As we approach the month of Pinktober (with 30 days advance notice), it is time for all of us to raise our hands and pledge the following. Please join in.
Raise your right hand and repeat after me:
I (state your name [and not the Animal House version]) promise that during the month of Pinktober, formerly known as October, I will not arbitrarily purchase pink items or donate to pink causes with out first researching how much actually goes to breast cancer research or screening services.
I will first research them using services such as Charity Navigator (www.charitynavigator.org) to ensure they are legitimate.
I also promise that I will not support pinkification efforts to paint things pink, light up buildings in pink, or other such activities.
Thank you.
We need to focus our efforts on research and screening services for under served populations. We do not need any more awareness. The American public is plenty aware of breast cancer at this point.
Between now and then September is Prostate Cancer, Childhood Cancer, Thyroid Cancer, Leukemia and Lymphoma, and Ovarian Cancer month. It also contains the Jewish holy days of Rosh Hashana and Yom Kippur. Those all seem to be overshadowed by the looming Pinkification of October.
In October, there are other lovely holidays to support. Halloween for one - the one where we dress in costume and eat lots of candy, never mind Columbus Day and a host of other minor celebrations.
November includes many events including Veterans Day and Thanksgiving but it in recent years the squabbling that has resulted from Pinktober overwhelms everything until Thanksgiving. It also includes the great American Smokeout, Lung Cancer Awarness and Pancreatic Cancer awareness month.
What I am trying to say is stop supporting on pinkification and focus on research and screening for underserved populations.
Showing posts with label breast cancer. Show all posts
Showing posts with label breast cancer. Show all posts
Geographic variances in breast cancer
Recently a new strain of triple negative breast cancer was found in Ghanian women. This is a strain that is not found elsewhere. The result - a new treatment needs to be developed.
It is a fact that different groups - ethnic and racial - are diagnosed with different diseases or types of diseases at different rates. For example Ashkenazi Jewish women develop breast cancer at a higher rate than other women.
But I have never heard of a new variant of cancer being diagnosed by geographic area.
This opens a whole new direction for cancer research. Women from different parts of the world could be influenced by their local genetic, food, and environmental factors which could skew research results. I don't know how much this is taken into account by the pharmaceutical industry.
I do know that drugs are developed and tested world wide and then start getting approvals from the FDA and its counter parts in other countries. To be eligible for these clinical trials, patients have to meet specific criteria. The rates of clinical trial participation vary from city to city, state to state, and country to country, for a variety of reasons. But this means it is possible that patients who do not meet the criteria could have specific variances in their disease that are not noted.
Am I making sense? Sometimes I wonder.
The point I am trying to make is does current cancer research focus on the big groups that fit into the clinical trial criteria and not take into account the little subgroups that are now being discovered?
It is a fact that different groups - ethnic and racial - are diagnosed with different diseases or types of diseases at different rates. For example Ashkenazi Jewish women develop breast cancer at a higher rate than other women.
But I have never heard of a new variant of cancer being diagnosed by geographic area.
This opens a whole new direction for cancer research. Women from different parts of the world could be influenced by their local genetic, food, and environmental factors which could skew research results. I don't know how much this is taken into account by the pharmaceutical industry.
I do know that drugs are developed and tested world wide and then start getting approvals from the FDA and its counter parts in other countries. To be eligible for these clinical trials, patients have to meet specific criteria. The rates of clinical trial participation vary from city to city, state to state, and country to country, for a variety of reasons. But this means it is possible that patients who do not meet the criteria could have specific variances in their disease that are not noted.
Am I making sense? Sometimes I wonder.
The point I am trying to make is does current cancer research focus on the big groups that fit into the clinical trial criteria and not take into account the little subgroups that are now being discovered?
Its all about the language
Who calls it a relapse when cancer recurs? I didn't know anyone did. It has a different connotation. But maybe in Australia its common.
There is a new bit of medical research (because we have to keep those researchers working) in Australia where they found a gene that half of women with estrogen positive breast cancer have. If women have the gene, they could alter the timing of chemotherapy.
Basically a basic blood test could determine if patients have the gene.
"The test would be used to determine when cancer cells are most vulnerable to chemotherapy, which would be used to kill them off and prevent a relapse.
At present patients with this type of cancer typically receive anti-oestrogen therapy and generally respond well. Within 15 years, however, half develop drug resistance, followed by relapse and death."
How's that for putting it morbidly? Nice - huh?
"Scientists believe the anti-oestrogen therapy weakens the BCL-2 gene, which protects the cancer.
The idea would be to test all patients and correctly time the use of chemotherapy to kill off the cancer and prevent a relapse when the gene is sufficiently weak."
So its much more specific.
But its a theory now and has to go through testing and trials and don't go holding your breath because it will be quite a while.
I just wish that they could be a little nicer in their phrasing and skip the damn word 'relapse'.
There is a new bit of medical research (because we have to keep those researchers working) in Australia where they found a gene that half of women with estrogen positive breast cancer have. If women have the gene, they could alter the timing of chemotherapy.
Basically a basic blood test could determine if patients have the gene.
"The test would be used to determine when cancer cells are most vulnerable to chemotherapy, which would be used to kill them off and prevent a relapse.
At present patients with this type of cancer typically receive anti-oestrogen therapy and generally respond well. Within 15 years, however, half develop drug resistance, followed by relapse and death."
How's that for putting it morbidly? Nice - huh?
"Scientists believe the anti-oestrogen therapy weakens the BCL-2 gene, which protects the cancer.
The idea would be to test all patients and correctly time the use of chemotherapy to kill off the cancer and prevent a relapse when the gene is sufficiently weak."
So its much more specific.
But its a theory now and has to go through testing and trials and don't go holding your breath because it will be quite a while.
I just wish that they could be a little nicer in their phrasing and skip the damn word 'relapse'.
Preventive Medicine or Too Much of a Good Thing
When do we draw the line for preventive medicine? The latest ASCO guidelines for high risk, post menopausal women to prevent breast cancer recommend proactively taking Evista, Aromasin, or Tamoxifen to reduce risk. I had already heard about Tamoxifen but not Evista or Aromasin.
When I first read this the first thing that jumped into my tiny chemo-fogged/fibro-fogged brain is this a big ploy by the pharmaceutical companies to generate millions of new patients? That would be a huge conspiracy theory that I immediately pushed away.
The next thing that leaped into my tiny chemo-fogged/fibro-fogged brain is that its getting to be that we need to stop enjoying ourselves and live preventatively with no fun? The guidelines end with:
"If you have a higher-than-average risk of breast cancer, it makes sense to do everything you can to keep your risk as low as it can be. There are lifestyle choices you can make, including:
And exercising regularly at the highest intensity possible? This is getting to be too much in my book. Just tell me to live healthy and I can handle that.
I am not dissing ASCO here. They are a wonderful organization but I think that this is overkill.
Yes preventive medicine is a good thing but this is too much. I'm sorry.
When I first read this the first thing that jumped into my tiny chemo-fogged/fibro-fogged brain is this a big ploy by the pharmaceutical companies to generate millions of new patients? That would be a huge conspiracy theory that I immediately pushed away.
The next thing that leaped into my tiny chemo-fogged/fibro-fogged brain is that its getting to be that we need to stop enjoying ourselves and live preventatively with no fun? The guidelines end with:
"If you have a higher-than-average risk of breast cancer, it makes sense to do everything you can to keep your risk as low as it can be. There are lifestyle choices you can make, including:
- maintaining a healthy weight
- exercising regularly at the highest intensity possible
- limiting or avoiding alcohol
- limiting processed foods and foods high in sugar
- eating healthy, nutrient-dense food
- not smoking"
And exercising regularly at the highest intensity possible? This is getting to be too much in my book. Just tell me to live healthy and I can handle that.
I am not dissing ASCO here. They are a wonderful organization but I think that this is overkill.
Yes preventive medicine is a good thing but this is too much. I'm sorry.
Fifteen Days? Really?
This I do not understand. I found an article on the how this new test speeds up the testing of the sentinel lymph node in breast cancer surgery in the UK. Previously it took 15 working days (!!!!) to get the test results. That's three weeks. That's completely crazy.
When I had my (bad) lumpectomy here in the US, I was told the instant test during surgery of the sentinel node had a margin of error of 50% and it really wasn't worth doing. The sentinel node was checked by the lab after surgery to confirm the results. I know several women who were told that the test they had during surgery was wrong so I guess my surgeon was right on this.
Now that was six years ago so technology must have changed and now there is a new test available in the UK for instant testing of the sentinel node during surgery. I hope the margin of error is less now.
But I digress. I just do not understand why it takes a lab in the UK 15 working days to confirm the presence of cancer. Three weeks? In my non medical understanding it is a relatively quick test - not like the ones which need to grow cells or something.
I remember being promised my results within a week and getting them in about four days. So why does it take three weeks on the other side of the ocean?
When I had my (bad) lumpectomy here in the US, I was told the instant test during surgery of the sentinel node had a margin of error of 50% and it really wasn't worth doing. The sentinel node was checked by the lab after surgery to confirm the results. I know several women who were told that the test they had during surgery was wrong so I guess my surgeon was right on this.
Now that was six years ago so technology must have changed and now there is a new test available in the UK for instant testing of the sentinel node during surgery. I hope the margin of error is less now.
But I digress. I just do not understand why it takes a lab in the UK 15 working days to confirm the presence of cancer. Three weeks? In my non medical understanding it is a relatively quick test - not like the ones which need to grow cells or something.
I remember being promised my results within a week and getting them in about four days. So why does it take three weeks on the other side of the ocean?
More numbers again
Yesterday afternoon I went for a six month follow up with my oncologist. I realized in the morning that I should have some questions to ask her. I mean why see an oncologist if you have no concerns? So I had to think.
After some deep thought I came up with issue number one - what about staying on Femara longer? New research has shown that longer is better in terms of preventing recurrence of breast cancer. I did not see her in person on my last visit to her office as she had the flu but I had spoken to her afterwards.
Then I decided I needed the big question answered. What is my prognosis for recurrence? I did ask my previous oncologist this once right after treatment ended, before he moved on to research. But that was five years ago and I haven't asked for an update. Why not? It is a big question but I figured I should know. Why have I gone through all this treatment and follow up anyway?
After pondering this for a few hours, I decided this was it. When I met with her, we discussed me and Femara first. The real issue is that I am handling it well - particularly my bone density has been stable which is a big criteria. Its one thing to prevent cancer recurrence but another thing to give you osteoporosis in the meantime. But my bone density is stable so its a go.
The added benefit of additional years of Femara is seen in the ensuing years. So if I take Femara from 2010-2015, I will continue to see the benefit in 2015-2020. I can live with that.
My next question I think was a bit of a surprise for my oncologist but I did ask her what is my likelihood of recurrence. She said its probably less than 10% at this point based on my diagnosis specifics and treatment. I thought that wasn't bad.
But I immediately went home and looked up breast cancer statistics and see how I compared. A normal 50 year old woman has a 2.38% chance of getting breast cancer in the next ten years. But I have already skewed the odds that say a 40 year old woman has a 1.47% chance of getting breast cancer by age 50.
So its all a bunch of numbers but I can't let them mean much to me.
But the best news is I don't have to go back and see her again for a year.
After some deep thought I came up with issue number one - what about staying on Femara longer? New research has shown that longer is better in terms of preventing recurrence of breast cancer. I did not see her in person on my last visit to her office as she had the flu but I had spoken to her afterwards.
Then I decided I needed the big question answered. What is my prognosis for recurrence? I did ask my previous oncologist this once right after treatment ended, before he moved on to research. But that was five years ago and I haven't asked for an update. Why not? It is a big question but I figured I should know. Why have I gone through all this treatment and follow up anyway?
After pondering this for a few hours, I decided this was it. When I met with her, we discussed me and Femara first. The real issue is that I am handling it well - particularly my bone density has been stable which is a big criteria. Its one thing to prevent cancer recurrence but another thing to give you osteoporosis in the meantime. But my bone density is stable so its a go.
The added benefit of additional years of Femara is seen in the ensuing years. So if I take Femara from 2010-2015, I will continue to see the benefit in 2015-2020. I can live with that.
My next question I think was a bit of a surprise for my oncologist but I did ask her what is my likelihood of recurrence. She said its probably less than 10% at this point based on my diagnosis specifics and treatment. I thought that wasn't bad.
But I immediately went home and looked up breast cancer statistics and see how I compared. A normal 50 year old woman has a 2.38% chance of getting breast cancer in the next ten years. But I have already skewed the odds that say a 40 year old woman has a 1.47% chance of getting breast cancer by age 50.
So its all a bunch of numbers but I can't let them mean much to me.
But the best news is I don't have to go back and see her again for a year.
Breast cancer over hype
"...breast cancer has become the most heavily promoted disease in this country, women walk in with information, misinformation, strongly held beliefs, opinions, and frequently a literal army of supporters."
I completely agree with this statement which came from this article which I found to have brought up many thought provoking points. There is no other ailment which has an army of patients, painting the world pink, with the best of intentions, and share good and bad information.
The author, an oncologist with 30 years of practice, concludes with:
"The point is that breast cancer patients are a particular entity, heavily influenced by the media, social networks, and well-meaning friends. They envision themselves as patients, victims, warriors, survivors, experts, activists, victors, and people who just hit a bump in the road and kept moving forward. Pay attention to which one is sitting in front of you."
As you know I have numerous ailments. They all have message boards, support groups, web pages full of information, and all sorts of resources.
None of my other ailments have:
- As many 'warriors'
- Awareness messages on Facebook which want you to post your bra color
- Color coded events
- Arguments over treatment among friends
- As much 'advice' from know it alls who never had the disease.
I meet people all the time with breast and other cancers as well as all sorts of fun ailments. A breast cancer diagnosis turns on the media and the pinkification and takes off. All other ailments seem to have a different effect on the patient. Media influence is a huge part of it.
My advice is pay attention to your doctor's advice.
I completely agree with this statement which came from this article which I found to have brought up many thought provoking points. There is no other ailment which has an army of patients, painting the world pink, with the best of intentions, and share good and bad information.
The author, an oncologist with 30 years of practice, concludes with:
"The point is that breast cancer patients are a particular entity, heavily influenced by the media, social networks, and well-meaning friends. They envision themselves as patients, victims, warriors, survivors, experts, activists, victors, and people who just hit a bump in the road and kept moving forward. Pay attention to which one is sitting in front of you."
As you know I have numerous ailments. They all have message boards, support groups, web pages full of information, and all sorts of resources.
None of my other ailments have:
- As many 'warriors'
- Awareness messages on Facebook which want you to post your bra color
- Color coded events
- Arguments over treatment among friends
- As much 'advice' from know it alls who never had the disease.
I meet people all the time with breast and other cancers as well as all sorts of fun ailments. A breast cancer diagnosis turns on the media and the pinkification and takes off. All other ailments seem to have a different effect on the patient. Media influence is a huge part of it.
My advice is pay attention to your doctor's advice.
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.
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.
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.
Being social can help breast cancer outcomes
So even if you feel like crap from chemo and want nothing but to sit in a corner and stare vacantly out the window, be social. A new study (because all those researchers need to keep busy) recently found that women with breast cancer who are social - have better social and community ties - have better outcomes and handle the disease and side effects better.
What did I do at my diagnosis? I started a blog, then joined two in person support groups, joined Twitter, then cancer message boards, then Crazy Sexy Cancer, then Facebook, then so many other online communities I can no longer remember them, never mind keep up with them.
I started meeting other breast cancer people in person through my support group and other activities. I made lots of cancer friends who are now not just cancer friends.
There were many days when I was happy to sit in a corner and stare vacantly out the window but I think I did okay.
What did I do at my diagnosis? I started a blog, then joined two in person support groups, joined Twitter, then cancer message boards, then Crazy Sexy Cancer, then Facebook, then so many other online communities I can no longer remember them, never mind keep up with them.
I started meeting other breast cancer people in person through my support group and other activities. I made lots of cancer friends who are now not just cancer friends.
There were many days when I was happy to sit in a corner and stare vacantly out the window but I think I did okay.
Well they scared the crap out of us
When women are diagnosed with breast cancer, they are brainwashed scared into thinking that they will get lymphedema and end up with an arm the size of an elephants. If they have an axillary node dissection where a dozen or more lymph nodes are removed in the hunt for evil cancer cooties, they are given a list of rules for the rest of their life:
Now they come out with a study which says "Breast Cancer Patients’ Fear of Developing Lymphedema Far Exceeds Risk". Well they scared the crap out of this with the 'rules' they gave us. I even had a special session with a nurse to review everything about lymphedema.
I was fine for about a year and a half and fell on my arm. Now I wear a stupid sleeve when I work out. I can't have needles or blood pressure taken on my left side. If I wear a watch on my left wrist, no matter how loosely, my arm feels heavy and swollen for days after.
So maybe they scared me, but they were right. Crap.
- do these stupid wall climbing exercises to make sure your arm doesn't swell up
- never allow anyone to take your blood pressure or stick any needles in that arm
- never carry a shoulder bag or any bag on that arm that might compromise your circulation
- never lift anything heavy
- never injure your arm or fall on it.
- at any signs of swelling, contact your doctor.
Now they come out with a study which says "Breast Cancer Patients’ Fear of Developing Lymphedema Far Exceeds Risk". Well they scared the crap out of this with the 'rules' they gave us. I even had a special session with a nurse to review everything about lymphedema.
I was fine for about a year and a half and fell on my arm. Now I wear a stupid sleeve when I work out. I can't have needles or blood pressure taken on my left side. If I wear a watch on my left wrist, no matter how loosely, my arm feels heavy and swollen for days after.
So maybe they scared me, but they were right. Crap.
Its about time
Finally, they have done enough research (because the researchers always need to be sure and there are plenty of them out there) to say that there is no connection between breast cancer and thyroid cancer.
For years there have been questions on this. Basically women are more likely to get both. Breast cancer is the most common woman's cancer (I think) and thyroid cancer is most common in young women and growing in incidence. Both are hormone (endocrine) related cancers so I guess it seemed they were connected.
Standard procedure has been for women with both to be tested for Cowden's syndrome which is a genetic condition that has both cancers are indicators. I was tested and I do not have it.
So basically this tells us that all medical research can be proven wrong over time. Can you name one thing that 'they' have not told us was good for us and now is bad or was bad for us and now is good? Which is why everything always needs more research.
For years there have been questions on this. Basically women are more likely to get both. Breast cancer is the most common woman's cancer (I think) and thyroid cancer is most common in young women and growing in incidence. Both are hormone (endocrine) related cancers so I guess it seemed they were connected.
Standard procedure has been for women with both to be tested for Cowden's syndrome which is a genetic condition that has both cancers are indicators. I was tested and I do not have it.
So basically this tells us that all medical research can be proven wrong over time. Can you name one thing that 'they' have not told us was good for us and now is bad or was bad for us and now is good? Which is why everything always needs more research.
I am offended
After thinking about it, I have decided I am offended. Every morning the paper is delivered (yes we read the printed newspaper) and we fight over the comics. Usually I start with the front page and then once my husband has read the comics, he passes them to me.
We both read them regularly and are convinced there is an 'Arlo and Janice' camera in our house documenting our lives which are drawn into the cartoon. We usually snicker about different ones and tell each other which ones are particularly good.
Today I was disappointed by the Bizzarro cartoon. Of course I can't find it online to link here.
Essentially it is a one eyed woman in a bra store, being told that they only sell two cup bras there. I can see the humor in a cartoon woman with one eye and then one of everything else. But from a breast cancer point of view, I can feel the offense. Many women who had mastectomies and did not opt for reconstruction would be happy with a single cup bra.
I guess I think its insensitive and I choose to be offended.
We both read them regularly and are convinced there is an 'Arlo and Janice' camera in our house documenting our lives which are drawn into the cartoon. We usually snicker about different ones and tell each other which ones are particularly good.
Today I was disappointed by the Bizzarro cartoon. Of course I can't find it online to link here.
Essentially it is a one eyed woman in a bra store, being told that they only sell two cup bras there. I can see the humor in a cartoon woman with one eye and then one of everything else. But from a breast cancer point of view, I can feel the offense. Many women who had mastectomies and did not opt for reconstruction would be happy with a single cup bra.
I guess I think its insensitive and I choose to be offended.
Another government report
There was a big interagency report released this week on breast cancer. This was the result of a requirement by a 2004 Act of Congress requiring Health and Human Services (and the creation of an alphabet soup agency - IBCERCC) to review "the current state of breast cancer and the environment research and make recommendations for eliminating any knowledge gaps in this area."
You can read more detail about the report, a summary of its findings, and the report itself (and the Act of Congress) here. If you google it, you can find oodles of information on it - critiquing the report, praising it, and summarizing it. Here's one article on it and another one.
My biggest take away, I have not read the report only the summary articles, is this (I can have an opinion even though I only read the Cliff notes version). :
"What’s needed is better coordination among researchers and increased research funding, according to the report."
I'm all for better coordination among researchers. I mean do they talk to each other and share their progress or do they sink into holes in the ground and focus on what they are doing and hide the results until they can get a patent or from fear someone will steal their idea? Or do they talk to each other and share progress between labs during the process?
All I can tell at this point is that it took an Act of Congress, a government report, an alphabet soup agency, and nine years to tell us sharing is good.
You can read more detail about the report, a summary of its findings, and the report itself (and the Act of Congress) here. If you google it, you can find oodles of information on it - critiquing the report, praising it, and summarizing it. Here's one article on it and another one.
My biggest take away, I have not read the report only the summary articles, is this (I can have an opinion even though I only read the Cliff notes version). :
"What’s needed is better coordination among researchers and increased research funding, according to the report."
I'm all for better coordination among researchers. I mean do they talk to each other and share their progress or do they sink into holes in the ground and focus on what they are doing and hide the results until they can get a patent or from fear someone will steal their idea? Or do they talk to each other and share progress between labs during the process?
All I can tell at this point is that it took an Act of Congress, a government report, an alphabet soup agency, and nine years to tell us sharing is good.
On being an inspiration
Yesterday I went to the wake for a friend, Sue, who had been diagnosed with breast cancer 21 years ago. When I met her in the breast cancer support group I used to attend probably around five years ago, she had been stage IV for a number of years - probably more than a dozen.
She was quiet when she started attending the support group but then started to open up about her story. She had a cheerful smile and a twinkle in her eyes. No matter what she was going through you would always smile. Over the years, I helped convince her to go on a Casting For Recovery retreat and watched her learn to fly fish - we never caught anything but it was the fun.
I stopped attending the support group several years ago but would still see her at events hosted by the center which runs the group. She was always smiling and poised, never letting the inner stresses dampen her spirits.
I met her family yesterday. Her husband, who I had never met before, asked how I knew her and I told him about the breast cancer support group. He said that it was a wonderful little organization and told me the story that she had told him. One of the other members of the support group came up to Sue and told her that she was an inspiration to her on how to live with breast cancer.
I thought about that and decided that I agree. She had late stage cancer and greeted the world with a smile and a twinkle in her eye. She didn't let it stop her from trying something new and having fun. I am inspired as well.
She was quiet when she started attending the support group but then started to open up about her story. She had a cheerful smile and a twinkle in her eyes. No matter what she was going through you would always smile. Over the years, I helped convince her to go on a Casting For Recovery retreat and watched her learn to fly fish - we never caught anything but it was the fun.
I stopped attending the support group several years ago but would still see her at events hosted by the center which runs the group. She was always smiling and poised, never letting the inner stresses dampen her spirits.
I met her family yesterday. Her husband, who I had never met before, asked how I knew her and I told him about the breast cancer support group. He said that it was a wonderful little organization and told me the story that she had told him. One of the other members of the support group came up to Sue and told her that she was an inspiration to her on how to live with breast cancer.
I thought about that and decided that I agree. She had late stage cancer and greeted the world with a smile and a twinkle in her eye. She didn't let it stop her from trying something new and having fun. I am inspired as well.
Its a good thing my mother made me eat tofu
Not really because I hate tofu. But I digress.
I guess it is now important that my mother made me eat tofu because according to a study at Georgetown, women who start eating soy as an adult tend to develop treatment resistant breast cancer tumors. But those who eat soy as a child and then through adulthood are more likely to develop tumors which are very sensitive to treatment.
This means I have eaten my lifetime quota of soy and have no reason to eat any more. I dislike tofu with a passion and have a good excuse for never eating it again. I tried soy yogurt once and found it tastes like Elmer's glue (according to my childhood memories) and tried giving it away to my 'healthy' friends who told me they didn't like it either.
Other things I never have to eat again:
And I will never eat tofu again.
I guess it is now important that my mother made me eat tofu because according to a study at Georgetown, women who start eating soy as an adult tend to develop treatment resistant breast cancer tumors. But those who eat soy as a child and then through adulthood are more likely to develop tumors which are very sensitive to treatment.
This means I have eaten my lifetime quota of soy and have no reason to eat any more. I dislike tofu with a passion and have a good excuse for never eating it again. I tried soy yogurt once and found it tastes like Elmer's glue (according to my childhood memories) and tried giving it away to my 'healthy' friends who told me they didn't like it either.
Other things I never have to eat again:
- processed food which has soy added to make it healthy - this includes many of the weight loss programs which supplement their foods with soy.
- Tofu (I add this again as a reflection of its 'ick' factor)
And I will never eat tofu again.
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'.
Five New Breast Cancer Controversies
At the San Antonio Breast Cancer Symposium last week, there are five new breast cancer discoveries controversies. I know a couple of people who was there and hope to hear more from them but this is what I have for opinions so far:
1. Claim: Chemobrain starts before starting chemotherapy.Results were presented to show that in a study women who had not gone through chemo were showing the symptoms - which can also be caused by worry and fatigue. Hello, if you are diagnosed with cancer, have surgery, and are facing chemotherapy perhaps you might be a tad bit worried and tired?
My take on this is that first of all this study was done by people who don't believe chemo brain is real. Symptoms of chemobrain could also be the same as those caused by worry and fatigue. But the difference with chemobrain is the symptoms do not go away once you stop stressing and get some rest. There is a difference.
2. Claim: Taking Tamoxifen for ten years is better than five years. First of all this isn't new. This is just a new study that they are showing results. My take is that more testing is needed as it goes against what has previously been shown.
3. Claim: Doubling the dose of fulvestrant is better. I have no opinion here as I do not know anything about this drug.
4. Claim: Twice as long is not better with Herceptin. My take is this is only confirming previous research.
5. Claim: Avastin isn't indicated for breast cancer. My take is this is not new. This has been resolved a while back.
Let me just say I am not a doctor or researcher, I am merely a patient. I admit I am not perfect so I could be wrong and these are my opinions.
So overall, We have one new claim that I, and many other women with chemobrain, disagree with completely. One claim I can't say anything about. And three claims is that I say are not new.
Hmmm.... I think I need some more proof to show that these are truly new and breakthroughs in some way. But I am not buying most of these.
1. Claim: Chemobrain starts before starting chemotherapy.Results were presented to show that in a study women who had not gone through chemo were showing the symptoms - which can also be caused by worry and fatigue. Hello, if you are diagnosed with cancer, have surgery, and are facing chemotherapy perhaps you might be a tad bit worried and tired?
My take on this is that first of all this study was done by people who don't believe chemo brain is real. Symptoms of chemobrain could also be the same as those caused by worry and fatigue. But the difference with chemobrain is the symptoms do not go away once you stop stressing and get some rest. There is a difference.
2. Claim: Taking Tamoxifen for ten years is better than five years. First of all this isn't new. This is just a new study that they are showing results. My take is that more testing is needed as it goes against what has previously been shown.
3. Claim: Doubling the dose of fulvestrant is better. I have no opinion here as I do not know anything about this drug.
4. Claim: Twice as long is not better with Herceptin. My take is this is only confirming previous research.
5. Claim: Avastin isn't indicated for breast cancer. My take is this is not new. This has been resolved a while back.
Let me just say I am not a doctor or researcher, I am merely a patient. I admit I am not perfect so I could be wrong and these are my opinions.
So overall, We have one new claim that I, and many other women with chemobrain, disagree with completely. One claim I can't say anything about. And three claims is that I say are not new.
Hmmm.... I think I need some more proof to show that these are truly new and breakthroughs in some way. But I am not buying most of these.
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