This morning's news includes a story on a gentleman with stage IV esophageal cancer who is disputing with his insurance company to cover the costs of his treatment. He is treated at Dana Farber and is pursuing alternative treatments. I am fully supportive of efforts to prevent insurance companies from making medical decisions.
Also, I am a big fan of preventing bloated insurance costs where people expect everything to be covered and then can't understand why their premiums keep going up in leaps and bounds. There has to be a happy medium while is why insurance companies need to be allowed to draw the line somewhere.
As you are aware, I do not believe insurance companies are capable of making individual medical decisions. They may employ their own oncologists and other doctors to review decisions. But unless the doctors have met with the patient and examined them, they have no idea what they are doing. At the very least the patient's doctors recommendations should be the guidelines followed. Not someone who is reading an actuarial guide and cost/benefit analysis. That is no way to make a decision that might permanently affect some one else's life.
However, and this is a big fat HOWEVER, if the treatment has not been shown to have any proven results I do not believe the insurance providers should be required to cover it.
There are all sorts of quackery theories on curing cancer and myths about treating and curing cancer. There are also many alternative treatments that are not necessarily covered by insurance but have proven to be beneficial to cancer and other patients. This would include things like acupuncture.
The problem with this gentleman's request is that he is asking for coverage for something called Insulin Potential Therapy or IPT. I googled it and the first two results were from Quackwatch.org and from the American Cancer Society showing that their was no real proof it works.
While I understand he is fighting for his life, I am actually on the side of the insurance company here. The treatment he wants has not been shown to be effective. He has a full medical team available to him where he is being treated. While he may be feeling better currently, there is no way to tell if it can be attributed to the IPT or some other reason.
Showing posts with label cancer treatment. Show all posts
Showing posts with label cancer treatment. Show all posts
Long term risks of cancer treatment
A recent study revealed that most of the survivors of childhood cancers, end up with life long health problems. I find this a bit scary. It shows that cancer treatment can cause long term health issues. Yes what was standard treatment up to 48 years ago, the length of time from the longest survivor's treatment, certainly is not standard today.
Cancer treatment has been likened to a slash and burn. Cut out what can be found and then burn it with radiation and then go after it systemically with chemotherapy. It must leave long term issues as it is such a harsh system of treatment.
But how are we going to be in 40 years? Will our cancer treatments impact our potential longevity? But what about those of us who have had cancer treatments? Because we survived treatment are we then putting our future health at risk? What didn't kill us, may not have made us stronger but the treatment may kill us in the end.
Perhaps more research is needed.
Cancer treatment has been likened to a slash and burn. Cut out what can be found and then burn it with radiation and then go after it systemically with chemotherapy. It must leave long term issues as it is such a harsh system of treatment.
But how are we going to be in 40 years? Will our cancer treatments impact our potential longevity? But what about those of us who have had cancer treatments? Because we survived treatment are we then putting our future health at risk? What didn't kill us, may not have made us stronger but the treatment may kill us in the end.
Perhaps more research is needed.
Optimism in the face of cancer
When one is diagnosed with cancer, all sorts of things flash in our brains - rail thin bald people, iv poles, scars, doctors, hospitals, hospices. All sorts of things loom in our future - medical tests, things that pinch, chemotherapy, and ugly hospital gowns with a draft in the back.
One of the key players in any cancer journey is the oncologist. Oncologists provide hope, direction, leadership and optimism. They offer treatment protocols to heal us, they provide solutions to treatment side effects, they provide answers to our questions.
They do offer optimism as I said. I read this article on an oncologist and his views of optimism a few days ago and have been thinking about it, mulling it through my brain.
What is optimism for an oncologist faced with a patient with advanced cancer? A few weeks/months of symptom free existence? They know what they are providing - a chance at a little longer.
As a patient our desire for optimism is a little different. I know someone who is a stage IV ovarian cancer person of over 30 years and still going strong. I had another friend who was a stage IV breast cancer person for more than 17 years. Those are the optimistic numbers a patient might take comfort in. But is that what an oncologist offers us? Not really. They measure time in weeks and months, taken in stages until the next round of tests to check for progression.
Is stage IV cancer existence a happy one? Not really. From what I have seen is it is a long adventure in the chemo for life program with changing treatment protocols, CT scans with no concern for lifetime exposure rates, and regular blood work done on burnt out blood vessels.
A patient upon first cancer diagnosis gradually learns to be as optimistic as they can based on their own medical journey. Some are much easier than others. But an optimistic oncologist always provides the guidance. We might just wish they too were looking at years instead of weeks and months.
One of the key players in any cancer journey is the oncologist. Oncologists provide hope, direction, leadership and optimism. They offer treatment protocols to heal us, they provide solutions to treatment side effects, they provide answers to our questions.
They do offer optimism as I said. I read this article on an oncologist and his views of optimism a few days ago and have been thinking about it, mulling it through my brain.
What is optimism for an oncologist faced with a patient with advanced cancer? A few weeks/months of symptom free existence? They know what they are providing - a chance at a little longer.
As a patient our desire for optimism is a little different. I know someone who is a stage IV ovarian cancer person of over 30 years and still going strong. I had another friend who was a stage IV breast cancer person for more than 17 years. Those are the optimistic numbers a patient might take comfort in. But is that what an oncologist offers us? Not really. They measure time in weeks and months, taken in stages until the next round of tests to check for progression.
Is stage IV cancer existence a happy one? Not really. From what I have seen is it is a long adventure in the chemo for life program with changing treatment protocols, CT scans with no concern for lifetime exposure rates, and regular blood work done on burnt out blood vessels.
A patient upon first cancer diagnosis gradually learns to be as optimistic as they can based on their own medical journey. Some are much easier than others. But an optimistic oncologist always provides the guidance. We might just wish they too were looking at years instead of weeks and months.
Spiraling cancer costs
I find the costs of all medical care, particularly end of life care and cancer care, to be increasing exponentially. Researchers come up with new medications based on smaller and smaller groups of patients. Drug manufacturers charge more and more in an effort to 'recoup' their research costs.
Doctors understand this financial burden and are more and more beginning to take action and have discussions on this. I found this article very interesting and worth the read or the view (both in video and text).
One point that they made is that new drugs may help 20% of a population but if all are treated with the drug in an effort to reach the 20%, wouldn't it make more sense to figure out how to treat just the 20% instead of wasting the treatment essentially on patients who would not benefit and would suffer the side effects?
Another point is follow up PET scans for cancer patients. If these expensive tests are reduced, we can save millions. Or follow up for other post cancer patients, find ways to get the same quality of life at a lower overall cost.
In another article, ASCO members highlight the Top Five List Identifies Opportunities to Improve Quality and Value in Cancer Care. They make recommendations on reducing some testing and some treatments. I think we have a tendency with cancer to throw everything we can at it but are learning that more isn't always better.
So it looks like doctors are taking action on how to help reduce the costs. Now we need to get other parts of the medical care system to do the same.
Doctors understand this financial burden and are more and more beginning to take action and have discussions on this. I found this article very interesting and worth the read or the view (both in video and text).
One point that they made is that new drugs may help 20% of a population but if all are treated with the drug in an effort to reach the 20%, wouldn't it make more sense to figure out how to treat just the 20% instead of wasting the treatment essentially on patients who would not benefit and would suffer the side effects?
Another point is follow up PET scans for cancer patients. If these expensive tests are reduced, we can save millions. Or follow up for other post cancer patients, find ways to get the same quality of life at a lower overall cost.
In another article, ASCO members highlight the Top Five List Identifies Opportunities to Improve Quality and Value in Cancer Care. They make recommendations on reducing some testing and some treatments. I think we have a tendency with cancer to throw everything we can at it but are learning that more isn't always better.
So it looks like doctors are taking action on how to help reduce the costs. Now we need to get other parts of the medical care system to do the same.
What if Chemo came the last resort instead of the first wave of treatment?
That would be awesome. Right now most cancers are automatically treated with chemo, radiation and surgery. But with the development of individualized treatment and molecular medications, chemotherapy may be going the way of the past.
This is a huge advance in cancer treatment and looks like it is not so far fetched. When I first saw this article I was very surprised but glad to see it.
It had never occurred to me that cancer could be treated with out chemotherapy. In my mind I was leaning towards chemo regimens that were not as harsh on the patient than in the past.
So optimism reigns in cancer land these days.
By the way yesterday's procedure went pretty well, some pain as a result but that should go away in a day or two. I'm taking it easy today and back to work tomorrow.
This is a huge advance in cancer treatment and looks like it is not so far fetched. When I first saw this article I was very surprised but glad to see it.
It had never occurred to me that cancer could be treated with out chemotherapy. In my mind I was leaning towards chemo regimens that were not as harsh on the patient than in the past.
So optimism reigns in cancer land these days.
By the way yesterday's procedure went pretty well, some pain as a result but that should go away in a day or two. I'm taking it easy today and back to work tomorrow.
The breast cancer treatment gap
Technology is advancing along in the diagnosis and treatment of breast cancer. We now have a genetic test which allows patients to find out if they have a genetic mutation which puts them at high risk of the disease. But then we have the gap - if you have the mutation you get two options:
Neither of those are particularly good are they? If you have a mastectomy and an oophorectomy (ovary removal) as Angelina Jolie is, you put yourself instantly into forced menopause at a young age which causes its own set of problems. If you opt for constant monitoring, it can be expensive, stressful, and cause a huge emotional toll on your life.
We need something that breaches this gap that gives women the option to keep their body parts and not have to spend their life in constant monitoring.
Never mind that Myriad Genetics, which is the sole provider of the test because they patented the BRCA genes (until we hear about the Supreme Court ruling) and charges $3000 for each one.
While we have lots of progress, the gaps are becoming more clearly defined. Now its time to focus on the gaps.
- cut off healthy body parts essentialy
- or spend the rest of your life in constant monitoring through mammograms and MRIs.
Neither of those are particularly good are they? If you have a mastectomy and an oophorectomy (ovary removal) as Angelina Jolie is, you put yourself instantly into forced menopause at a young age which causes its own set of problems. If you opt for constant monitoring, it can be expensive, stressful, and cause a huge emotional toll on your life.
We need something that breaches this gap that gives women the option to keep their body parts and not have to spend their life in constant monitoring.
Never mind that Myriad Genetics, which is the sole provider of the test because they patented the BRCA genes (until we hear about the Supreme Court ruling) and charges $3000 for each one.
While we have lots of progress, the gaps are becoming more clearly defined. Now its time to focus on the gaps.
Doctors getting on the cost bandwagon
I have long been whined commented on the high price of medications. I find the high price of new medications combined with the laughable rationale given by the drug manufacturers ridiculous.
Not to put a dollar value on a human life, but a drug that costs upwards of $10,000 per month and may extend life only a few months, is crazy. You can say that few actually pay the full price but we all pay the prices in the form of higher insurance premiums.
A group of more than 100 doctors, mostly oncologists, from fifteen countries, have banded together to blast the high cost of cancer care.
"The doctors and researchers, who specialize in the potentially deadly blood cancer chronic myeloid leukemia, contend in a commentary published online by a medical journal Thursday that the prices of drugs used to treat that disease are astronomical, unsustainable, and perhaps even immoral.
Not to put a dollar value on a human life, but a drug that costs upwards of $10,000 per month and may extend life only a few months, is crazy. You can say that few actually pay the full price but we all pay the prices in the form of higher insurance premiums.
A group of more than 100 doctors, mostly oncologists, from fifteen countries, have banded together to blast the high cost of cancer care.
"The doctors and researchers, who specialize in the potentially deadly blood cancer chronic myeloid leukemia, contend in a commentary published online by a medical journal Thursday that the prices of drugs used to treat that disease are astronomical, unsustainable, and perhaps even immoral.
They suggested that charging a high price for a medicine needed to keep someone alive is profiteering, akin to jacking up the prices of essential goods after a natural disaster."
I like the word 'profiteering' for this price gouging. I mean, how do you justify these prices? If you do a cost benefit analysis as a typical business model, the company pays researchers for years to come up with the drugs. If you say 10 researchers at $100,000 (for easy math) and ten assistant researchers at $50,000 plus $500,000 in equipment for ten years, that would work out to $2 million a year or $20 million total. I know my math is not perfect but you get the idea. Even if I am off by a scale of 10 and the costs are $200 million for ten years of research.
Then take a drug that costs $10,000 per month being taken by 5000 patients that is (pause while I find a calculator) $50 million per month in income. Or in four measly months, they have made back their $200 million.
And even if my costs are off by another factor of ten and we are looking at total costs of $2 billion, they would still get their money back in forty months, or just over three years. Or if the drug is taken by 10,000 patients, they would get their money back in 20 months, or just over 1.5 years.
But I have digressed WAY OFF track. My point is I can't find any justification for the pharma industry's claims of high costs. And now the doctors are claiming them to be profiteering as well. Maybe we need a congressional inquiry - no that would be all sorts of waste of government dollars - but we do need something to make this price gouging end.
Here's a big oops!
A bunch of cancer patients in Canada received less than the specified dose of chemotherapy. Nearly 1200 patients in a group of medical centers and then 186 at another. Oopsy! They do not really say how it happened but its clearly a problem. Chemotherapy doses, I believe, are based on body weight. I think the dose you receive always starts on the higher side to see if its tolerated and then the oncologist can tweak it down.But if the oncologist does all their math and then the dose is too weak, that's a problem.
What is scary is this wasn't discovered until a pharmacy technician noticed it.
The hospitals say they have steps in place for handling chemotherapy drugs but they will work carefully to find out the source of the problem. I certainly hope they do.
While you are in chemo you assume you are getting th eright treatment. But what if the doctor is doing their best and some how your drugs were mislabeled. And what if you were overdosed the 3-20% that was the amount underdosed in this case? You might get pretty damn sick from it. At the very least your blood counts would tank.
Anyway, a big oops here. I hope someone learns a lesson and everyone is okay who got the wrong dose.
What is scary is this wasn't discovered until a pharmacy technician noticed it.
The hospitals say they have steps in place for handling chemotherapy drugs but they will work carefully to find out the source of the problem. I certainly hope they do.
While you are in chemo you assume you are getting th eright treatment. But what if the doctor is doing their best and some how your drugs were mislabeled. And what if you were overdosed the 3-20% that was the amount underdosed in this case? You might get pretty damn sick from it. At the very least your blood counts would tank.
Anyway, a big oops here. I hope someone learns a lesson and everyone is okay who got the wrong dose.
Comparisons and Standards
Take two people with the same ailment in the same room and one of the first things they will do is start comparing their ailments, doctors and treatments. This is normal. (People who have not had the ailment are not allowed in these conversations because they will insist on comparing the treatment their cousin's hairdresser's neighbor's dogwalker's mother in law had for a similar but different ailment, was treated by a different treatment protocol, and then died after month's in pain in a greatly emaciated state.)
Its the same as two people who show up at the same event wearing the same shirt, they talk about where they got it and if they like it, etc.
I have other friends with either fibromyalgia, rheumatoid, breast cancer or thyroid cancer. I don't know anyone else who is lucky enough to have all four - I would like to compare with them. I have talked to each of them about what their treatment is, where they go for treatment, how often the see doctors, what tests they receive and all sorts of other things.
One friend was diagnosed with RA last year and goes to the same hospital as me but has a different rheumatologist and her medication makes her sick to her stomach. Another friend is 8 years into her RA diagnosis and she is on completely different set of medications but her RA has been under control for years now. Mine is still uncontrolled but is slowly being tamed.
When I was at the Thyroid Cancer's Association's (thyca.org) annual conference when it was held in Boston a few years ago, I found I was probably the only person on the planet who did not have an endocrinologist. I promptly corrected that and now have another doctor for twice a year visits.
Some of my breast cancer friends have different follow ups than me. I see my medical oncologist twice a year because I still am on Femara. I see my radiation oncologist twice a year, but I think that will go to once a year shortly. I have my mammograms with my breast surgeon's nurse practitioner annually. If I was not on Femara I would stop seeing my medical oncologist. One appointment each year with a mammogram will be the long term follow up.
My rheumatologist's office sees me every three months for now and I have blood tests every eight weeks. I alternate between a nurse practitioner and a doctor. I am not sure when that will slow down - maybe once my RA starts behaving itself. Other people with RA I think see their doctor less and I am jealous.
Finally I see my pain doctor for my bad back and fibromyalgia every 4-6 months. I have friends with back problems who do not have fibromylagia and they see their pain doctor about the same frequency as me.
This was a long way of asking what if this is not following standard protocols? There are standard national medical protocols set up by a variety of authorities which recommend to doctors on what kind of follow up is appropriate for patients. These change periodically and doctors are supposed to stay up to date.
I read a blog post recently written from the oncologist's point of view on how to tell a patient, their previous doctor was over treating them in their follow up for breast cancer. She cites one story of a woman who was eight years out from an early stage breast cancer diagnosis who was getting blood work and follow ups every three months!
I then tried doing some research to see where my treatment and follow ups fit in with the NCCN guidelines. I had to sign up but I feel pretty comfortable on my level of treatment. But that doesn't mean I won't stop comparing with my friends.
Its the same as two people who show up at the same event wearing the same shirt, they talk about where they got it and if they like it, etc.
I have other friends with either fibromyalgia, rheumatoid, breast cancer or thyroid cancer. I don't know anyone else who is lucky enough to have all four - I would like to compare with them. I have talked to each of them about what their treatment is, where they go for treatment, how often the see doctors, what tests they receive and all sorts of other things.
One friend was diagnosed with RA last year and goes to the same hospital as me but has a different rheumatologist and her medication makes her sick to her stomach. Another friend is 8 years into her RA diagnosis and she is on completely different set of medications but her RA has been under control for years now. Mine is still uncontrolled but is slowly being tamed.
When I was at the Thyroid Cancer's Association's (thyca.org) annual conference when it was held in Boston a few years ago, I found I was probably the only person on the planet who did not have an endocrinologist. I promptly corrected that and now have another doctor for twice a year visits.
Some of my breast cancer friends have different follow ups than me. I see my medical oncologist twice a year because I still am on Femara. I see my radiation oncologist twice a year, but I think that will go to once a year shortly. I have my mammograms with my breast surgeon's nurse practitioner annually. If I was not on Femara I would stop seeing my medical oncologist. One appointment each year with a mammogram will be the long term follow up.
My rheumatologist's office sees me every three months for now and I have blood tests every eight weeks. I alternate between a nurse practitioner and a doctor. I am not sure when that will slow down - maybe once my RA starts behaving itself. Other people with RA I think see their doctor less and I am jealous.
Finally I see my pain doctor for my bad back and fibromyalgia every 4-6 months. I have friends with back problems who do not have fibromylagia and they see their pain doctor about the same frequency as me.
This was a long way of asking what if this is not following standard protocols? There are standard national medical protocols set up by a variety of authorities which recommend to doctors on what kind of follow up is appropriate for patients. These change periodically and doctors are supposed to stay up to date.
I read a blog post recently written from the oncologist's point of view on how to tell a patient, their previous doctor was over treating them in their follow up for breast cancer. She cites one story of a woman who was eight years out from an early stage breast cancer diagnosis who was getting blood work and follow ups every three months!
I then tried doing some research to see where my treatment and follow ups fit in with the NCCN guidelines. I had to sign up but I feel pretty comfortable on my level of treatment. But that doesn't mean I won't stop comparing with my friends.
You can't talk the talk, if you haven't walked the walk.
While I greatly appreciate the efforts of doctors, researchers, nurses, clinicians, and other medical professionals, my feelings have always been that you can't talk the talk, if you haven't walked the walk. You will not 'get it'. Sorry.
A support group facilitator who has not had the ailment being supported, will never, no matter the training, years of leading the group, and any other efforts, will never 'get it'. I'm sorry.
One of the reasons I like my therapist so much is that not only has she had breast cancer, she also has a type of arthritis. She understands. My medical oncologist comes close to understanding as she has treated so many women with breast cancer and is a very caring woman, but she doesn't get it. My radiation oncologist, despite her many years of experience, does not 'get it'.
I have never had children so while I can relate to the problems parents have with their children, I don't really get it completely. I never will. I can live with that.
Dr Susan Love is an example. She is someone who is very well regarded in being an authority in the area of breast cancer, but she never had it. She she never completely 'got it'. In a quote in a recent article she affirmed this:
"While Dr. Love has always been a strong advocate for women undergoing cancer treatment, she says her disease and treatment has strengthened her understanding of what women with breast cancer and other types of cancer go through during treatments.
“There are little things like having numb toes or having less stamina to building muscles back up after a month of bed rest,” she said. “There is significant collateral damage from the treatment that is underestimated by the medical profession. There’s a sense of ‘You’re lucky to be alive, so why are you complaining?’ ”
Dr. Love says her experience has emboldened her in her quest to focus on the causes of disease rather than new drugs to treat it."
So don't let anyone talk the talk to you, if they haven't walked the walk. You should take their advice with a large grain of salt.
A support group facilitator who has not had the ailment being supported, will never, no matter the training, years of leading the group, and any other efforts, will never 'get it'. I'm sorry.
One of the reasons I like my therapist so much is that not only has she had breast cancer, she also has a type of arthritis. She understands. My medical oncologist comes close to understanding as she has treated so many women with breast cancer and is a very caring woman, but she doesn't get it. My radiation oncologist, despite her many years of experience, does not 'get it'.
I have never had children so while I can relate to the problems parents have with their children, I don't really get it completely. I never will. I can live with that.
Dr Susan Love is an example. She is someone who is very well regarded in being an authority in the area of breast cancer, but she never had it. She she never completely 'got it'. In a quote in a recent article she affirmed this:
"While Dr. Love has always been a strong advocate for women undergoing cancer treatment, she says her disease and treatment has strengthened her understanding of what women with breast cancer and other types of cancer go through during treatments.
“There are little things like having numb toes or having less stamina to building muscles back up after a month of bed rest,” she said. “There is significant collateral damage from the treatment that is underestimated by the medical profession. There’s a sense of ‘You’re lucky to be alive, so why are you complaining?’ ”
Dr. Love says her experience has emboldened her in her quest to focus on the causes of disease rather than new drugs to treat it."
So don't let anyone talk the talk to you, if they haven't walked the walk. You should take their advice with a large grain of salt.
Its a bunch of numbers
With a cancer diagnosis you get a bunch of numbers. Prognosis, cancer markers, statistics, blood counts, and more. The numbers can tell us good things and bad things. We can read bad things into good numbers and good things into bad numbers. We can be told that we were too young to get that or too old to get this. We can let the numbers scare the crap out of us.
Or we can let them just be numbers.
I am not normal. I got thyroid cancer when it was very rare - approximately 10,000 cases annually. I got breast cancer when I was younger than expected. I have Rheumatoid Arthritis which was not expected - even with a family history of it. According to the numbers I should be more likely to get a different autoimmune ailment.
I have friends who got early stage cancer diagnoses with relatively rosy prognoses who are no longer with us. I have a friend with an ovarian cancer stage IV diagnosis who is still with us and doing well more than three decades later. I have friends who are still here after stage IV diagnosis who go to treatment, get periodic CT and PET scans and are doing well. I have other stage IV friends who are doing just fine and are not in treatment. I have many friends years and decades after a cancer diagnosis who are still doing fine.
I met another woman online this morning when I read her story about how she shouldn't be here either if she listened to the numbers. Our doctors can only tell us the numbers, but they can't tell us our lives.
Or we can let them just be numbers.
I am not normal. I got thyroid cancer when it was very rare - approximately 10,000 cases annually. I got breast cancer when I was younger than expected. I have Rheumatoid Arthritis which was not expected - even with a family history of it. According to the numbers I should be more likely to get a different autoimmune ailment.
I have friends who got early stage cancer diagnoses with relatively rosy prognoses who are no longer with us. I have a friend with an ovarian cancer stage IV diagnosis who is still with us and doing well more than three decades later. I have friends who are still here after stage IV diagnosis who go to treatment, get periodic CT and PET scans and are doing well. I have other stage IV friends who are doing just fine and are not in treatment. I have many friends years and decades after a cancer diagnosis who are still doing fine.
I met another woman online this morning when I read her story about how she shouldn't be here either if she listened to the numbers. Our doctors can only tell us the numbers, but they can't tell us our lives.
I am making this a positive thing
Although I wont take my last Femara tablet until I see my oncologist on Monday, just to be sure there are not any last minute positive studies that will show Femara forever will prevent any future return of cancer cooties, I am making this a positive thing - as much as I can.
Breast cancer treatment puts you into menopause. My breast cancer treatment started on August 1, 2007 and my hot flashes began shortly there after. Tamoxifen continued them. Femara continued them. I am not sure I remember life without hot.flashes. This is now January 5, 2013 which means its been 5 years and 5 months of hot flashes. They can be convenient on a cold winter day but not really. No never really. Hot flashes suck.
So now this cancer treatment cliff has a positive spin - no more hot flashes.
There are other side effects from Femara:
I can't say that I have had all of these but I really wouldn't miss them. I will confer with my oncologist and see how much better I might feel physically without Femara. Its the mental thing that is still getting to me.
Breast cancer treatment puts you into menopause. My breast cancer treatment started on August 1, 2007 and my hot flashes began shortly there after. Tamoxifen continued them. Femara continued them. I am not sure I remember life without hot.flashes. This is now January 5, 2013 which means its been 5 years and 5 months of hot flashes. They can be convenient on a cold winter day but not really. No never really. Hot flashes suck.
So now this cancer treatment cliff has a positive spin - no more hot flashes.
There are other side effects from Femara:
- dizziness, drowsiness, weakness, tired feeling;
- hot flashes, warmth in your face or chest;
- flushing (warmth, redness, or tingly feeling);
- headache;
- nausea, constipation;
- bone pain, muscle or joint pain;
- numbness, tingling, weakness, or stiffness in your hand or fingers;
- pain in your hand that spreads to your arm, wrist, forearm, or shoulder;
- night sweats; or
- weight gain.
I can't say that I have had all of these but I really wouldn't miss them. I will confer with my oncologist and see how much better I might feel physically without Femara. Its the mental thing that is still getting to me.
Approaching the cliff
I have my own personal cliff that I am facing. And it has nothing to do with finances. Money isn't everything as the old saw might say. My cliff involves my health, as always. I don't think of my health as a series of cliffs in anyway. It is a series of disasters, appointments, and procedures, where I might feel a pinch.
But on Monday I face the breast cancer treatment cliff. I will stop taking Femara. That means my breast cancer treatment will end and I will go on my merry little way.... WAIT, BACK UP.... Cancer treatment can't end. I need to have my hand held for the rest of my life with this cancer shit.
Deep breath. Well if I am not in treatment any more they can still hold my hand. Can't they? I have been in cancer treatment continuously since May 2007. I have had surgery, chemotherapy, radiation, Tamoxifen, and then Femara. Through this whole process there has always been another step to look forward to. But not any more. I'm done! Yippee, oh shit.
On Monday my oncologist and I will discuss this again. She already brought it up when I saw her last fall. I thought I would be ready, I enjoyed the advance notice. I thought I was running out of pills a few weeks ago and even got a refill of Femara so I had enough to get me to my next appointment. I haven't even opened that bottle yet.
I know we will talk about how Femara has done a number on my bones and I may need some additional treatment to get my bone density back up to where it is supposed to be.
I know I will also continue to meet with the surgeon annually for follow up mamograms, the radiation oncologist for annual follow ups, and my primary care. And my pain doctor, rheumatologist, and all those other doctors so I guess I will get some care that will include some hand holding I hope.
But now I am facing the Emerald City at the end of the Yellow Brick Road through Cancerland. (Can you tell we wanted The Wizard of Oz recently? So what's in the Emerald city - healthy bones, healthy me, etc? Or is there just a little man behind the curtain running the world in front of the cliff?
But on Monday I face the breast cancer treatment cliff. I will stop taking Femara. That means my breast cancer treatment will end and I will go on my merry little way.... WAIT, BACK UP.... Cancer treatment can't end. I need to have my hand held for the rest of my life with this cancer shit.
Deep breath. Well if I am not in treatment any more they can still hold my hand. Can't they? I have been in cancer treatment continuously since May 2007. I have had surgery, chemotherapy, radiation, Tamoxifen, and then Femara. Through this whole process there has always been another step to look forward to. But not any more. I'm done! Yippee, oh shit.
On Monday my oncologist and I will discuss this again. She already brought it up when I saw her last fall. I thought I would be ready, I enjoyed the advance notice. I thought I was running out of pills a few weeks ago and even got a refill of Femara so I had enough to get me to my next appointment. I haven't even opened that bottle yet.
I know we will talk about how Femara has done a number on my bones and I may need some additional treatment to get my bone density back up to where it is supposed to be.
I know I will also continue to meet with the surgeon annually for follow up mamograms, the radiation oncologist for annual follow ups, and my primary care. And my pain doctor, rheumatologist, and all those other doctors so I guess I will get some care that will include some hand holding I hope.
But now I am facing the Emerald City at the end of the Yellow Brick Road through Cancerland. (Can you tell we wanted The Wizard of Oz recently? So what's in the Emerald city - healthy bones, healthy me, etc? Or is there just a little man behind the curtain running the world in front of the cliff?
The femara dilemma
With breast cancer there is diagnosis, stress, depression, surgery, more stress, lymphedema worries, chemotherapy, baldness, neuropathy, weight gain, radiation, peeling skin, fatigue, stress, tamoxifen/aromatase inhibitors, slightly less stress, and through all of this is the ongoing care of your oncologists, surgeons, and other doctors.
I was diagnosed at the end of May 2007. I had surgery in both June and July. I started chemo on August 1 (some dates just stick in your brain) and finished chemo in mid December (where I bought myself an expensive watch as a gift), had a bad MRI and had more surgery (benign but stressful). January 2008 I began radiation and ended at the end of February. In about January sometime I was put on Tamoxifen for 2+ years. June 2010 I switched to Femara for another 2+ years. In September this year when I saw my oncologist she discussed going off Femara at my next visit to her which is next month.
As I filled up my weekly pill boxes I contemplated the fact that I don't have enough Femara tables to get me to my next appointment which is a paltry 15 days away. I have been going back and forth on this one. I know this is an emotional decision. There are no real benefits to taking Femara longer. But this is my last breast cancer treatment - that's it. No more. None. I just go to visits with doctors periodically where they will poke and pry and ask me how I feel (and look for potential rogue cancer cooties).
But emotionally am I ready to 'pull the plug' on all my treatment? I know this is why my medical oncologist brought this up when I met with her last fall. She wanted me to get prepared for this. At first I thought it was no big deal. But it is.
I have been waffling on this and caved in. This morning I placed a mail order to refill my Femara. It should arrive here just before I run out. Which will be a few days before my appointment. I would be happy to take fewer prescriptions but this is the last means of support against the evil cancer cooties.
I think at my appointment I will discuss my emotional attachment to Femara with my oncologist. My inner wimp is prevailing here at this point. Maybe I'll bring my refill with me and turn them over to her if I can't cut myself off.
I was diagnosed at the end of May 2007. I had surgery in both June and July. I started chemo on August 1 (some dates just stick in your brain) and finished chemo in mid December (where I bought myself an expensive watch as a gift), had a bad MRI and had more surgery (benign but stressful). January 2008 I began radiation and ended at the end of February. In about January sometime I was put on Tamoxifen for 2+ years. June 2010 I switched to Femara for another 2+ years. In September this year when I saw my oncologist she discussed going off Femara at my next visit to her which is next month.
As I filled up my weekly pill boxes I contemplated the fact that I don't have enough Femara tables to get me to my next appointment which is a paltry 15 days away. I have been going back and forth on this one. I know this is an emotional decision. There are no real benefits to taking Femara longer. But this is my last breast cancer treatment - that's it. No more. None. I just go to visits with doctors periodically where they will poke and pry and ask me how I feel (and look for potential rogue cancer cooties).
But emotionally am I ready to 'pull the plug' on all my treatment? I know this is why my medical oncologist brought this up when I met with her last fall. She wanted me to get prepared for this. At first I thought it was no big deal. But it is.
I have been waffling on this and caved in. This morning I placed a mail order to refill my Femara. It should arrive here just before I run out. Which will be a few days before my appointment. I would be happy to take fewer prescriptions but this is the last means of support against the evil cancer cooties.
I think at my appointment I will discuss my emotional attachment to Femara with my oncologist. My inner wimp is prevailing here at this point. Maybe I'll bring my refill with me and turn them over to her if I can't cut myself off.
Squish the life out of them
Of all the weird cancer treatments I have heard, this one takes the cake. Or crunch. Here it is:
Squish the malignant cells back into normal size and they revert back to normal breast cancer cells.
I am sure squish is the technical term here and you will only 'feel a pinch'.
This study was presented at the American Society for Cell Biology in San Francisco recently so it wasn't done by Dr Jekyll with Igor as an assistant in the dungeon basement of an Eastern European castle.
Before you channel a mammogram machine gone bad, its done at the cell level.
Venugopalan and collaborators grew malignant breast epithelial cells in a gelatin-like substance that had been injected into flexible silicone chambers. The flexible chambers allowed the researchers to apply a compressive force in the first stages of cell development.
Over time, the compressed malignant cells grew into more organized, healthy-looking acini that resembled normal structures, compared with malignant cells that were not compressed. The researchers used time-lapse microscopy over several days to show that early compression also induced coherent rotation in the malignant cells, a characteristic feature of normal development.
Notably, those cells stopped growing once the breast tissue structure was formed, even though the compressive force had been removed.
[Read more at: http://medicalxpress.com/news/2012-12-revert-breast-cancer-cells.html#jCp]
But I am sure you will still only 'feel a pinch'.
Squish the malignant cells back into normal size and they revert back to normal breast cancer cells.
I am sure squish is the technical term here and you will only 'feel a pinch'.
This study was presented at the American Society for Cell Biology in San Francisco recently so it wasn't done by Dr Jekyll with Igor as an assistant in the dungeon basement of an Eastern European castle.
Before you channel a mammogram machine gone bad, its done at the cell level.
Venugopalan and collaborators grew malignant breast epithelial cells in a gelatin-like substance that had been injected into flexible silicone chambers. The flexible chambers allowed the researchers to apply a compressive force in the first stages of cell development.
Over time, the compressed malignant cells grew into more organized, healthy-looking acini that resembled normal structures, compared with malignant cells that were not compressed. The researchers used time-lapse microscopy over several days to show that early compression also induced coherent rotation in the malignant cells, a characteristic feature of normal development.
Notably, those cells stopped growing once the breast tissue structure was formed, even though the compressive force had been removed.
[Read more at: http://medicalxpress.com/news/2012-12-revert-breast-cancer-cells.html#jCp]
But I am sure you will still only 'feel a pinch'.
Life after cancer
There is a term for life after cancer. It is 'Survivorship'. I am not a fan of the word at all. I consider survivor a label and all I have ever survived is a bunch of doctor appointments. But I digress.
There is now focus on 'survivorship' studies or the lack of them. Doctors focus on treating patients but historically have been paying less attention to the patient's quality of life issues after treatment. It is not uncommon for cancer treatment to leave patients with a range of issues. This new field is also called 'patient activation' (which isn't much better than the 's-word'. It provides "education, resources, and services for issues of survivors such as sexuality, cognitive issues, fertility, neuropathy, returning back to primary care, depression and late effects such as second cancers and cardiac issues."
If you think about how harsh cancer treatment really is compounded by the emotions behind a diagnosis, it is not surprising that the patients are left with such a range issues.
It is just sad that it has taken modern medicine so long to realize that we do need help after treatment.
There is now focus on 'survivorship' studies or the lack of them. Doctors focus on treating patients but historically have been paying less attention to the patient's quality of life issues after treatment. It is not uncommon for cancer treatment to leave patients with a range of issues. This new field is also called 'patient activation' (which isn't much better than the 's-word'. It provides "education, resources, and services for issues of survivors such as sexuality, cognitive issues, fertility, neuropathy, returning back to primary care, depression and late effects such as second cancers and cardiac issues."
If you think about how harsh cancer treatment really is compounded by the emotions behind a diagnosis, it is not surprising that the patients are left with such a range issues.
It is just sad that it has taken modern medicine so long to realize that we do need help after treatment.
Its a vast conspiracy
Tamoxifen has been known to cause endometrial cancer. Chemotherapy in general causes chemobrain and temporary or permanent neuropathy. Hormonal treatments cause weight gain. But you are supposed to stay thin to prevent increasing your risk of recurrence.
I can go on and on.
Its a vast conspiracy I tell you.
Will I always compare fatigue now to cancer treatment fatigue?
Anyone who has gone through chemo can tell you about fatigue where you sit stupidly on the living sofa/arm chair staring blankly at a television screen not remembering a thing you watched. Fatigue where sleeping late turns into an afternoon nap. Being so tired you felt like you were hit by a truck upon waking up in the morning.
Last night I went to a craft fair where I had a table (anyone want to buy a hand knit or crocheted scarf?) that ended at 9pm which is VERY close to my bedtime these days. As I was driving home I thought I was really tired, like chemotherapy tired or end of radiation treatment tired. But I am not in chemo or finishing radiation, I am living the rheumatoid/fibromyalgia life where fatigue is part of the package. How fun (not really).
Then I started thinking again (I know I really shouldn't do this - think that is) and wondered am I forever going to compare my level of fatigue with how I felt during cancer treatment? I mean I used to think I was feeling exhausted and tired like I had skied hard, or climbed a relatively large mountain, or spent the day running around on the beach. Now I just compare it with chemo or radiation fatigue. Well grr.
I think my life needs a better perspective so I can skip thinking about chemo and radiation (I am sure that will be SO easy to do) and think being tired after something fun. And I'll have to take up napping and refine it to an art form.
Last night I went to a craft fair where I had a table (anyone want to buy a hand knit or crocheted scarf?) that ended at 9pm which is VERY close to my bedtime these days. As I was driving home I thought I was really tired, like chemotherapy tired or end of radiation treatment tired. But I am not in chemo or finishing radiation, I am living the rheumatoid/fibromyalgia life where fatigue is part of the package. How fun (not really).
Then I started thinking again (I know I really shouldn't do this - think that is) and wondered am I forever going to compare my level of fatigue with how I felt during cancer treatment? I mean I used to think I was feeling exhausted and tired like I had skied hard, or climbed a relatively large mountain, or spent the day running around on the beach. Now I just compare it with chemo or radiation fatigue. Well grr.
I think my life needs a better perspective so I can skip thinking about chemo and radiation (I am sure that will be SO easy to do) and think being tired after something fun. And I'll have to take up napping and refine it to an art form.
News flash: confusion among cancer patients
That's not really news. Nor is it the real title. This is the real one:
Did having cancer change you?
They did a new study (because these pesky researchers need to stay employed) on how people who had been diagnosed with and treated for cancer were doing both physically and medically after treatment.
Well its about time. What did they think that after our oncologists and surgeons send us on our merry way and only want to see us yearly instead of weekly we would just be fine? Seriously. For patients, it has always been a cliff where treatment ends and we are supposed to cope just fine as we switch from constant monitoring to yearly check ups. The doctors abruptly cut the cord. Many patients have an emotional upheaval that coincides with this transition and seek additional support. Its nice that the medical field is taking a closer look at how we cope in the ensuing years.
The study looked at, from the patient's perspective, physical functioning, pain, fatigue, and depression. They compared them to normal people who had never been diagnosed with cancer and found that:
As we are aware I am not a doctor, researcher or anyone qualified in anyway shape or form to do research as I a merely a cancer person. BUT, as I look at the different cancers they list and the outcome issues, I had a few comments (of course);
Keep researching this one. There are lots of us who would be happy to help in the research.
Well its about time. What did they think that after our oncologists and surgeons send us on our merry way and only want to see us yearly instead of weekly we would just be fine? Seriously. For patients, it has always been a cliff where treatment ends and we are supposed to cope just fine as we switch from constant monitoring to yearly check ups. The doctors abruptly cut the cord. Many patients have an emotional upheaval that coincides with this transition and seek additional support. Its nice that the medical field is taking a closer look at how we cope in the ensuing years.
The study looked at, from the patient's perspective, physical functioning, pain, fatigue, and depression. They compared them to normal people who had never been diagnosed with cancer and found that:
- People who had breast, prostate or melanomas had the same or better quality of life as the people who had never had cancer.
- People who had cervical, blood, or colorectal cancers and cancers with a 5 year survival rate of less than 25% (liver, pancreas, and lung) had worse physical health related quality of life.
- People with cervical cancer and cancers with low survival rates had worse mental quality of life. The goal is to check again in five years and see how these groups are doing with the advances in treatment.
As we are aware I am not a doctor, researcher or anyone qualified in anyway shape or form to do research as I a merely a cancer person. BUT, as I look at the different cancers they list and the outcome issues, I had a few comments (of course);
- The people who did well were the ones who had the 'high visibility' cancers - breast, prostate, and melanoma. I think of these as high visibility as they get a lot of press. We have pinkificiation for breast cancer. We have PSA tests and possible over diagnosis of prostate cancer and its all over the media. Melanoma is ingrained in all of us as we use sunscreen since birth nowadays. These cancers are talked about, videoed, profiled, and media hyped to no end.
- The people who did poorly physically had the cancers that either had low survival rates or less popular/lower profile cancers. Are they less acceptable cancers to get? Are their treatment protocols more 'damaging' to the human body?
- The people who did poorly mentally had cancers with lower survival rates. This is the most logical to me. If you are told you have cancer and have a low chance of living more than a few years, what is your mental state going to be?
Keep researching this one. There are lots of us who would be happy to help in the research.
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