance based on their results. ObamaCare ended that,” he said.'
No discrimination? WTF? Get real buddy. Unfortunately there is a fair amount of discrimination these days against people with cancer and many other reasons. Insurance companies haven't necessarily jumped on the bandwagon of paying for genetic testing. And the question of gene ownership and patenting is still up for legal debate in some parts of the world.
Go read the rest of this article here. And the man cited here is the director of the Breast Center at the Baylor College of Medicine. He clearly has not walked the walk and has no bedside manner. He does end by saying more research is needed - especially for him...
This article made me so upset. I felt he was talking down to patients and making statements that just weren't true.
'“Today, we are curing about 80 percent of all breast cancer. That is an incredible advance to 20 years ago when we were curing, at best, about 50 percent,”“Today, we are curing about 80 percent of all breast cancer. That is an incredible advance to 20 years ago when we were curing, at best, about 50 percent,”...'
Why is the word cure being used in conjuction with breast cancer? There is no cure! (Insert expletive here). At first I questioned his percentages and it is true that just over 200,000 cases of breast cancer are diagnosed in the US each year and just about 40,000 women will die from it. 40,000 is 20% of 200,000. I don't think the other 160,000 consider themselves cured, more like they spend their lives in watchful waiting. And a woman diagnosed with breast cancer can die of any number of other causes besides breast cancer before their disease becomes terminal.
'“What we are left with is this 20 percent where clinic-based drugs are not adequate, but we mustn’t burden the 80 percent for whom today’s standard is adequate, giving those patients unnecessary and experimental treatments,” he said.'
Really? Can you tell me which of the women with diagnosed with breast cancer are in the 20% or the 80%? We have some ways of telling but many women get breast cancer who have no know risk factors. Like me.
Here's more:
'In years past, treatment of breast cancer was limited to surgery, chemotherapy and radiation. Today, drugs are being used to rid the body of cancer cells before surgery becomes an option.
“That method has several effects. One, you can get away with lesser forms of surgery - lumpectomy vs. mastectomy. More interestingly, you can track the effectiveness of the drug by observing what is going on in the breast. Maybe in the future we will be able to track effectiveness by looking at what is happening in the blood,” Ellis said.
Very few people today die from cancer in the breast, he noted.
“The problem becomes the cancerous cells that have left the breast. They are more difficult to track. If you could chase those cells with a simple blood test, that would be real progress,” Ellis said.
The cancer cells, once they leave the breast, often find their way into other tissues and organs. Ellis describes the cancer cells as weeds that are allowed to take root.
“If you have a dose of weed killer and you pour it on a tiny little thistle or weed, it would kill it stone dead, but the same amount of weed killer doesn’t kill a fully grown thistle. It might wilt a little and then return,” he said. “That’s very similar to cancer. Once the cancer cells begin to grow and get embedded, they can be hard to get rid of.”'
I'll just go get some 'human cancer Roundup' and blast away at those weeds before they can take root. You just tell me where they will be and if I am in the 80% or the 20%.
“The problem with mammography is that it is recommended in everybody every year after the age of 40, but only 1 in 8 women get breast cancer, so you are screening a lot of women who are destined never to get breast cancer,” he said. “High-risk patients might need yearly mammograms, but low-risk people might need it every 3-4 years.”
Hmmmm.... I was not at high risk twit face!
'When asked what can be done to reduce a person’s risk of developing cancer, Ellis said the biggest key is pursuing a healthy lifestyle, which means maintaining a good Body Mass Index (BMI).
Cancer made me fat. Starting with steroids in chemo causing bloat.
“A lot of women under-appreciate the role of alcohol in breast cancer risk. That is clearly dose-related,” he said. “Women who take more than a drink or two a week are gradually increasing their breast cancer risk. The more you drink, the higher the risk, so moderate your drinking as much as possible.”
Okay. Fine. Sobriety it is. Take all the fun out of life. As long as I can still have chocolate.
Medical screening is recommended to assess a person’s risk of developing cancer.
“If you have a family history, even if it doesn’t seem very impressive and the risk is small, get yourself over to chat with a genetic counselor. Genetic counseling and genetic risk assessment are still highly underutilized by the population,” he said.
Genetic testing is covered by most insurance, according to Ellis.
I didn't have a family history. None, nada, zip. Actually one of my aunts did some research and found that the only family history of breast cancer was one of my mother's second cousins back in the 1970s. I believe that the BRCA genes are responsible for only 5-10% of all breast cancers... So what about everyone else?
“There is no discrimination these days. That’s what prevented some women from testing because they were afraid they wouldn’t be able to get medical insurance based on their results. ObamaCare ended that,” he said.'
No discrimination? WTF? Get real buddy. Unfortunately there is a fair amount of discrimination these days against people with cancer and many other reasons. Insurance companies haven't necessarily jumped on the bandwagon of paying for genetic testing. And the question of gene ownership and patenting is still up for legal debate in some parts of the world.
Go read the rest of this article here. And the man cited here is the director of the Breast Center at the Baylor College of Medicine. He clearly has not walked the walk and has no bedside manner. He does end by saying more research is needed - especially for him...
This article made me so upset. I felt he was talking down to patients and making statements that just weren't true.
Tuesday, September 22, 2015
Let's go back to the 'why me' conversation for a minute
At some point along the denial slope of coping with your diagnosis, you sit there and ponder 'why me'? Why did I get this ailment?
We learn through this article that it can have something to do with where you live. Look at this lovely map showing rates of breast cancer diagnosis per 100,000 women:
And which are the top states with the highest rates of breast cancer?
As the article's author writes:
"There's not too much in common with these states other than the fact that they're in the upper half of the country (from a geographic standpoint), which leads me to one of my key points about breast cancer: Researchers aren't exactly sure why some women get breast cancer and others don't. Don't get me wrong; doctors do have a general idea about some of the primary risk factors for breast cancer, which include age, genetics, whether or not a patient is a smoker and/or is overweight, and even whether or not hormone replacement therapy was previously used. But, the fact remains that there's no certainty in determining whether or not one woman will get breast cancer and another one won't."
But maybe we can say the Bible Belt and the Mormons drink less than the rest of the country so maybe they have a reduced risk factor which helps keep their breast cancer rates down. But its all conjecture on my part because it hasn't been figured out.
So if we go back to the original 'why me' question, all we can say is there are still no answers. Crap. It is just a crapshoot.
We learn through this article that it can have something to do with where you live. Look at this lovely map showing rates of breast cancer diagnosis per 100,000 women:
And which are the top states with the highest rates of breast cancer?
- New Hampshire (141.7 incidences per 100,000 people)
- Massachusetts (135.5)
- Connecticut (135.2)
- Minnesota (135.1)
- Washington (133.9)
As the article's author writes:
"There's not too much in common with these states other than the fact that they're in the upper half of the country (from a geographic standpoint), which leads me to one of my key points about breast cancer: Researchers aren't exactly sure why some women get breast cancer and others don't. Don't get me wrong; doctors do have a general idea about some of the primary risk factors for breast cancer, which include age, genetics, whether or not a patient is a smoker and/or is overweight, and even whether or not hormone replacement therapy was previously used. But, the fact remains that there's no certainty in determining whether or not one woman will get breast cancer and another one won't."
But maybe we can say the Bible Belt and the Mormons drink less than the rest of the country so maybe they have a reduced risk factor which helps keep their breast cancer rates down. But its all conjecture on my part because it hasn't been figured out.
So if we go back to the original 'why me' question, all we can say is there are still no answers. Crap. It is just a crapshoot.
Wednesday, September 16, 2015
Why don't we all have cancer?
As a cancer person, do you ever have those 'why me?' conversations with yourself? Well apparently everyone should really be having the conversations with themselves of 'why not me?'
I found this video on twitter, thanks to Matthew Zachary of Stupid Cancer. Its nine minutes of worthwhile watching. The host is a fairly interesting presenter.
So what did you think? Why don't we all have cancer?
I found this video on twitter, thanks to Matthew Zachary of Stupid Cancer. Its nine minutes of worthwhile watching. The host is a fairly interesting presenter.
So what did you think? Why don't we all have cancer?
Thursday, July 16, 2015
The mammogram benefit discussion
There have been a few (thousand) discussions on the benefits of regular mammograms in the past few years. There are all sorts of claims on the problems of false positives, over diagnosis, false negatives, and all that.
So stop the presses and read the results of this latest survey. Its a bit of a statistics lesson so allow me to break it down with my stellar liberal arts education and marketing background
This survey looked at the incidence of breast cancer and the increased diagnosis trend from 1941 on. The first half of the time studied was from 1941 to the 1970s before mammograms - the base data.* Then it looked at the rates of diagnosis from the 1970s to the present.
What they could tell from the base data is the trend in increase in breast cancer from increased environmental or whatever factors and got their base rate of increase of 1.3% annually - or the expected rate of increase in breast cancer diagnosis. They also got their percentages of expected diagnoses of early and late stage diagnosis.
Then they looked at the date from the 1970s to present. What they then determined is that since the introduction of mammograms, the proportion of diagnoses of early stage cancer are up significantly and there is a 30% decrease in the expected rates of late stage diagnosis.
That is the benefit of mammography. The 30% decrease in late stage diagnosis. If you wish to debate the benefits or lack of benefits of mammography, please figure out a way to dispute that point.
*My 1981 cancer resource book from my first thyroid cancer diagnosis does talk about how mammography was being considered for annual screening for all women.
So stop the presses and read the results of this latest survey. Its a bit of a statistics lesson so allow me to break it down with my stellar liberal arts education and marketing background
This survey looked at the incidence of breast cancer and the increased diagnosis trend from 1941 on. The first half of the time studied was from 1941 to the 1970s before mammograms - the base data.* Then it looked at the rates of diagnosis from the 1970s to the present.
What they could tell from the base data is the trend in increase in breast cancer from increased environmental or whatever factors and got their base rate of increase of 1.3% annually - or the expected rate of increase in breast cancer diagnosis. They also got their percentages of expected diagnoses of early and late stage diagnosis.
Then they looked at the date from the 1970s to present. What they then determined is that since the introduction of mammograms, the proportion of diagnoses of early stage cancer are up significantly and there is a 30% decrease in the expected rates of late stage diagnosis.
That is the benefit of mammography. The 30% decrease in late stage diagnosis. If you wish to debate the benefits or lack of benefits of mammography, please figure out a way to dispute that point.
*My 1981 cancer resource book from my first thyroid cancer diagnosis does talk about how mammography was being considered for annual screening for all women.
Sunday, May 24, 2015
Retaining the sense of control
That sense of having some control over your situation goes a long way often - particularly in the decision making part of a cancer diagnosis. It sounds like common sense but for some reason we needed a study to prove it to the scientists (and because we need more studies to keep the scientists busy).
This was published in the recent issue of Cure Magazine (which if you have cancer and do not read it, you really should - online or paper copies on the mail are free). As part of the many stressors that accompany cancer, being part of the decision making process where you can learn the different options and their potential impacts and side effects. It gives the patient back some control over their situation.
Why didn't this happen sooner???
This was published in the recent issue of Cure Magazine (which if you have cancer and do not read it, you really should - online or paper copies on the mail are free). As part of the many stressors that accompany cancer, being part of the decision making process where you can learn the different options and their potential impacts and side effects. It gives the patient back some control over their situation.
Why didn't this happen sooner???
Saturday, April 4, 2015
New Guidelines for Life after Cancer
The Spring issue of Cure Magazine has an article on the new guidelines for life after cancer from the National Comprehensive Cancer Network. Sometimes I just want to say 'its about time'.
The article provides a nice overview and is a worthy read. But I do feel it is way late. Why does the medical profession feel so vertical? In the days of personalized medicine, isn't the patient's entire body supposed to be of concern? Each specialist only seems to deal with their little focus and not that of the entire patient.
A cancer diagnosis is not the same as a chicken pox diagnosis and leaves a life long impact. The new guidelines show a new way of thinking. If no one asks about it, how will it become known as an issue?
'To develop the new guidelines, the NCCN engaged experts in oncology from throughout the country. During the course of a year, they split into working groups—one for pain, for example, another for sleep issues—and reviewed the scientific literature on how to assess survivors’ problems and intervene in a meaningful way. Focus areas included:
To check for anxiety and depression, for example, the provider might ask:
There is a lot of reliance on the primary care physician who is supposed to care about the whole patient. At this point, I see my primary care annually and see all the specialists more frequently. While they focus on their part, its only when I get to my PCP, that my whole body and being gets discussed. And last year due to scheduling issues, I saw her nurse practitioner, who is nice, but not the same. I do like having my annual physical with my PCP.
But back to the new guidelines. I think its time for me to start making a list of my issues that relate to the focus areas to make sure I am prepared for my appointment... In July.
The article provides a nice overview and is a worthy read. But I do feel it is way late. Why does the medical profession feel so vertical? In the days of personalized medicine, isn't the patient's entire body supposed to be of concern? Each specialist only seems to deal with their little focus and not that of the entire patient.
A cancer diagnosis is not the same as a chicken pox diagnosis and leaves a life long impact. The new guidelines show a new way of thinking. If no one asks about it, how will it become known as an issue?
'To develop the new guidelines, the NCCN engaged experts in oncology from throughout the country. During the course of a year, they split into working groups—one for pain, for example, another for sleep issues—and reviewed the scientific literature on how to assess survivors’ problems and intervene in a meaningful way. Focus areas included:
- Anxiety and depression
- Cognitive dysfunction
- Exercise
- Fatigue
- Immunizations and prevention of infections
- Pain
- Sexual dysfunction
- Sleep disorders
To check for anxiety and depression, for example, the provider might ask:
- Do you often feel nervous or do you worry?
- Do you often feel sad or depressed?
- Have you lost interest in things you used to enjoy?'
There is a lot of reliance on the primary care physician who is supposed to care about the whole patient. At this point, I see my primary care annually and see all the specialists more frequently. While they focus on their part, its only when I get to my PCP, that my whole body and being gets discussed. And last year due to scheduling issues, I saw her nurse practitioner, who is nice, but not the same. I do like having my annual physical with my PCP.
But back to the new guidelines. I think its time for me to start making a list of my issues that relate to the focus areas to make sure I am prepared for my appointment... In July.
Friday, March 13, 2015
The cancer patient's interpretation of the doctor's advice
I came upon this article by a surgeon who has partnered with some cancer patients to come up with this advice when you are blindsided by cancer. While I agree with it overall, of course I have a few comments.
His advice is summarized as:
Own your cancer and your life. Don't just give up. Keep ownership of your life and take ownership of your cancer. Be a participant in the decision making process. Get a cancer buddy/caregiver to help you through this and hold your hand, bring your bowls of ice cream, and glasses of wine.
I think you should go to the internet for information with the caveat that you find out the good places to go for information on your cancer. Do not wildly Google your cancer and the words 'death rates' - you will only stress yourself out. But if you have information to direct you to where the information is about your cancer where you can learn the right kind of information which is not a pack of lies, aka a pile of hooey. My tip, if you do not know where to start, always start with the American Cancer Society.
I never really have selected my 'physician partners'. What I have done, is ditched any which I did not like. But I have never physician shopped or second opinion hopped.
Two critical features about your cancer are:
"First, you must learn how your specific type of cancer behaves, as each (breast, prostate, whatever) is unique. Second, you must understand your specific cancer stage."
This will help you greatly to understand where you are and what are your options. You are putting a name on it. Which leads me to my personal requirement:
You cannot have an ailment or take a medication without knowing how to both spell and say it properly. This is another way you take ownership of your cancer and learn more about it.
Okay, so the patient came through with agreements and disagreements but I think we both can agree that cancer should not take you over. You are still you.
His advice is summarized as:
- Take a breath, seriously
- Own your cancer
- Don't run to the internet
- Select your physician partners
- Understand two critical features of your cancer
Own your cancer and your life. Don't just give up. Keep ownership of your life and take ownership of your cancer. Be a participant in the decision making process. Get a cancer buddy/caregiver to help you through this and hold your hand, bring your bowls of ice cream, and glasses of wine.
I think you should go to the internet for information with the caveat that you find out the good places to go for information on your cancer. Do not wildly Google your cancer and the words 'death rates' - you will only stress yourself out. But if you have information to direct you to where the information is about your cancer where you can learn the right kind of information which is not a pack of lies, aka a pile of hooey. My tip, if you do not know where to start, always start with the American Cancer Society.
I never really have selected my 'physician partners'. What I have done, is ditched any which I did not like. But I have never physician shopped or second opinion hopped.
Two critical features about your cancer are:
"First, you must learn how your specific type of cancer behaves, as each (breast, prostate, whatever) is unique. Second, you must understand your specific cancer stage."
This will help you greatly to understand where you are and what are your options. You are putting a name on it. Which leads me to my personal requirement:
You cannot have an ailment or take a medication without knowing how to both spell and say it properly. This is another way you take ownership of your cancer and learn more about it.
Okay, so the patient came through with agreements and disagreements but I think we both can agree that cancer should not take you over. You are still you.
Saturday, January 31, 2015
Why should care needed at a second cancer diagnosis need to be debated?
Last week or so the British Parliament debated whether additional care is needed for patients undergoing a second breast cancer diagnosis. Why should this be any different than any other cancer diagnosis?
As far as I am concerned, if a patient is diagnosed with a second cancer, it doesn't matter if its the same cancer or a new cancer, the patient needs to have access to all available resources. Why should this even be a discussion? Well it seems that in the UK National Health Service, the patient with the secondary cancer doesn't usually get access to the clinical nurse specialist that was available at their first diagnosis.
When you are faced with a big diagnosis such as cancer, it is important to have as many resources as possible. And it should be up to the patient to decide which resources they want to utilize - and that may be later as opposed to sooner. however the resources should be there. Please do not make the decision for the patient and let them make it for themselves.
As far as I am concerned, if a patient is diagnosed with a second cancer, it doesn't matter if its the same cancer or a new cancer, the patient needs to have access to all available resources. Why should this even be a discussion? Well it seems that in the UK National Health Service, the patient with the secondary cancer doesn't usually get access to the clinical nurse specialist that was available at their first diagnosis.
When you are faced with a big diagnosis such as cancer, it is important to have as many resources as possible. And it should be up to the patient to decide which resources they want to utilize - and that may be later as opposed to sooner. however the resources should be there. Please do not make the decision for the patient and let them make it for themselves.
Friday, January 30, 2015
Its a life, not a fight
Cancer is not a battle, or a war, or anything more than someone's life. Finally there is some research backing me up. New research says that calling cancer a fight can be negative for the patient. Yes, negative.
War connotations lead to feelings of failure. The blame gets put on the patient. Who gets the guilt and sense of failure if they face further progressions in their cancer - which is completely beyond their control. Guilt and failure do not lead to happy people who are willing to take care of themselves and adopt healthy lifestyles. They lead to depression and more.
President Nixon declared a war on cancer. The American Cancer Society calls us survivors from the point of diagnosis. But they are wrong. It is not a battle or a war. It is a life.
So take that battle, war or whatever it is out of the equation. Stop telling us we are survivors.
All I survived is a boatload of doctor appointments. Nothing more, nothing less. I try to stay positive but do not try to shift any blame onto me.
War connotations lead to feelings of failure. The blame gets put on the patient. Who gets the guilt and sense of failure if they face further progressions in their cancer - which is completely beyond their control. Guilt and failure do not lead to happy people who are willing to take care of themselves and adopt healthy lifestyles. They lead to depression and more.
President Nixon declared a war on cancer. The American Cancer Society calls us survivors from the point of diagnosis. But they are wrong. It is not a battle or a war. It is a life.
So take that battle, war or whatever it is out of the equation. Stop telling us we are survivors.
All I survived is a boatload of doctor appointments. Nothing more, nothing less. I try to stay positive but do not try to shift any blame onto me.
Thursday, January 22, 2015
Let's go back to the 'why me' conversation for a minute
At some point along the denial slope of coping with your diagnosis, you sit there and ponder 'why me'? Why did I get this ailment?
We learn through this article that it can have something to do with where you live. Look at this lovely map showing rates of breast cancer diagnosis per 100,000 women:
And which are the top states with the highest rates of breast cancer?
As the article's author writes:
"There's not too much in common with these states other than the fact that they're in the upper half of the country (from a geographic standpoint), which leads me to one of my key points about breast cancer: Researchers aren't exactly sure why some women get breast cancer and others don't. Don't get me wrong; doctors do have a general idea about some of the primary risk factors for breast cancer, which include age, genetics, whether or not a patient is a smoker and/or is overweight, and even whether or not hormone replacement therapy was previously used. But, the fact remains that there's no certainty in determining whether or not one woman will get breast cancer and another one won't."
But maybe we can say the Bible Belt and the Mormons drink less than the rest of the country so maybe they have a reduced risk factor which helps keep their breast cancer rates down. But its all conjecture on my part because it hasn't been figured out.
So if we go back to the original 'why me' question, all we can say is there are still no answers. Crap. It is just a crapshoot.
We learn through this article that it can have something to do with where you live. Look at this lovely map showing rates of breast cancer diagnosis per 100,000 women:
And which are the top states with the highest rates of breast cancer?
- New Hampshire (141.7 incidences per 100,000 people)
- Massachusetts (135.5)
- Connecticut (135.2)
- Minnesota (135.1)
- Washington (133.9)
As the article's author writes:
"There's not too much in common with these states other than the fact that they're in the upper half of the country (from a geographic standpoint), which leads me to one of my key points about breast cancer: Researchers aren't exactly sure why some women get breast cancer and others don't. Don't get me wrong; doctors do have a general idea about some of the primary risk factors for breast cancer, which include age, genetics, whether or not a patient is a smoker and/or is overweight, and even whether or not hormone replacement therapy was previously used. But, the fact remains that there's no certainty in determining whether or not one woman will get breast cancer and another one won't."
But maybe we can say the Bible Belt and the Mormons drink less than the rest of the country so maybe they have a reduced risk factor which helps keep their breast cancer rates down. But its all conjecture on my part because it hasn't been figured out.
So if we go back to the original 'why me' question, all we can say is there are still no answers. Crap. It is just a crapshoot.
Tuesday, January 20, 2015
The guilt factor
This is a less discussed issue relating to cancer diagnosis and treatment - the guilt factor. Sometimes its not even mentioned, while other times it is just brushed off as something you need to learn to live with.
Guilt is what got you to do what you were supposed to when you were a child. Guilt is what your morals use to keep you in line.
But then we feel cancer guilt which is different. Why didn't I get it and they did? Why did they have a recurrence and I didn't?
The more cancer friends I have gained, I have also lost some. I have the little list of in memorium blogs I used to follow, the group of friends on Facebook that are no longer here and are in memorium, there are the phone numbers in my phone that I know don't work any more. And when they do again, it will be a stranger's voice on the other end.
It seems now every month or two, or even more frequently, someone I know either has just learned about their stage IV diagnosis or I learn about their funeral arrangements.
Each time, there is a double dose of emotions the little tiny - "I'm glad it wasn't me" which is immediately followed by the huge "how could I even think that?" and then followed by cancer survivor guilt.
Sometimes the guilt lurks in the back ground and sometimes it emerges up front. It gives us down days but then we stuff it away and we learn to cope again. But its always there.
Guilt is what got you to do what you were supposed to when you were a child. Guilt is what your morals use to keep you in line.
But then we feel cancer guilt which is different. Why didn't I get it and they did? Why did they have a recurrence and I didn't?
The more cancer friends I have gained, I have also lost some. I have the little list of in memorium blogs I used to follow, the group of friends on Facebook that are no longer here and are in memorium, there are the phone numbers in my phone that I know don't work any more. And when they do again, it will be a stranger's voice on the other end.
It seems now every month or two, or even more frequently, someone I know either has just learned about their stage IV diagnosis or I learn about their funeral arrangements.
Each time, there is a double dose of emotions the little tiny - "I'm glad it wasn't me" which is immediately followed by the huge "how could I even think that?" and then followed by cancer survivor guilt.
Sometimes the guilt lurks in the back ground and sometimes it emerges up front. It gives us down days but then we stuff it away and we learn to cope again. But its always there.
Those pesky guidelines again
You get diagnosed with an ailment, you follow (blindly or not) your doctor's recommendations. You make your decisions and you undergo treatment. Your doctor is following the guidelines and you do your research and make your decision based on their recommendations and the current guidelines.
But what if, the guidelines have changed recently and you need to rethink your decision. What would you do with the old guidelines or what would you do with the new guidelines?
I found this story interesting of a local journalist confronted with a DCIS diagnosis and changed guidelines. DCIS is often over treated - or so the current guidelines believe. But which cases will go on to become something bad or not. What treatment options should be followed? Its a case of mastectomy vs. lumpectomy vs. no surgery.
As patients spend more time educating themselves on treatment options and guidelines, their decisions are more complicated. They want to be the educated consumer. But it can be very confusing to try to learn about statistics in medical care in treatment options.
Damn those pesky guidelines.
But what if, the guidelines have changed recently and you need to rethink your decision. What would you do with the old guidelines or what would you do with the new guidelines?
I found this story interesting of a local journalist confronted with a DCIS diagnosis and changed guidelines. DCIS is often over treated - or so the current guidelines believe. But which cases will go on to become something bad or not. What treatment options should be followed? Its a case of mastectomy vs. lumpectomy vs. no surgery.
As patients spend more time educating themselves on treatment options and guidelines, their decisions are more complicated. They want to be the educated consumer. But it can be very confusing to try to learn about statistics in medical care in treatment options.
Damn those pesky guidelines.
Weight gain is a side effect of cancer.
Weight gain is the side effect of everything these days - even breathing. I am on too many medications which have a side effect of weight gain.... So here I sit in my slightly tight clothes two sizes larger than I used to wear in dire need of a drastic deflabbification project.
"People with certain cancers – such as breast, prostate and colon cancer – are more likely to gain weight during treatment due to the therapies used to combat their disease. Hormone therapy, some chemotherapy regimens and medications such as steroids all can cause weight gain, as well as water retention."
THEY DIDN'T TELL ME THIS WHEN I WAS DIAGNOSED! Well there was a lot they didn't tell me - or that I didn't want to hear. But it is much harder to lose weight after breast cancer while still on hormone therapy.
And I am also on all sorts of other medications for my other ailments that might cause weight gain. I do go to the gym three times a week so its not as if I just sit around all the time.
And of course we need to remember:
"Some studies of cancer patients have linked obesity to an increased risk of recurrence and death in several common cancers, including breast, colorectal and prostate cancer. The California Teachers Study, led by City of Hope’s Leslie Berstein, showed that being obese was associated with a significant increase of dying from breast cancer for many women." More on this here.
So your treatment makes you fat and your fatness makes you more likely to die from it. So obviously something is wrong with the treatment. Does anyone see any irony with this?
The real question is if I went off the medications that might cause weight gain, would the weight magically disappear? I think that answer is a big fat no. Damn.
"People with certain cancers – such as breast, prostate and colon cancer – are more likely to gain weight during treatment due to the therapies used to combat their disease. Hormone therapy, some chemotherapy regimens and medications such as steroids all can cause weight gain, as well as water retention."
THEY DIDN'T TELL ME THIS WHEN I WAS DIAGNOSED! Well there was a lot they didn't tell me - or that I didn't want to hear. But it is much harder to lose weight after breast cancer while still on hormone therapy.
And I am also on all sorts of other medications for my other ailments that might cause weight gain. I do go to the gym three times a week so its not as if I just sit around all the time.
And of course we need to remember:
"Some studies of cancer patients have linked obesity to an increased risk of recurrence and death in several common cancers, including breast, colorectal and prostate cancer. The California Teachers Study, led by City of Hope’s Leslie Berstein, showed that being obese was associated with a significant increase of dying from breast cancer for many women." More on this here.
So your treatment makes you fat and your fatness makes you more likely to die from it. So obviously something is wrong with the treatment. Does anyone see any irony with this?
The real question is if I went off the medications that might cause weight gain, would the weight magically disappear? I think that answer is a big fat no. Damn.
Blood tests for breast cancer?
You mean maybe we could skip the annual mammogram and just have another blood test? That would be too cool. Now I couldn't read the article without subscribing to another magazine but suffice to say the abstract is promising enough:
"A new blood test may be able to detect the early stages of breast cancer, researchers say. Scheduled to begin vigorous clinical testing in early 2014, the test successfully identified the presence of breast cancer cells from serum biomarkers in preliminary testing, a huge step forward that could make breast cancer testing more widespread and more regularly detected early..."
Wouldn't it be nice if a test could be replaced by a blood test? How much money would be saved? How much time could be saved? Mammograms and MRIs only after an older age - 55? - or for high risk groups? This is something I would call progress - of the good kind.
"A new blood test may be able to detect the early stages of breast cancer, researchers say. Scheduled to begin vigorous clinical testing in early 2014, the test successfully identified the presence of breast cancer cells from serum biomarkers in preliminary testing, a huge step forward that could make breast cancer testing more widespread and more regularly detected early..."
Wouldn't it be nice if a test could be replaced by a blood test? How much money would be saved? How much time could be saved? Mammograms and MRIs only after an older age - 55? - or for high risk groups? This is something I would call progress - of the good kind.
Retaining the sense of control
That sense of having some control over your situation goes a long way often - particularly in the decision making part of a cancer diagnosis. It sounds like common sense but for some reason we needed a study to prove it to the scientists (and because we need more studies to keep the scientists busy).
This was published in the recent issue of Cure Magazine (which if you have cancer and do not read it, you really should - online or paper copies on the mail are free). As part of the many stressors that accompany cancer, being part of the decision making process where you can learn the different options and their potential impacts and side effects. It gives the patient back some control over their situation.
Why didn't this happen sooner???
This was published in the recent issue of Cure Magazine (which if you have cancer and do not read it, you really should - online or paper copies on the mail are free). As part of the many stressors that accompany cancer, being part of the decision making process where you can learn the different options and their potential impacts and side effects. It gives the patient back some control over their situation.
Why didn't this happen sooner???
Cancer staging - take two
When I was diagnosed with breast cancer in 2007, I was overly concerned about staging. We all were. 'What stage were you? How long has it been?" we carefully asked each other and compared notes. We introduced ourselves to each other and whispered "what stage are you?" and "how do you feel?".
[There is more on my staging here. If you want a basic overview of how they get to staging read this or go to cancer.org and look up your type of cancer.]
Now I will talk about reading between the lines in my non medical point of view. I never went to medical school but like any cancer patient I feel like I am medically educated now.
Things I have learned:
Every so often we talk about our next scans or doctor appointments but they do not dominate our lives. We do might flinch when we hear about stage IV cancer diagnosis because we know more about what it really means. We need the whole story behind it before we can discuss it calmly. We know better than to jump to conclusions.
All I can say is cancer takes on new meanings six years out.
[There is more on my staging here. If you want a basic overview of how they get to staging read this or go to cancer.org and look up your type of cancer.]
Now I will talk about reading between the lines in my non medical point of view. I never went to medical school but like any cancer patient I feel like I am medically educated now.
Things I have learned:
- Your initial staging can be wrong. When you have surgery, they try to give you a quick staging that is later validated by the pathology lab to confirm it. My surgeon refused to do this because he said they have a 50% error rate, so I had to wait an agonizing four days to find out what I really was. Since then I have heard numerous stories from patients being told that 'first my doctor said this but then the lab report came back and he changed to that'. I think I am glad I waited up front to get the real story.
- Your initial staging can be wrong months later. I know of two stories months out the doctors changed their staging. One was a local newscaster who was diagnosed with breast cancer at stage III but later was told she was only stage II. Would this have changed, and eased, her treatment? I don't know but it still would be upsetting.
- No matter what stage you are, there is still life after cancer. Just recently I met a woman whose children running a fundraiser for a neighbor with pancreatic cancer. She was so upset. She had no idea how I knew anything but I talked to her for a few minutes and she seemed to calmed down. Stage IV is not a death sentence. I have a friend who is over 30 years out from a Stage IV ovarian cancer diagnosis. Another friend recently died after 17 years at Stage IV breast cancer. A third friend is 6 years out from a stage IV diagnosis and is not even receiving treatment because she has no symptoms. If have more stories if you want to ask...
- Some cancers come with a stage IV diagnosis automatically, lymphoma for example, because they are everywhere. But that doesn't mean they are a death sentence any time soon.
- All cancers are not a death sentence. I can tell you stories and introduce you to people who are decades out from diagnosis and doing just fine thank you.
Every so often we talk about our next scans or doctor appointments but they do not dominate our lives. We do might flinch when we hear about stage IV cancer diagnosis because we know more about what it really means. We need the whole story behind it before we can discuss it calmly. We know better than to jump to conclusions.
All I can say is cancer takes on new meanings six years out.
I am skilled
In the past few days I have had the opportunity to share knowledge and decipher the oncology department. It turns out hanging out in the Cancer wing gives you ins on all sorts of special information:
- I know the receptionist - not just because she has been there since I started going there in 2007 but she also used to work out at the gym I go to where her cousin was a trainer.
- I could explain about the special amenities in the oncology waiting room - the lunch and snack trays that come through earlier in the day.
- I know they do validate parking - its the least they can do for their oncology patients.
- They have the nicest nurses and staff who regularly go the extra mile (I'm not saying that other nurses and staff don't do this but there seems to be extra concern and caring in oncology - this may be due to the frequency of patient visits).
- I know the best place to park which involves the least walking to get to the far away oncology wing.
- I know all the credible online resources and which ones to avoid.
- I could spell most of the big words the hematologist shared with us.
- I knew what questions to ask to get to the next steps.
Monday, January 19, 2015
Things cancer has taught me
I found an article written about what she learned from her mother's cancer. I can tell you its also things I have learned:
- Doctors do not have all the answers but that can be okay. I think we are taught that doctors know everything and will have the answer for every ache and pain. But with cancer we quickly learn they do not. But that can be okay. We can educate ourselves and remain satisfied with our care. Also we cannot expect the doctors to make the big decisions for us. They suggest courses of treatment but we can make our own decisions as to which ones to choose.
I have learned not to follow blindly the medical guidance but to question and discuss decisions in ways I had never thought I would. - Sometimes patients don't want to talk about their cancer or other ailment. We are people. We do not live on the live reality station called "Cancer 24/7". We go to the grocery store, we shop on line, we go out to dinner, we have friends, we do laundry. Its sort of like the pages in People magazine where real stars are caught doing normal things - like playing in the park with their children or pumping gas.
Cancer people are people too. So stop asking us how we "really" feel (with that knowing wink) every time you see us. Its annoying after a while. - There are many people can't deal with a cancer diagnosis. Those friends that brought you home made chicken noodle soup when you had the flu? Forget them, you may never see them again. The friends who stick by you are your real friends. You need to learn to make new friends who aren't scared of your diagnosis.
- People are changed by their cancer diagnosis. There is some mystery about this new normal they are supposed to achieve (that doesn't really exist) but a cancer diagnosis is basically a life changing event. Cancer people have no control over this but they really do learn about what is more important in life and how physical limitations can change them.
- Caregivers are also affected by the cancer diagnosis. They do not realize about the bonds they have to the patient and how the other person changes will affect them as well.
Sunday, January 18, 2015
What cancer is and isn't
I see lots of different takes on what cancer is and is not. Here is my take:
Cancer is:
Cancer is:
- a disease that can kill you.
- a diagnosis with a unimaginable impact. It impact has been compared to PTSD. If you haven't walked the walk, don't even try.
- a life long ailment. Just because you are done treatment, doesn't mean you are home free.
- a gift. I have been known to cynically call it a 'gift that keeps on giving' because the cancer roller coaster really sucks. You never know when it will cause another problem or recurrence.
- a color. As soon as pinkification begins, its like putting lipstick on a pig. Other colors included. Don't try to 'paint' cancer.
- a political position. Some politicians have been known to make it their platform.
- a spiritual condition, Some people get more religious which is fine. But some people after diagnosis, make it their calling.
- your life.
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