You are diagnosed with cancer after some tests. Then you are sent for more tests to figure out the best course of treatment. You feel tested to death - too many injections, IVs, scans, and time in waiting rooms. Finally you get a course of treatment. Did you really need all those tests?
New diagnostic tests keep being developed to help determine the best course of treatment for a patient. But how much of their results are really helping doctors and patients? A recent study confirmed that the doctors see the tests as confirmation of their recommendations. And that patients do not really understand the results.
I have been on numerous breast cancer boards where women question the significance of the results of their Oncotype DX and other tests. "My results were this and my doctor said this, what should I do?"
"Fourteen oncologists were surveyed at teaching and community
hospitals in Toronto. Most said the tests enhanced their confidence in
deciding whether to recommend chemotherapy in cases where the best
course of action was unclear to both the physician and the patient -
especially when they were truly undecided. While most said the test
supported their assessment rather than altering their practice, one
oncologist described the test as a "tie-breaker."
But they raised concerns about overuse and inappropriate use of the
test; over-reliance on the test relative to other, more established
pathological indicators; the fact that testing takes places in only one
lab in California; aggressive marketing of the test and its high cost,
about $4,000.
Dr. Bombard said these reservations were consistent with general
concerns about overuse of laboratory testing, which has increased
rapidly, contributing to the financial strain on health care systems.
Estimates suggest that 10 to 50 per cent of lab tests in Canada might be
unnecessary and one-third of U.S. health-care spending results from
overuse or misuse of tests, procedures and therapies."
This last sentence sums it up for me. Do we need all these damn tests? Just because we can test for something do we really need to?
Showing posts with label testing. Show all posts
Showing posts with label testing. Show all posts
Wednesday, March 11, 2015
Tuesday, November 12, 2013
Delays can cost lives
Back in early Pinktober, Good Morning America had a 'Pink' Day and had one of their staff, Amy Robach, have an on air mastectomy. Now she is told that she has breast cancer and that the mastectomy saved her life. Now that may be a bit overly dramatic but she had skipped her mammogram at age 40.
A family member, who shall remain nameless, was given a pass by their PCP for a colonoscopy at age 51 instead of age 50. At 51, they had a giant malignant polyp and they could not get clear margins, so they had a colectomy to ensure there was no more cancer. What if they had continued to skip their colonsocopies?
A new study found that young women diagnosed with breast cancer who do not have a lot of money face delays in their treatment which could lead to the higher mortality rates experienced by them.
What does this tell us? Delays are not good. It probably is not a good idea to delay testing and treatment when dealing with cancer.
PS Obviously it is not a profound kind of day for me. This was a pretty lame post.
A family member, who shall remain nameless, was given a pass by their PCP for a colonoscopy at age 51 instead of age 50. At 51, they had a giant malignant polyp and they could not get clear margins, so they had a colectomy to ensure there was no more cancer. What if they had continued to skip their colonsocopies?
A new study found that young women diagnosed with breast cancer who do not have a lot of money face delays in their treatment which could lead to the higher mortality rates experienced by them.
What does this tell us? Delays are not good. It probably is not a good idea to delay testing and treatment when dealing with cancer.
PS Obviously it is not a profound kind of day for me. This was a pretty lame post.
Friday, August 23, 2013
New Breast Cancer Guidelines
The St Gallen International Breast Cancer Guidelines were recently updated to include the Oncotype DX test for breast cancer as the only screening tool for women with early stage ER+/Her2- breast cancer to determine the benefit of chemotherapy.
On some levels this is great news but again it is not for all women. The criteria for the Oncotype DX test for breast cancer are:
"You may be a candidate for the Oncotype DX breast cancer test if you are medically eligible for chemotherapy and:
I have digressed. I do like the fact that this test is available for some if not all. I do like the fact that it is covered by most insurance companies. I do like the fact that it helps determine if a patient will benefit from chemotherapy before they receive it. I do like the fact that it is part of standards for treatment.
I do not like the fact that it is still part of the conversation about treatment - do you remember the little analogy - an ounce of prevention is worth a pound of cure? Why can't we put that into the guidelines?
On some levels this is great news but again it is not for all women. The criteria for the Oncotype DX test for breast cancer are:
"You may be a candidate for the Oncotype DX breast cancer test if you are medically eligible for chemotherapy and:
- You have been diagnosed with stage I,II or IIIa invasive breast cancer.*
- Your breast cancer is estrogen-receptor positive (ER+) and Human Epidermal growth factor Receptor -negative (HER2-) and you do not have lymph node involvement (also known as lymph-node-negative breast cancer).
- You are a post-menopausal woman recently diagnosed with node positive, hormone-receptor-positive, Human Epidermal growth factor Receptor -negative breast cancer"
I have digressed. I do like the fact that this test is available for some if not all. I do like the fact that it is covered by most insurance companies. I do like the fact that it helps determine if a patient will benefit from chemotherapy before they receive it. I do like the fact that it is part of standards for treatment.
I do not like the fact that it is still part of the conversation about treatment - do you remember the little analogy - an ounce of prevention is worth a pound of cure? Why can't we put that into the guidelines?
Saturday, May 25, 2013
What would you pay?
Would you pay $4000 for something that is only should cost $99? Apparently women who get a BRCA test pay nearly $4000 for something that should cost around $99. This because of the monopoly Myriad Therapeutics has by patenting the genes. I know I have logged about this before so may you call me redundant.
We are still waiting for the Supreme Court's response to the argument that gene's can't be patented. But Myriad is so sure that there will not be a problem for them, they are planning further profits later this year.
"Without competition, Myriad can effectively charge whatever it wants. Later this year, the company said it would begin incorporating the BRCA test into a 25-gene cancer-risk evaluation and phase out the à la carte BRCA test by 2015. For that broader test, it projects a gross profit margin of 87 percent."
I wouldn't mind an 87% profit on my investments. Would you? I'm just awaiting the Supreme Court''s response.
We are still waiting for the Supreme Court's response to the argument that gene's can't be patented. But Myriad is so sure that there will not be a problem for them, they are planning further profits later this year.
"Without competition, Myriad can effectively charge whatever it wants. Later this year, the company said it would begin incorporating the BRCA test into a 25-gene cancer-risk evaluation and phase out the à la carte BRCA test by 2015. For that broader test, it projects a gross profit margin of 87 percent."
I wouldn't mind an 87% profit on my investments. Would you? I'm just awaiting the Supreme Court''s response.
Monday, April 15, 2013
Breast Cancer Patients Go to Washington
Today is a big day. Around here it is Patriots Day which means there are parades (mostly yesterday), Revolutionary re-enactments, pancake breakfasts, award ceremonies, a little road race called the Boston Marathon, and a minor hint of spring - its a tropical 32 degrees right now.
In Washington DC, its typical pomp and circumstance, the ego battles, and political denials, as well as oral arguments in the Supreme Court on the patent-ability of human genes and the genome. The ACLU, breast cancer patients, scientists, Biotech companies, and more are all meeting together to hear the oral arguments and then the Supreme Court will make some big decisions.
At the root of the matter is are human genes and the genome patentable? They have been awarded patents in prior years. For example, Myriad Genetics patented BRCA1 and BRCA2 genes using the grounds that they isolated them so they should be able to patent them. Then they developed the breast cancer BRCA tests which they sell for a paltry $3340 and have earned $2.1 billion on these tests. They want to retain their patent because it makes them rich. Some scientists say the gene patents allow them to earn money from their research.
On the other side, people like the ACLU say they are naturally occurring and therefore should not be patented. And that the patents actually restrict research.
Personally I don't think naturally occurring things should be able to be patented. Does someone want to patent the crab grass in my lawn? Then they can pull it out because I'm not going to pay them for it (free weeding).
Maybe they can patent the tests that are done using the genes but not the genes themselves. Other people could then patent their own tests and there would be competition and someone wouldn't be $2.1 billion richer on a test that some insurance companies won't cover because of the cost. (Patients first please.)
Medical research often includes genetics and molecular level testing these days. Our legal system needs to catch up to current scientific research. If genes are patented, will we have to start tattooing their bodies to show where other people own bits and pieces? What if someone patented the human heart, would they get a fee every time someone had heart surgery. Let's think rationally here.
In Washington DC, its typical pomp and circumstance, the ego battles, and political denials, as well as oral arguments in the Supreme Court on the patent-ability of human genes and the genome. The ACLU, breast cancer patients, scientists, Biotech companies, and more are all meeting together to hear the oral arguments and then the Supreme Court will make some big decisions.
At the root of the matter is are human genes and the genome patentable? They have been awarded patents in prior years. For example, Myriad Genetics patented BRCA1 and BRCA2 genes using the grounds that they isolated them so they should be able to patent them. Then they developed the breast cancer BRCA tests which they sell for a paltry $3340 and have earned $2.1 billion on these tests. They want to retain their patent because it makes them rich. Some scientists say the gene patents allow them to earn money from their research.
On the other side, people like the ACLU say they are naturally occurring and therefore should not be patented. And that the patents actually restrict research.
Personally I don't think naturally occurring things should be able to be patented. Does someone want to patent the crab grass in my lawn? Then they can pull it out because I'm not going to pay them for it (free weeding).
Maybe they can patent the tests that are done using the genes but not the genes themselves. Other people could then patent their own tests and there would be competition and someone wouldn't be $2.1 billion richer on a test that some insurance companies won't cover because of the cost. (Patients first please.)
Medical research often includes genetics and molecular level testing these days. Our legal system needs to catch up to current scientific research. If genes are patented, will we have to start tattooing their bodies to show where other people own bits and pieces? What if someone patented the human heart, would they get a fee every time someone had heart surgery. Let's think rationally here.
Thursday, May 24, 2012
Angiogenesis
I only learned about angiogenesis last year. Not having recently gone to medical school, I turned to my friend, Mr. Google (as opposed to Dr. Google) for a definition. Wikipedia says:
"Angiogenesis is the physiological process involving the growth of new blood vessels from pre-existing vessels."
It goes on to add:
"Angiogenesis may be a target for combating diseases characterized by either poor vascularisation or abnormal vasculature."
Now we have gotten through a LOT of big words this morning.I have found an article explaining how contrast MRI may predict how women would respond to chemotherapy and possibly allow them to avoid mastectomies. Another (as if we needed it) research study was done and found:
"... contrast-enhanced MRIs can work as an early predictor of the body’s response to neoadjuvant chemotherapy by measuring the blood vessel formation in tumors, a process known as angiogenesis. Angiogenesis is considered an earlier and more accurate marker of tumor response."
"... MRIs can detect tumor changes as early as the first cycle of chemotherapy. If the tumor appears smaller and less bright on the scan, it can be interpreted as a sign that the chemotherapy may be effective and eventually lead to tumor eradication."
However this is all new and exciting but the results will be published later this year and then we need to see if this is coming soon to a hospital near you (and me). So one big word I learned last year combined with a technology I have already experienced has created progress. We may have to wait but in this case progress is progress.
"Angiogenesis is the physiological process involving the growth of new blood vessels from pre-existing vessels."
It goes on to add:
"Angiogenesis may be a target for combating diseases characterized by either poor vascularisation or abnormal vasculature."
Now we have gotten through a LOT of big words this morning.I have found an article explaining how contrast MRI may predict how women would respond to chemotherapy and possibly allow them to avoid mastectomies. Another (as if we needed it) research study was done and found:
"... contrast-enhanced MRIs can work as an early predictor of the body’s response to neoadjuvant chemotherapy by measuring the blood vessel formation in tumors, a process known as angiogenesis. Angiogenesis is considered an earlier and more accurate marker of tumor response."
"... MRIs can detect tumor changes as early as the first cycle of chemotherapy. If the tumor appears smaller and less bright on the scan, it can be interpreted as a sign that the chemotherapy may be effective and eventually lead to tumor eradication."
However this is all new and exciting but the results will be published later this year and then we need to see if this is coming soon to a hospital near you (and me). So one big word I learned last year combined with a technology I have already experienced has created progress. We may have to wait but in this case progress is progress.
Tuesday, May 1, 2012
Predictive risk screening
We have all heard about genetic testing to see if you are more likely to get an ailment or not. I am not sure if I would do that or not simply because I am not sure I want to know. I can look at my family history without a genetic test to get an idea of what I might get. Oh, but there were no cases of breast or thyroid cancer in my family....
Actually the vast majority of breast and other cancers are not caused by genetic or family history. They just happen. There are risk factors that are known but the real reason of why someone gets it instead of someone else is not really known. But there is a fear among women regarding getting breast cancer. A lot of women are just scared of it.
So even though we do not have the cause ironed out, a company, BREVAGen, has developed a predictive risk screening test to see if women are more or less likely to get the disease. And they are selling it.
BREVAGen is a clinically validated predictive risk test that more
accurately identifies a woman's unique risk of developing sporadic,
estrogen-positive breast cancer. BREVAGen examines a woman's clinical
risk factors, such as their lifetime exposure to estrogen, combined with
scientifically validated markers to determine each patient's
personalized five-year and lifetime risk of developing breast cancer.'
Hmmm... so they are analyzing exposure to risk factors. But that does not give us a cure.This is part of the role personalized medicine plays in helping treat patients. I am completely for personalized medicine but I am not sure what I think a company making money off analysis of risk factors as opposed to finding a cure. Yes this will help in getting the right women early screening and allow for early detection. But does it help prevent cancer? Not really. Does it help determine the cause of cancer? No. Does it prey on the fears of women who are concerned about developing breast cancer? Possibly.
Actually the vast majority of breast and other cancers are not caused by genetic or family history. They just happen. There are risk factors that are known but the real reason of why someone gets it instead of someone else is not really known. But there is a fear among women regarding getting breast cancer. A lot of women are just scared of it.
So even though we do not have the cause ironed out, a company, BREVAGen, has developed a predictive risk screening test to see if women are more or less likely to get the disease. And they are selling it.
'"The vast majority of women who get breast cancer do not have familial
history such as first degree relatives with cancer. For those patients,
BREVAGen allows me to make informed decisions based on their individual
risk indicators and genetics"... "Determining the
appropriate level of surveillance is critical for patient compliance,
early cancer detection, and controlling healthcare costs. BREVAGen helps
me identify those patients that benefit from a more intensive
surveillance. This proactive approach might include breast MRI and/or
the use of anti-estrogen medications, coupled with patient lifestyle
changes, all focused on the prevention or early detection of breast
cancer."
Hmmm... so they are analyzing exposure to risk factors. But that does not give us a cure.This is part of the role personalized medicine plays in helping treat patients. I am completely for personalized medicine but I am not sure what I think a company making money off analysis of risk factors as opposed to finding a cure. Yes this will help in getting the right women early screening and allow for early detection. But does it help prevent cancer? Not really. Does it help determine the cause of cancer? No. Does it prey on the fears of women who are concerned about developing breast cancer? Possibly.
Wednesday, March 28, 2012
Who owns that gene?
That depends on who you ask. Personally I find the idea that someone can own the patent on a gene which was created naturally in my body a bit creepy. Now the court is saying the same thing. Here is a summary of what my tiny brain understands:
Great, what I see here are a lot of lawyers getting rich off greedy companies (assisted by the Patent office) while patients, cancer research, personalized medicine, and genetic research. But I think the odds are in favor here that this will be throw out as they Supreme Court tossed it already. (Or at least I hope so because I believe patients should come first and corporate greed should come last.)
- The US Patent office has been issuing patents on genes for about 30 years.
- Myriad Genetics developed the BRCA 1 and 2 tests and patented the two genes.
- Anyone who wanted to perform a BRCA test to test for the breast/ovarian cancer gene had to pay a fee to Myriad
- People sued and a judge in 2010 invalidated the BRCA patents.
- Myriad continued the fight and it got to the Supreme Court (even though they are very busy with that healthcare reform stuff) threw out the case on the grounds of another case which said the laws of nature are not patentable.
- This not the final ruling as it returns to the district court for further ruling. So stay tuned...
Great, what I see here are a lot of lawyers getting rich off greedy companies (assisted by the Patent office) while patients, cancer research, personalized medicine, and genetic research. But I think the odds are in favor here that this will be throw out as they Supreme Court tossed it already. (Or at least I hope so because I believe patients should come first and corporate greed should come last.)
Saturday, December 24, 2011
More pictures!
Are more pictures better? Back in the days of black and white cameras on tripods, a professional photographer would come and take a single posed shot of serious looking people dressed in black. After being hand developed a single picture was produced with no copies to send out to friends a relatives. Then personal cameras came into play and little towers of flash cubes were added on. Film was sent out to be developed and you crossed your fingers until they came back to hope that everything was in focus. You might take a couple to double your luck but still a lot was left up to chance. Then digital cameras came along and we clicked away like mad - shared them everywhere. Focus and aim become less important as quantity increases your odds for a good shot. All of our foibles in living color are available worldwide in this digital age.
In the world of medicine, photography, a/k/a imaging, has grown by leaps and bounds. Do you remember going to the hospital and you were offered an xray to see inside you before surgery? Now a single xray is replaced by ultrasounds, CT scans, PET scans, MRIs and more. Is this better or not?
Recent studies (yes we needed more medical studies) showed that in the early 1990s approximately 5% of women had two or more imaging sessions prior to breast cancer surgery. In 2005, more than 20% had two or more imaging sessions. TThere have been significant advancements in medical technology since 1992 so there are many more pictures available. The theory is the more testing that is done the better the doctor is able to determine the course of treatment - whether for breast cancer or other ailments. But these additional tests come at a cost - both emotional and financial. Every trip back to the hospital for more tests is another emotional roller coaster and another dip into the financial hole.
Are they worth it? It seems the jury is still out on that one. They need another study to tell the doctors if the additional tests are worth while. The numbers have been analyzed on the quantity of tests but not on the outcomes. The current advice is that if your doctor sends you off for pictures, can the trips be combined so only have to take one trip and not two or more. Well that's a big help (not). I think they have plenty of pictures of my insides and outsides but somehow they always seem to want more.
In the world of medicine, photography, a/k/a imaging, has grown by leaps and bounds. Do you remember going to the hospital and you were offered an xray to see inside you before surgery? Now a single xray is replaced by ultrasounds, CT scans, PET scans, MRIs and more. Is this better or not?
Recent studies (yes we needed more medical studies) showed that in the early 1990s approximately 5% of women had two or more imaging sessions prior to breast cancer surgery. In 2005, more than 20% had two or more imaging sessions. TThere have been significant advancements in medical technology since 1992 so there are many more pictures available. The theory is the more testing that is done the better the doctor is able to determine the course of treatment - whether for breast cancer or other ailments. But these additional tests come at a cost - both emotional and financial. Every trip back to the hospital for more tests is another emotional roller coaster and another dip into the financial hole.
Are they worth it? It seems the jury is still out on that one. They need another study to tell the doctors if the additional tests are worth while. The numbers have been analyzed on the quantity of tests but not on the outcomes. The current advice is that if your doctor sends you off for pictures, can the trips be combined so only have to take one trip and not two or more. Well that's a big help (not). I think they have plenty of pictures of my insides and outsides but somehow they always seem to want more.
Wednesday, December 14, 2011
Thyroid cancer information
Finally I have found a nice little compact resource on thyroid cancer. It is published by the Thyroid Cancer Survivor's Association (www.thyca.org). There is not a lot of information out there about thyroid cancer because it is relatively rare - about 30,000 cases annually out of the 1.6 million total cases of cancer in the US each year. Also, its is one of those so called 'good' cancers (and again if you say it to me, I'll be forced to smack you - no cancer is a good cancer) as the survival rate is relatively high.
However the result of treatment for thyroid cancer is a lifetime of monitoring to keep your thyroid levels right - your thyroid levels can affect all sorts of things in your body including blood calcium levels, metabolism, etc - and monitor for recurrence. That's right thyroid cancer is known to recur up to 30-40 years later. So never mind that you get through the first five years when most cancers recur, its the first 40 years that you have to worry about recurrence. According to this new book:
"After your treatment, you will receive life-long monitoring. This is for two main reasons.
• First, long-term monitoring is important to make sure that your dose of thyroid hormone replacement is appropriate—neither too low nor too high for your specific needs.
• Second, you will receive testing to find out if there is persistent disease or possible recurrence. Many people with
differentiated thyroid cancer experience persistent disease or a recurrence, sometimes many years after the initial treatment. The prognosis for any person with a recurrence is better if it is discovered early. This is why life-long monitoring is important.
• The exact type of monitoring, and how often it takes place, depends on the size of the original tumor and whether the cancer had spread locally or distantly, as well as other factors.
• People free of disease receive less monitoring or testing than those with evidence of persistent disease.
• Also, testing is spread out and becomes less frequent when the patient becomes free of disease. You and your doctor should discuss a plan to fit your situation.
Monitoring will most likely include:
• Physical neck examination, including feeling the thyroid bed area. Typically, this is done every 3 to 6 months for the first 2 years, and at least once a year thereafter.
• Blood tests. Certain blood tests will determine if you are on the right dosage of thyroid hormone replacement. Your medication dose may change over time. Blood testing is also useful to monitor for cancer recurrence. The blood tests will depend on your type of thyroid cancer.
• Neck ultrasound. This test is increasingly used because it is a very sensitive way to find potential disease in the neck. It involves moving an instrument along your neck, without any pain, and there is no radiation exposure associated with it."
So it may be a good cancer in that you probably won't die from it right away, unless you have Anaplastic thyroid cancer which is only given a Stage IV diagnosis and prognosis, but you have to keep watch for the rest of your life. And cancer is cancer no matter how you call it. If you want to learn more, go here and down load your own copy of the new book.
However the result of treatment for thyroid cancer is a lifetime of monitoring to keep your thyroid levels right - your thyroid levels can affect all sorts of things in your body including blood calcium levels, metabolism, etc - and monitor for recurrence. That's right thyroid cancer is known to recur up to 30-40 years later. So never mind that you get through the first five years when most cancers recur, its the first 40 years that you have to worry about recurrence. According to this new book:
"After your treatment, you will receive life-long monitoring. This is for two main reasons.
• First, long-term monitoring is important to make sure that your dose of thyroid hormone replacement is appropriate—neither too low nor too high for your specific needs.
• Second, you will receive testing to find out if there is persistent disease or possible recurrence. Many people with
differentiated thyroid cancer experience persistent disease or a recurrence, sometimes many years after the initial treatment. The prognosis for any person with a recurrence is better if it is discovered early. This is why life-long monitoring is important.
• The exact type of monitoring, and how often it takes place, depends on the size of the original tumor and whether the cancer had spread locally or distantly, as well as other factors.
• People free of disease receive less monitoring or testing than those with evidence of persistent disease.
• Also, testing is spread out and becomes less frequent when the patient becomes free of disease. You and your doctor should discuss a plan to fit your situation.
Monitoring will most likely include:
• Physical neck examination, including feeling the thyroid bed area. Typically, this is done every 3 to 6 months for the first 2 years, and at least once a year thereafter.
• Blood tests. Certain blood tests will determine if you are on the right dosage of thyroid hormone replacement. Your medication dose may change over time. Blood testing is also useful to monitor for cancer recurrence. The blood tests will depend on your type of thyroid cancer.
• Neck ultrasound. This test is increasingly used because it is a very sensitive way to find potential disease in the neck. It involves moving an instrument along your neck, without any pain, and there is no radiation exposure associated with it."
So it may be a good cancer in that you probably won't die from it right away, unless you have Anaplastic thyroid cancer which is only given a Stage IV diagnosis and prognosis, but you have to keep watch for the rest of your life. And cancer is cancer no matter how you call it. If you want to learn more, go here and down load your own copy of the new book.
Monday, November 21, 2011
Screening does more harm than good?
I found an article saying that the UKs NHS policies of screening for breast cancer do more harm than good. Hello - screening is a good thing.
According to the article, the NHS invites women over 50 to have three-year screening mammograms (that is one every three years). Yes mammograms pick up things that may never turn into to tumors/problems at all causing stress and worry but the tumors they catch are more likely to be caught early. As opposed to the ones caught later in manual exams which are usually caught in later stage. And one third of all breast cancers are caught between the mammograms. But is the stress of a false positive more damaging than a late stage cancer diagnosis? I'll take the false positive risk any day. As opposed to the 'we found it too late risk'.
The article adds that women with breast cancer in their families should get the gene test because ten percent of all diagnosis are hereditary. That means 90% of all breast cancers have no hereditary connection - what are those people supposed to do? Get a mammogram every three years and cross their fingers in between?. A red rash can be a sign of inflammatory, an aggressive cancer - which is very rare, just a few percent each year of all cases diagnosed. Women should also be breast aware and do regular monthly self exams. Well, blah, blah, blah, this is nothing new.
Finally the article ends with: "Prof Evans tells menopausal women with a family history to avoid hormone-replacement therapy as artificially raising hormone levels can increase risk of breast cancer. The hormone oestrogen, which can drive some forms of breast cancer, is produced by fatty tissue. So the fatter you are, the bigger the risk."
Where do I have a problem this article? I am not sure I can count that high. I originally read this article and thought it might be a nice blog topic on the pros and cons of screening. Then I really started reading it and got ticked off. A mammogram every three years after age 50? And then they stop after age 70 unless requested by the patient? ‘By the age of 80 any lump is likely to be breast cancer. Women should be aware of any changes.’ - so at the highest risk age, screening is only at patient request? That is so (il)logical to me - it must be a government regulation. And did they just call me fat when discussing HRT and estrogen? They made me feel it was the fact I was not the perfect size 6 that is why I ended up with estrogen receptive breast cancer. I am not slamming the NHS but maybe they just need a new bedside manner in this whole article.
According to the article, the NHS invites women over 50 to have three-year screening mammograms (that is one every three years). Yes mammograms pick up things that may never turn into to tumors/problems at all causing stress and worry but the tumors they catch are more likely to be caught early. As opposed to the ones caught later in manual exams which are usually caught in later stage. And one third of all breast cancers are caught between the mammograms. But is the stress of a false positive more damaging than a late stage cancer diagnosis? I'll take the false positive risk any day. As opposed to the 'we found it too late risk'.
The article adds that women with breast cancer in their families should get the gene test because ten percent of all diagnosis are hereditary. That means 90% of all breast cancers have no hereditary connection - what are those people supposed to do? Get a mammogram every three years and cross their fingers in between?. A red rash can be a sign of inflammatory, an aggressive cancer - which is very rare, just a few percent each year of all cases diagnosed. Women should also be breast aware and do regular monthly self exams. Well, blah, blah, blah, this is nothing new.
Finally the article ends with: "Prof Evans tells menopausal women with a family history to avoid hormone-replacement therapy as artificially raising hormone levels can increase risk of breast cancer. The hormone oestrogen, which can drive some forms of breast cancer, is produced by fatty tissue. So the fatter you are, the bigger the risk."
Where do I have a problem this article? I am not sure I can count that high. I originally read this article and thought it might be a nice blog topic on the pros and cons of screening. Then I really started reading it and got ticked off. A mammogram every three years after age 50? And then they stop after age 70 unless requested by the patient? ‘By the age of 80 any lump is likely to be breast cancer. Women should be aware of any changes.’ - so at the highest risk age, screening is only at patient request? That is so (il)logical to me - it must be a government regulation. And did they just call me fat when discussing HRT and estrogen? They made me feel it was the fact I was not the perfect size 6 that is why I ended up with estrogen receptive breast cancer. I am not slamming the NHS but maybe they just need a new bedside manner in this whole article.
Wednesday, November 9, 2011
Screening tests - good or bad
Screening tests have come a long way in recent decades. Mammograms, as an example, were virtually unknown in the 1970's and started being suggested as a way to detect breast cancer by 1980. Then they became recommended annually. Then digital technology came along so they could detect even smaller and smaller cancers. And the rate of false positives went up - causing unwanted stress and unneeded biopsies.
Now we are at a point were tests are so good they are finding small benign 'nothings' or very early stage cancers that are so slow growing, they would never be an issue.
Using this chart, you can see the risks of getting or dying from some cancers:
We talk about the tests, screenings, and costs. But if you look at the numbers, what are the chances you are going to die from it anyway? So where do you draw the line on what you test for and what you ignore? Is it really worth it to have that every ten year colonoscopy if you have no other risk factors - like family members with the colon cancer? Your risk of being diagnosed in the next 20 years, at age 40 is less than 1%. As the article states, "The average woman has a 3 percent lifetime risk of dying of breast cancer, a low risk for a disease that women find so scary. But the chances of getting breast cancer do gradually increase with age and other circumstances."
I am not suggesting that we stop screening tests. I am diligent about getting them as suggested - with my medical history wouldn't you? But they are worthy of another look. The biggest killer in the US is heart disease. How do we test for that? We start with pulse and blood pressure readings which are quick and easy and can be repeated at minimal expense. But the costs of a mammogram, CT scan for lung cancer, or colonoscopy are more significant - both financially and emotionally when you add in the stress of colonoscopy prep, false positives, and unneeded biopsies.
I met a woman recently who had cancer. She said she would be out of touch for a few days as she was going to have a week of screening tests. We talked about them briefly. She said she wasn't really concerned about them but that they do induce either scanxiety or scanphobia in those who have to go through them. That little clench in your gut each time you drive to the hospital for yet another one - they really start to add up over time.
How can we take care of ourselves and catch 'bad things' as early as possible? Maybe we go back to eating right, exercise, maintain a healthy weight, blah, blah, blah (where have I heard this before?). I don't know. I just get to go to the doctor all the time.
Now we are at a point were tests are so good they are finding small benign 'nothings' or very early stage cancers that are so slow growing, they would never be an issue.
Using this chart, you can see the risks of getting or dying from some cancers:
We talk about the tests, screenings, and costs. But if you look at the numbers, what are the chances you are going to die from it anyway? So where do you draw the line on what you test for and what you ignore? Is it really worth it to have that every ten year colonoscopy if you have no other risk factors - like family members with the colon cancer? Your risk of being diagnosed in the next 20 years, at age 40 is less than 1%. As the article states, "The average woman has a 3 percent lifetime risk of dying of breast cancer, a low risk for a disease that women find so scary. But the chances of getting breast cancer do gradually increase with age and other circumstances."
I am not suggesting that we stop screening tests. I am diligent about getting them as suggested - with my medical history wouldn't you? But they are worthy of another look. The biggest killer in the US is heart disease. How do we test for that? We start with pulse and blood pressure readings which are quick and easy and can be repeated at minimal expense. But the costs of a mammogram, CT scan for lung cancer, or colonoscopy are more significant - both financially and emotionally when you add in the stress of colonoscopy prep, false positives, and unneeded biopsies.
I met a woman recently who had cancer. She said she would be out of touch for a few days as she was going to have a week of screening tests. We talked about them briefly. She said she wasn't really concerned about them but that they do induce either scanxiety or scanphobia in those who have to go through them. That little clench in your gut each time you drive to the hospital for yet another one - they really start to add up over time.
How can we take care of ourselves and catch 'bad things' as early as possible? Maybe we go back to eating right, exercise, maintain a healthy weight, blah, blah, blah (where have I heard this before?). I don't know. I just get to go to the doctor all the time.
Tuesday, November 8, 2011
More on 'owning' the genetic test
The other day I blogged about 'owning' the genetic breast cancer test. Now there is new outrage against Myriad Labs. They have developed another test, called the BART test, that can pick up further cancers and reduce risk additionally:
I completely agree with this argument. Myriad Labs is in the wrong here. But I do have a few comments:
- How the hell (pardon my language but its worthy here) did they get to 'own' the breast cancer gene? I have genes in my body - are we going to start selling them off to the highest bidder? This adds a really creepy touch to the Big Brother concept. This is the part that really gets me. I understand the basics of patent law but do not consider myself in anyway an expert. I just don't understand why they now own the gene. Maybe they own the test. But they certainly should not own a gene. Maybe this article has it slightly wrong. If they don't, we clearly need to have our laws catch up with genetic testing abilities.
- If you get the BRCA test, I think your insurance covers it. But now that this next test exists and it is a medical genetic test, shouldn't there be insurance coverage for it? Well, maybe not necessarily covered by insurance (insurance can't cover everything and this is actually for a small population but that's another discussion - perhaps tomorrow if I remember with my tiny chemobrain), but at a lower cost. $700 for a lab test that is done over and over again is a bit outrageous. From a business point of view, if your costs are that high that you can justify a $700 customer fee, you need to look at business efficiencies and cost reductions to be more competitive. Oh that's right, they own the gene so they don't need to compete.
- Why is the lab tech upselling the additional test? Are we going to start seeing sales people in the waiting rooms upselling additional tests? 'Excuse me, would you like to have a test to see if your grandchildren might have green eyes? It only takes 5 minutes.' Yeah, right.
- Genetic testing is optional and not required. Some people want it and some people don't - they simply don't want to know if they are more likely to get a specific ailment. Its a personal choice. I think the current recommendations are that women with breast cancer in their family get a BRCA test. Some women do, and some don't.
- The other thing about genetic testing is that just because there is cancer or whatever in your family doesn't mean you are going to get it. (Who was that scientist with the pea plants who looked at inherited traits that was part of a biology class decades ago?) You know what I mean. Two brown eyed parents can have blue eyed children even though it is a recessive trait. You can have a history of an ailment in your family but that doesn't mean you will get it. And a genetic abnormality can suddenly appear - you can be the mutant.
Genetics are going to tell us a lot in the future but our laws need to catch up so no one owns a gene or becomes a single source for a test at the risk of patient lives. And individuals still need to be the one to decide if they want a test or not. A technician should not become the sales person for the test. And no one should own my genes.
I completely agree with this argument. Myriad Labs is in the wrong here. But I do have a few comments:
- How the hell (pardon my language but its worthy here) did they get to 'own' the breast cancer gene? I have genes in my body - are we going to start selling them off to the highest bidder? This adds a really creepy touch to the Big Brother concept. This is the part that really gets me. I understand the basics of patent law but do not consider myself in anyway an expert. I just don't understand why they now own the gene. Maybe they own the test. But they certainly should not own a gene. Maybe this article has it slightly wrong. If they don't, we clearly need to have our laws catch up with genetic testing abilities.
- If you get the BRCA test, I think your insurance covers it. But now that this next test exists and it is a medical genetic test, shouldn't there be insurance coverage for it? Well, maybe not necessarily covered by insurance (insurance can't cover everything and this is actually for a small population but that's another discussion - perhaps tomorrow if I remember with my tiny chemobrain), but at a lower cost. $700 for a lab test that is done over and over again is a bit outrageous. From a business point of view, if your costs are that high that you can justify a $700 customer fee, you need to look at business efficiencies and cost reductions to be more competitive. Oh that's right, they own the gene so they don't need to compete.
- Why is the lab tech upselling the additional test? Are we going to start seeing sales people in the waiting rooms upselling additional tests? 'Excuse me, would you like to have a test to see if your grandchildren might have green eyes? It only takes 5 minutes.' Yeah, right.
- Genetic testing is optional and not required. Some people want it and some people don't - they simply don't want to know if they are more likely to get a specific ailment. Its a personal choice. I think the current recommendations are that women with breast cancer in their family get a BRCA test. Some women do, and some don't.
- The other thing about genetic testing is that just because there is cancer or whatever in your family doesn't mean you are going to get it. (Who was that scientist with the pea plants who looked at inherited traits that was part of a biology class decades ago?) You know what I mean. Two brown eyed parents can have blue eyed children even though it is a recessive trait. You can have a history of an ailment in your family but that doesn't mean you will get it. And a genetic abnormality can suddenly appear - you can be the mutant.
Genetics are going to tell us a lot in the future but our laws need to catch up so no one owns a gene or becomes a single source for a test at the risk of patient lives. And individuals still need to be the one to decide if they want a test or not. A technician should not become the sales person for the test. And no one should own my genes.
Tuesday, November 1, 2011
Who owns the genetic tests
As genetic testing gains ground as a way of learning if one is at greater risk of a hereditary ailment, shouldn't the testing be available at multiple labs? This would allow for competitive pricing and more importantly - a second test to confirm or refute the original one's result.
Using the BRCA - breast cancer gene - test (BRCA - say it as bracket but with an 'a' instead of an 'et' on the end so you don't have to feel stupid saying the letters B-R-C-A) to determine a woman's risk of hereditary breast cancer as an example, currently there is only one lab who does all the testing in the US. They hold a patent on it and are ordering other labs to cease and desist in offering the same test. They made $350 million last year and charge $3000 per test which may or may not be covered by decision. As a result of the test, you get a score telling you how likely or unlikely you are to develop the hereditary breast cancer. One end of the scale is very high risk and the other end is very low risk - leaving a middle full of 'maybes.'
If you get a maybe, you have no way of getting a second test. You have to rely on the one lab to have been accurate when making a life changing or life saving decision. I am sure they do their tests following all proper protocol but there is always a margin of error - a bad sample, lab tech having a bad day, etc - there is always a degree of subjectivity that can influence what should be a basic test.
As this article explains:
"The BRCA1 gene was discovered by a Berkeley research team led by geneticist Mary-Claire King in 1990. Over the next few years, scientists raced to sequence it. Myriad’s got there first. But did the company’s work in isolating and cloning the gene transform it from a “product of nature” (which can’t be patented) into an “isolated composition of matter” (which can)? The ACLU – together with about 150,000 patients, scientists, and medical ethicists – contends that the answer to this question is no.
In 2009, the ACLU filed suit against Myriad and the US Patent and Trademark Office, arguing that the company’s BRCA patents are invalid and unconstitutional. In 2010, a New York federal court decided in favor of the ACLU, but this July, that decision was overturned by the US Court of Appeals. “Cleaving” the gene from the body, that court found, renders it eligible for patent protection. The ACLU now intends to bring the case to the Supreme Court."
In the meantime people are making life changing or life saving decisions based on this one lab. And the real question it comes down to is are their patents hindering research that could help save lives of others? Researchers should work together but the patents that Myriad seems to be hiding behind are impeding the collaboration that could greatly speed up break throughs.
Genetics are not something that are made, they are not created, they are part of nature. So why can they be patented? When do patents become things that stop research instead of helping it? Why can't Myriad's researchers collaborate with others? Let me take a wild guess - someone is only interested in the money.
Using the BRCA - breast cancer gene - test (BRCA - say it as bracket but with an 'a' instead of an 'et' on the end so you don't have to feel stupid saying the letters B-R-C-A) to determine a woman's risk of hereditary breast cancer as an example, currently there is only one lab who does all the testing in the US. They hold a patent on it and are ordering other labs to cease and desist in offering the same test. They made $350 million last year and charge $3000 per test which may or may not be covered by decision. As a result of the test, you get a score telling you how likely or unlikely you are to develop the hereditary breast cancer. One end of the scale is very high risk and the other end is very low risk - leaving a middle full of 'maybes.'
If you get a maybe, you have no way of getting a second test. You have to rely on the one lab to have been accurate when making a life changing or life saving decision. I am sure they do their tests following all proper protocol but there is always a margin of error - a bad sample, lab tech having a bad day, etc - there is always a degree of subjectivity that can influence what should be a basic test.
As this article explains:
"The BRCA1 gene was discovered by a Berkeley research team led by geneticist Mary-Claire King in 1990. Over the next few years, scientists raced to sequence it. Myriad’s got there first. But did the company’s work in isolating and cloning the gene transform it from a “product of nature” (which can’t be patented) into an “isolated composition of matter” (which can)? The ACLU – together with about 150,000 patients, scientists, and medical ethicists – contends that the answer to this question is no.
In 2009, the ACLU filed suit against Myriad and the US Patent and Trademark Office, arguing that the company’s BRCA patents are invalid and unconstitutional. In 2010, a New York federal court decided in favor of the ACLU, but this July, that decision was overturned by the US Court of Appeals. “Cleaving” the gene from the body, that court found, renders it eligible for patent protection. The ACLU now intends to bring the case to the Supreme Court."
In the meantime people are making life changing or life saving decisions based on this one lab. And the real question it comes down to is are their patents hindering research that could help save lives of others? Researchers should work together but the patents that Myriad seems to be hiding behind are impeding the collaboration that could greatly speed up break throughs.
Genetics are not something that are made, they are not created, they are part of nature. So why can they be patented? When do patents become things that stop research instead of helping it? Why can't Myriad's researchers collaborate with others? Let me take a wild guess - someone is only interested in the money.
Friday, October 21, 2011
Mammogram controversy - more on the if we can't kill them, let's confuse them theory
So when should women start having mammograms. One theory is that annual mammograms lead to more false alarms and unnecessary biopsies. Then the opposing side says mammograms in younger women are essential as younger women are more likely to have their cancers found in early stage through mammograms than by self exam.
Hmmm.... so what is a smart woman to do? On one hand if you have mammograms you might have scares and unnecessary stress. On the other hand, your cancer is much more likely to be caught early thus allowing you to live a longer life. Me? I would opt for the longer life idea. I have had annual mammogram since I had a fibroidadenoma (fancy word for benign tumor) at the age of 23 and my breast cancer was found in a mammogram at 45. I think I also would have been having mammograms anyway because of that other cancer.
So if you are confused you are not alone. I think it is a giant conspiracy anyway. So if you have a nasty medical diagnosis, your doctors give all kinds of advice and expect you to make a rational decision while in the fog of 'OMG-I-have-cancer-and-gonna-die'. Confused patients are much more malleable and cooperative.... 'Um, I'm not sure. Doctor what should I do?" And then they make the decision for you.
Hmmm.... so what is a smart woman to do? On one hand if you have mammograms you might have scares and unnecessary stress. On the other hand, your cancer is much more likely to be caught early thus allowing you to live a longer life. Me? I would opt for the longer life idea. I have had annual mammogram since I had a fibroidadenoma (fancy word for benign tumor) at the age of 23 and my breast cancer was found in a mammogram at 45. I think I also would have been having mammograms anyway because of that other cancer.
So if you are confused you are not alone. I think it is a giant conspiracy anyway. So if you have a nasty medical diagnosis, your doctors give all kinds of advice and expect you to make a rational decision while in the fog of 'OMG-I-have-cancer-and-gonna-die'. Confused patients are much more malleable and cooperative.... 'Um, I'm not sure. Doctor what should I do?" And then they make the decision for you.
Monday, June 20, 2011
Screening tests - good or bad?
There is a little furor (debate, discussion, disagreement, shouting match, hoo-haa, to-do, etc) going on regarding screening tests. First of all are the disputes about which tests should be done and when - mammograms at 40 or 50, prostate checks - are they worth it, and more. All sorts of meetings are going on around the country and doctors and specialists and other 'important' people are arguing about it and some even are quitting their jobs over them.
Well, they can argue all they want because I don't want to get into a discussion about whether they are important or not because that's not my business. And 'with your medical history, they need to be sure', so I get them all anyway. (Well not the prostate checks, but the rest of them.)
I think its great that they will be free to encourage people to get them annually. I think a lot of people look at it as a cost savings or just as incentive not to deal with a test or a big needle (or a camera somewhere it doesn't belong). I mean if someone says go have this test and it will cost you $100, people can quite easily say 'no, I don't need it'. But if they are told, go have this test and its free, they are more likely to agree.
So now people are speaking up, if you have this free screening, if they find something - WARNING - it will cost you money. Ahem, isn't that the point of screening tests? To catch them before you end up having something nasty and really expensive?
I agree if you have a colonoscopy and they find something that needs to be removed and tested, you have left the 'free test' zone and have moved into the land of 'medical bills'. The free part is the test. The not free part is the 'we found something before it was bad'. But perhaps, they should be a bit more explicit in saying 'if we find something, it will cost you' (and not just in your wallet). It really means, welcome to the medical roller coaster and if you are lucky you can get off it after the results of the biopsy.
The point is the screening test is free but not the testing that might result after. Get over it. That means they caught something before it killed you. To put it bluntly, would you rather be out a few hundred dollars or dead?
As a poster child for the results of screening tests and heeding medical advice, I can tell you they are worth it. I may not be rich but I'm still here.
Well, they can argue all they want because I don't want to get into a discussion about whether they are important or not because that's not my business. And 'with your medical history, they need to be sure', so I get them all anyway. (Well not the prostate checks, but the rest of them.)
I think its great that they will be free to encourage people to get them annually. I think a lot of people look at it as a cost savings or just as incentive not to deal with a test or a big needle (or a camera somewhere it doesn't belong). I mean if someone says go have this test and it will cost you $100, people can quite easily say 'no, I don't need it'. But if they are told, go have this test and its free, they are more likely to agree.
So now people are speaking up, if you have this free screening, if they find something - WARNING - it will cost you money. Ahem, isn't that the point of screening tests? To catch them before you end up having something nasty and really expensive?
I agree if you have a colonoscopy and they find something that needs to be removed and tested, you have left the 'free test' zone and have moved into the land of 'medical bills'. The free part is the test. The not free part is the 'we found something before it was bad'. But perhaps, they should be a bit more explicit in saying 'if we find something, it will cost you' (and not just in your wallet). It really means, welcome to the medical roller coaster and if you are lucky you can get off it after the results of the biopsy.
The point is the screening test is free but not the testing that might result after. Get over it. That means they caught something before it killed you. To put it bluntly, would you rather be out a few hundred dollars or dead?
As a poster child for the results of screening tests and heeding medical advice, I can tell you they are worth it. I may not be rich but I'm still here.
Thursday, February 24, 2011
Rock, paper, scissors
Rock is for the granite curb I hit yesterday and removed the hubcap on the car (but the tire does not seem flat) and sooner or later the hubcap will be reattached to the car.
Paper is for the paper the insurance company insists on drowning us in. I know lots is done electronically now. My doctor never gives me written prescriptions any more. They are sent electronically to the pharmacy which goes on line is linked to the insurance company regarding coverage and payment. Now they have invented this evil system of preapprovals. THAT MUST BE DONE ON PAPER.
On Feb 4, I saw my doctor and asked for a refill on one of my prescriptions. I called the pharmacy last week to see if they had it and could fill it so I could pick it. Apparently on Feb 4 when the doctor sent it over, it was too early to be filled so it was put on hold. But now when I need it, it requires preapproval from the insurance company. So the pharmacy called the doctor who must get a form from the insurance company and fill it out and mail or fax it in. After approval the insurance company will mail or fax it back to the doctor who must get it to the pharmacy. This a PAPER system by companies who communicate electronically all the time. The insurance company requires it be done on PAPER. And it takes 7-10 days. And no it couldn't have been started when the insurance couldn't fill the prescription on the 4th because it was too early. That would have been logical.
There is a giant technological gap here - job opportunity here? - that could be filled by a few lines of code here and there and simplify everything.
The scissors is actually the technology behind this new app for your smart phone - diagnose cancer with 96% accurancy... but don't get too happy here - it needs more tests.
Paper is for the paper the insurance company insists on drowning us in. I know lots is done electronically now. My doctor never gives me written prescriptions any more. They are sent electronically to the pharmacy which goes on line is linked to the insurance company regarding coverage and payment. Now they have invented this evil system of preapprovals. THAT MUST BE DONE ON PAPER.
On Feb 4, I saw my doctor and asked for a refill on one of my prescriptions. I called the pharmacy last week to see if they had it and could fill it so I could pick it. Apparently on Feb 4 when the doctor sent it over, it was too early to be filled so it was put on hold. But now when I need it, it requires preapproval from the insurance company. So the pharmacy called the doctor who must get a form from the insurance company and fill it out and mail or fax it in. After approval the insurance company will mail or fax it back to the doctor who must get it to the pharmacy. This a PAPER system by companies who communicate electronically all the time. The insurance company requires it be done on PAPER. And it takes 7-10 days. And no it couldn't have been started when the insurance couldn't fill the prescription on the 4th because it was too early. That would have been logical.
There is a giant technological gap here - job opportunity here? - that could be filled by a few lines of code here and there and simplify everything.
The scissors is actually the technology behind this new app for your smart phone - diagnose cancer with 96% accurancy... but don't get too happy here - it needs more tests.
Tuesday, November 16, 2010
Who is high risk?
Women who are at high risk of breast cancer now should get MRI's in addition to mammograms. They define women who are high risk as those with the BRCA gene mutation. What about those of us who have had breast cancer already? Aren't we at high risk? Should we be getting MRI's too?
Actually I think its up to our doctors who should get which test. But let's focus on the words 'high risk'. Yes those with the BRCA gene mutation are considered at higher risk of getting breast and ovarian cancer. But what about use who had it once? We can get it again. Don't forget about us too.
Actually I think its up to our doctors who should get which test. But let's focus on the words 'high risk'. Yes those with the BRCA gene mutation are considered at higher risk of getting breast and ovarian cancer. But what about use who had it once? We can get it again. Don't forget about us too.
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