With new medical research, medical 'tests' are springing up all over to test for genetic defects in unborn babies, best treatments for medical conditions, and risks of certain diseases, among other issues. The problem is not all these tests are accurate and are leading to unnecessary surgeries, putting patients on unneeded medications, and raising medical costs.
The problem is when tests are run at a single facility so the FDA is relying on manufacturer reported problems including deaths or injuries to patients.
"Diagnostic tests are now regulated differently depending on where they were developed and manufactured. Products that will be sold to multiple labs — “commercial test kits” — are typically subject to FDA review before they go on the market.
Manufacturers are supposed to inform the government if they learn that their products may have contributed to a death or a serious injury, and they may have to notify the government if they recall defective products.
But for tests manufactured and used within a single laboratory, the agency has not actively enforced regulatory requirements, even though doctors around the country may submit samples to that lab for testing."
The tests included here are the OncotypeDX for breast cancer recurrence risk and the CA-125 test for ovarian cancer. Using the CA-125 test as an example:
One blood test to help detect ovarian cancer was never shown to be effective, the report said, but was used anyway. False-positive tests may have led to “unnecessary surgery to remove healthy ovaries.”
According to the American Cancer Society:
"In studies of women at average risk of ovarian cancer, using TVUS and CA-125 for screening led to more testing and sometimes more surgeries, but did not lower the number of deaths caused by ovarian cancer. For that reason, no major medical or professional organization recommends the routine use of TVUS or the CA-125 blood test to screen for ovarian cancer."
There are also studies out looking at the validity of these two tests and others. The current administration as well as much of Congress is looking at ways to close loopholes and require additional testing and validation of the tests to ensure patients are not harmed or subject to unneeded treatments.
My doctors have never mentioned either of these two tests for me. I do not think they are used at the hospital where I am treated either. Sometimes I have wondered why these tests were not offered. But now I am happy I didn't make any decisions based on their results.
Nov 27, 2017
Nov 20, 2017
Can I be a person not a patient?
I often feel I spend a good portion of my life going from medical appointment to medical appointment. My calendar is full of doctor appointments, reminders to call different doctors, or notes on prescriptions.
My schedule is set for the rest of my life by medical appointments. Yesterday I wanted to go to the gym in the morning but had to wait until after the eye doctor for my dry eyes, which force me there twice a year. Those dry eyes, along with dry mouth, are a 'benefit' of my rheumatoid. Which is followed by a dentist appointment on Friday morning, which will also delay my getting to the gym. Or force me to get up early to go to the gym first.
I used to work with a woman who scheduled all her doctor appointments for the year in one week. I'm so jealous.
Normal people don't go to the doctor as often as I do. Their calendars are filled with friends, fun, and adventures. I get to go to the doctor.
My schedule is set for the rest of my life by medical appointments. Yesterday I wanted to go to the gym in the morning but had to wait until after the eye doctor for my dry eyes, which force me there twice a year. Those dry eyes, along with dry mouth, are a 'benefit' of my rheumatoid. Which is followed by a dentist appointment on Friday morning, which will also delay my getting to the gym. Or force me to get up early to go to the gym first.
I used to work with a woman who scheduled all her doctor appointments for the year in one week. I'm so jealous.
Normal people don't go to the doctor as often as I do. Their calendars are filled with friends, fun, and adventures. I get to go to the doctor.
Nov 13, 2017
Comparing notes
Yesterday I had lunch with a high school friend who has MS. She is the one person I know who can relate to many of my health issues. While she hasn't had cancer, she has had chemotherapy - it is used for MS as well as other ailments besides cancer. Its safe to say we can compare a lot of notes.
As we graduated from junior high and high school together, we both are 37 and holding. And our respective healths (I am not sure healths is a word but I'm using it) are in the toilet. We discussed exercise options - she is an avid hand cycler - and I go to the gym.
We also talked pain management and siblings. Pain management is big for both of us. Pain management while functioning like a normal human being is even more important. There is a fine line between the two. And siblings? Need I say more. We got to argue about who got the better handicapped parking space. I got there first and left her a closer van accessible space... that someone else took before she arrived.
I have many cancer friends these days but I don't know as many people with other chronic conditions. And my friends with rheumatoid don't seem to have anywhere as many symptoms as I do.
As we graduated from junior high and high school together, we both are 37 and holding. And our respective healths (I am not sure healths is a word but I'm using it) are in the toilet. We discussed exercise options - she is an avid hand cycler - and I go to the gym.
We also talked pain management and siblings. Pain management is big for both of us. Pain management while functioning like a normal human being is even more important. There is a fine line between the two. And siblings? Need I say more. We got to argue about who got the better handicapped parking space. I got there first and left her a closer van accessible space... that someone else took before she arrived.
I have many cancer friends these days but I don't know as many people with other chronic conditions. And my friends with rheumatoid don't seem to have anywhere as many symptoms as I do.
Nov 7, 2017
He's walking the walk, not just talking the talk
Here's an example of someone who is really walking the walk. A former NHL (Non Hodgkin Lymphoma) patient, Robert Bazemore, is now the CEO of Epizyme which is developing a drug targetting NHL (which is not just a hockey league for some with cancer).
This is huge to me. I greatly hope that this means the company will focus on the patients and not just on the bottom line. The article mentions that he did not mention his medical history when interviewing for the board but did reveal it after learning about the focus of the company.
As a cancer person it is very difficult not to let a disease define you and what you do. Often we keep it hidden from co-workers because we do not want to be labeled or thought of as being sick. This can be a huge detriment to one's career path. If others think we aren't physically up to a job or we might n need too much time off and would be a burden to the company and therefore would not get a job offer.
But now that we have a CEO, openly a cancer person, running a company which is developing a drug that might help him and others with his same cancer. I am a huge fan.
I wish more people could do this and society would not shame people for medical issues.
This is huge to me. I greatly hope that this means the company will focus on the patients and not just on the bottom line. The article mentions that he did not mention his medical history when interviewing for the board but did reveal it after learning about the focus of the company.
As a cancer person it is very difficult not to let a disease define you and what you do. Often we keep it hidden from co-workers because we do not want to be labeled or thought of as being sick. This can be a huge detriment to one's career path. If others think we aren't physically up to a job or we might n need too much time off and would be a burden to the company and therefore would not get a job offer.
But now that we have a CEO, openly a cancer person, running a company which is developing a drug that might help him and others with his same cancer. I am a huge fan.
I wish more people could do this and society would not shame people for medical issues.
Nov 6, 2017
Perceptions of cancer
After living with cancer for so long, I think I have a slightly different perception of cancer than many others.
On Saturday I had a table with a craft show. I started chatting with the couple at the next table. The husband said something along the lines of 'if you have your health, you have everything'. To which I replied, well I don't have my health. He said he didn't either because he had had cancer three times. I asked him what kinds (because if you are a cancer person, you can ask other cancer people these questions). He said he had had prostate cancer and then basal skin cancer in two places.
My first thought was basal cell skin cancer? Is that very bad? Is it life threatening? Could it become life threatening? I don't know how bad it really is. I do not mean to dis his medical history but basal cell cancer doesn't strike me as being that bad. I think he was just more scared of the word 'cancer' than me at this point.
When I was first diagnosed with breast cancer, a group of us used to joke about what the worst thing a doctor could say to us. That we had cancer. But since we had all previously heard this, there was nothing worse they could tell us.
I have since learned that being told you have chronic, incurable, progressive diseases, cancer still is the worst thing you can be told but other things can come a close second. And I am not sure how I would react to another cancer diagnosis.
I am watching GMA as they talk about how former president Carter just announced that his melanoma which had spread to his liver in brain this summer, is no longer detectable after treatment. How does that sound? Cancer which had previously metastasized is no longer detectable? So is this a cure? Or has it become a chronic disease and not a terminal one?
So why does the word cancer continue to be so scary to some people? I used to work with a woman who would say that once she heard the word cancer, she would write people off and consider them done for as cancer was such a killer. I felt I should speak up to her and ask if she would write me off since I had cancer twice.
It is time our perceptions of cancer changed. Yes it is a killer still and will still continue to kill until a full cure is discovered. But now many people live for years and decades after a diagnosis. Before there were treatments such as chemotherapy and radiation, it was a death sentence. But now there is hope.
And we need to remember that.
On Saturday I had a table with a craft show. I started chatting with the couple at the next table. The husband said something along the lines of 'if you have your health, you have everything'. To which I replied, well I don't have my health. He said he didn't either because he had had cancer three times. I asked him what kinds (because if you are a cancer person, you can ask other cancer people these questions). He said he had had prostate cancer and then basal skin cancer in two places.
My first thought was basal cell skin cancer? Is that very bad? Is it life threatening? Could it become life threatening? I don't know how bad it really is. I do not mean to dis his medical history but basal cell cancer doesn't strike me as being that bad. I think he was just more scared of the word 'cancer' than me at this point.
When I was first diagnosed with breast cancer, a group of us used to joke about what the worst thing a doctor could say to us. That we had cancer. But since we had all previously heard this, there was nothing worse they could tell us.
I have since learned that being told you have chronic, incurable, progressive diseases, cancer still is the worst thing you can be told but other things can come a close second. And I am not sure how I would react to another cancer diagnosis.
I am watching GMA as they talk about how former president Carter just announced that his melanoma which had spread to his liver in brain this summer, is no longer detectable after treatment. How does that sound? Cancer which had previously metastasized is no longer detectable? So is this a cure? Or has it become a chronic disease and not a terminal one?
So why does the word cancer continue to be so scary to some people? I used to work with a woman who would say that once she heard the word cancer, she would write people off and consider them done for as cancer was such a killer. I felt I should speak up to her and ask if she would write me off since I had cancer twice.
It is time our perceptions of cancer changed. Yes it is a killer still and will still continue to kill until a full cure is discovered. But now many people live for years and decades after a diagnosis. Before there were treatments such as chemotherapy and radiation, it was a death sentence. But now there is hope.
And we need to remember that.