I hate these stories about the tragedy befalling someone because of missed medical tests. They are 'tragic' and the media picks them up and tells us about the tragedy and this poor person is going to die.
This is one about a woman in England who had breast cancer and now has brain tumors and was told that she has weeks to live. The media tries to blame this one on the health care system. I'm sorry and its a tragic story but still the patient should have done more on her part as well.
If you go to the doctor and they tell you its whatever - arthritis - and gives you medication. You take the medication and it doesn't work, you need to go back to the doctor and say this isn't working and demand more care. If its still a problem keep going back to the doctor until you are feeling better. If you still are refused care, find another doctor. You can't sit there and let them tell you its nothing if its something that gets worse.
I'm such a patient patient, I would be hanging out in my doctor's waiting room and getting more opinions to find out what is wrong.
Being a patient is a two way street. If you go to the doctor, you need to listen to their instructions and avoid them at your peril. If you follow their instructions, you should expect to feel better in the long run. On the other hand if you go to the doctor and follow their instructions and don't get better or achieve the expected results, speak up and demand more. Don't sit back in pain or discomfort and let them tell you its nothing.
The big pink wall
Whoop-de-doo, Ford Motors just announced its Warriors in Pink 2013 program. Now you must get excited. You can buy pink appaarel from their program and a portion of the sale of each garment, $5-$20, goes to one of four charities and you get to choose which. Komen, Young Survivors Coalition. Dr Susan Love Research Foundation or the Pink Fund. Isn't this just so great. You get to buy pink gear, I must need some more! I'll check my closet and get on line now.
This is just like Pinktober again isn't it? While I admire the Ford Motor company for thinking right, they could have done it without the pink.
A recent study points out that metastatic breast cancer patients often feel disenfranchised with the pretty pink ribbon ideology. The pink mentality is positive and shows all these happy women, dressed from head to toe in pink, saying pink, pink, pink. They form little clans for each woman with breast cancer and applaud each year out from treatment or each anniversary of their passing.
I think when breast cancer is happy - they are in treatment, they are so brave when they shaved their head, their surgery went well - its all pink and pretty.
But when the diagnosis and prognosis are not so good, the big pink wall goes up to protect the pink dressed supporters from the bad news. Its not as pretty picture any more. The pink people don't want to hang out with someone who isn't rah rah breast cancer any more. They want to move on to someone who is happy and smiling.
The study did also say that 45% of the metastatic patients developed their own circle to share information to help others. But still the metastatic patient loses the original support they had when they need it most. Support does not have to be pink but just needs to be.
This is just like Pinktober again isn't it? While I admire the Ford Motor company for thinking right, they could have done it without the pink.
A recent study points out that metastatic breast cancer patients often feel disenfranchised with the pretty pink ribbon ideology. The pink mentality is positive and shows all these happy women, dressed from head to toe in pink, saying pink, pink, pink. They form little clans for each woman with breast cancer and applaud each year out from treatment or each anniversary of their passing.
I think when breast cancer is happy - they are in treatment, they are so brave when they shaved their head, their surgery went well - its all pink and pretty.
But when the diagnosis and prognosis are not so good, the big pink wall goes up to protect the pink dressed supporters from the bad news. Its not as pretty picture any more. The pink people don't want to hang out with someone who isn't rah rah breast cancer any more. They want to move on to someone who is happy and smiling.
The study did also say that 45% of the metastatic patients developed their own circle to share information to help others. But still the metastatic patient loses the original support they had when they need it most. Support does not have to be pink but just needs to be.
More on the breast cancer treatment gap
A few weeks ago I blogged about the breast cancer treatment gap where women who are told they are BRCA positive only have surgical options to lower their risk of breast or ovarian cancer. It turns out this is growing in significance because of genetic testing progress.
This started when Angelina Jolie announced she had a prophylactic bilateral mastectomy because she was BRCA positive. Unless you have been living under a rock you couldn't have missed that story in the news recently.
While many people are supportive of her decision, some are not. Here is an article on the other side of the issue - which shows how some people are not in favor of this type of prophylactic surgery. I think this kind of decision is very personal but unfortunately there are not a lot of options for those with who test for the genetic mutation.
We can also add in the fact that insurers often are reluctant to pay for the tests. Not just the BRCA test but others for Cowden's syndrome or Li-Fraumeni syndrome, both of which are shown to raise risk for breast and other cancers.
Finally, let's top this all off with the fact that University of Alberta researchers have pinpointed markers for sporadic cases of breast cancer - meaning ones without a family history. Or about 80% of all breast cancers could be caused by these markers. They suggest that women with the marker could then proceed with prophylatic options. We know what that means.
So let's add it up:
So where does that leave the patients? Over the barrel without a lot of options.
This started when Angelina Jolie announced she had a prophylactic bilateral mastectomy because she was BRCA positive. Unless you have been living under a rock you couldn't have missed that story in the news recently.
While many people are supportive of her decision, some are not. Here is an article on the other side of the issue - which shows how some people are not in favor of this type of prophylactic surgery. I think this kind of decision is very personal but unfortunately there are not a lot of options for those with who test for the genetic mutation.
We can also add in the fact that insurers often are reluctant to pay for the tests. Not just the BRCA test but others for Cowden's syndrome or Li-Fraumeni syndrome, both of which are shown to raise risk for breast and other cancers.
Finally, let's top this all off with the fact that University of Alberta researchers have pinpointed markers for sporadic cases of breast cancer - meaning ones without a family history. Or about 80% of all breast cancers could be caused by these markers. They suggest that women with the marker could then proceed with prophylatic options. We know what that means.
So let's add it up:
- Researchers are finding genetic causes to more cancers.
- Insurers don't want to pay for genetic tests.
- The only options for women with the genetic mutations or markers are significant disfiguring surgery with long term complications.
So where does that leave the patients? Over the barrel without a lot of options.
A long weekend
We were supposed to go camping this weekend but didn't due to the weather so we had an unexpected few days at home. If anyone cares to think we are wimps I would like to state that it was snowing about five miles from the campground we were going to on Saturday.
We didn't go outside much because it has been cold, rainy, and raw but did make it into Boston to go the museum on Saturday. Sunday we cleaned out the basement some more - there is always more on that project. Yesterday we finally were able to grill outside. And my husband mowed the lawn.
One thing I have enjoyed is that I finally got caught up on my rest. Not just sleep but rest. During the week when I have to get up three days in a row (which you may think is an easy week), I am struggling by the third day and really need more rest.
I could have gone off for the whole day yesterday and done fun things but am concerned that I will not make it through the next three days of work if I did. I needed another easy day at home. My plan was early dinner on the grill outside and then early to bed. That part worked. Then I woke up at 10, 1130, 2, 330 and 430 so I don't feel very rested. Today I will work and go to the gym after a bone density test and then I will go to bed early. I need the rest.
The cat is very miffed that his breakfast has been late for four days in a row. I'm not.
We didn't go outside much because it has been cold, rainy, and raw but did make it into Boston to go the museum on Saturday. Sunday we cleaned out the basement some more - there is always more on that project. Yesterday we finally were able to grill outside. And my husband mowed the lawn.
One thing I have enjoyed is that I finally got caught up on my rest. Not just sleep but rest. During the week when I have to get up three days in a row (which you may think is an easy week), I am struggling by the third day and really need more rest.
I could have gone off for the whole day yesterday and done fun things but am concerned that I will not make it through the next three days of work if I did. I needed another easy day at home. My plan was early dinner on the grill outside and then early to bed. That part worked. Then I woke up at 10, 1130, 2, 330 and 430 so I don't feel very rested. Today I will work and go to the gym after a bone density test and then I will go to bed early. I need the rest.
The cat is very miffed that his breakfast has been late for four days in a row. I'm not.
I am not blog worthy today
But in case anyone thought I might have dropped off the face of the earth or something, I thought I would say hi.
Komen disparities again
Of course, Nancy Brinker, founder and president of the Komen Foundation for the Cure (because they trade marked 'for the cure') had to grab onto the Angelina Jolie announcement. She latched onto the disparities of availability of the BRCA test and affordability of breast cancer treatment for lower income women.
Why doesn't this surprise me?
Anyway I digress. She was very proud to announce that Komen has donated a whopping $34 million dollars for BRCA research since their start, out of the total $755 million research investment.
$34 million is peanuts for them.
In their fiscal 2012, Komen raised $342 million. In one year. So if you do a little math, their total BRCA research investment is 1/10th of their total annual revenues. It only took them 30 years to reach that number (they started in 1982). What they have donated to research over 30 years, would take them just over 2 years to reach at their current revenues.
So Komen doesn't really fund research. They fund community programs and also spend a lot of money on pinkification. I guess if you don't think they fund research this is okay. I think we all thought they funded research.
Why do I blog about Komen? Because they just irritate me so much. They are a really good example of a poorly run organization which has problems with putting their foot in their mouth regularly and they might have just done it again.
All Ms. Brinker's post did for me was highlight more discrepancies in what they do vs what we all thought they did.
If you want to help fund cancer research do not donate to Komen, send your money elsewhere.
Why doesn't this surprise me?
Anyway I digress. She was very proud to announce that Komen has donated a whopping $34 million dollars for BRCA research since their start, out of the total $755 million research investment.
$34 million is peanuts for them.
In their fiscal 2012, Komen raised $342 million. In one year. So if you do a little math, their total BRCA research investment is 1/10th of their total annual revenues. It only took them 30 years to reach that number (they started in 1982). What they have donated to research over 30 years, would take them just over 2 years to reach at their current revenues.
So Komen doesn't really fund research. They fund community programs and also spend a lot of money on pinkification. I guess if you don't think they fund research this is okay. I think we all thought they funded research.
Why do I blog about Komen? Because they just irritate me so much. They are a really good example of a poorly run organization which has problems with putting their foot in their mouth regularly and they might have just done it again.
All Ms. Brinker's post did for me was highlight more discrepancies in what they do vs what we all thought they did.
If you want to help fund cancer research do not donate to Komen, send your money elsewhere.
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.
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