Through the past forty years, there have been changes in the way we view and treat breast cancer. It started with the 'lets cut out as much as we possibly can'. Radical mastectomies were carried out regularly, permanently disfiguring patients - both emotionally and physically. And leaving them with life long health problems of lymphedema and more.
Gradually, times changed and focused more on detection with the advent of mammograms. My original cancer book printed about 1980, says that they were just beginning to recommend regular mammograms as screening for breast cancer. After this the Komen foundation began to promote early screening which some how devolved into the pink ribbons, pinkification, sisterhood and giant pink wave that overtakes the world every October.
The Komen foundation has managed to give themselves several black eyes in recent years which are proving their downfall. However their efforts, along with that of many other, have greatly helped destigmatize the disease, allowing people to shout the word cancer instead of whisper it in corners.
But as Karuna Jagger, (www.twitter.com/karunajagger) Executive Director of Breast Cancer Action, points out, its time for a change from this pink world to one where we focus on what is really important:
"As the nation's attention focuses on breast cancer during Pinktober, let's stop selling women a false narrative about screening, and instead advocate for more effective treatments, less treatment when possible, and fewer breast cancer diagnoses in the first place. It's time we change the breast cancer narrative once again."
We do not need all the pink to focus on these efforts.
Showing posts with label cancer awareness. Show all posts
Showing posts with label cancer awareness. Show all posts
We knew this would happen
Not to make light of an other's misfortunes but I think that we knew this would happen. Komen (for the Cure) has clearly been on a downturn since the mishandling of the Planned Parenthood epic in 2012. One of their main fundraising efforts has been their three day walks. There used to be 14 around the country. Starting in 2014, there will be 7.
The Three Days are cancelled in Boston, Arizona, Cleveland, Chicago, Tampa, San Francisco, and Washington, DC. This will leave only Atlanta, Dallas/Ft Worth, Michigan, San Diego, Twin Cities, and Seattle.
And example of their recent numbers is here:
"On May 11, thousands of breast cancer survivors and their supporters gathered on the Mall in Washington, D.C., for the annual Susan G. Komen Global Race for the Cure, but attendance at the charity’s signature fund-raising event was down for a second consecutive year.
About 21,000 people registered for that race, down from 27,000 last year and nearly 40,000 in 2011. Fund-raising has also been down: The race generated $5 million in donations in 2011, according to Komen spokeswoman Andrea Rader, but generated $2 million last year."
What does this tell us? Large non profits are increasingly scrutinized by the American public on many levels - what they do with their money, what they support, and the amount paid to their executives.
If I was a leader at Komen I would clearly be taking steps to save the organization as they have clearly been forced to cut their fundraising activities in half. I hope they see what last year's mistake has cost them.
The Three Days are cancelled in Boston, Arizona, Cleveland, Chicago, Tampa, San Francisco, and Washington, DC. This will leave only Atlanta, Dallas/Ft Worth, Michigan, San Diego, Twin Cities, and Seattle.
And example of their recent numbers is here:
"On May 11, thousands of breast cancer survivors and their supporters gathered on the Mall in Washington, D.C., for the annual Susan G. Komen Global Race for the Cure, but attendance at the charity’s signature fund-raising event was down for a second consecutive year.
About 21,000 people registered for that race, down from 27,000 last year and nearly 40,000 in 2011. Fund-raising has also been down: The race generated $5 million in donations in 2011, according to Komen spokeswoman Andrea Rader, but generated $2 million last year."
What does this tell us? Large non profits are increasingly scrutinized by the American public on many levels - what they do with their money, what they support, and the amount paid to their executives.
If I was a leader at Komen I would clearly be taking steps to save the organization as they have clearly been forced to cut their fundraising activities in half. I hope they see what last year's mistake has cost them.
Cancer awareness
I received an email the other day reminding me about getting regular cancer screenings and awareness. I don't think I need much more awareness. I am plenty aware. And I get regular cancer screenings. And more than the average bear. I don't need any more awareness. I would prefer unawareness personally.
But with my medical history, they need to be sure they haven't left a molecule unscreened for potential cancer cooties.
If you need any cancer awareness I'm happy to give some away.
But with my medical history, they need to be sure they haven't left a molecule unscreened for potential cancer cooties.
If you need any cancer awareness I'm happy to give some away.
Thyroid Cancer Awareness Month
September is Thyroid Cancer Awareness month. Its probably awareness month for several other cancers, ailments and conditions. Like all months it also probably has an official birthstone, flower and more. I will focus on thyroid cancer awareness.
What we should all know about thyroid cancer.
Check your neck is the message here.
What we should all know about thyroid cancer.
- It used to be a relatively rare cancer. It has doubled in incidence since the 1990s and is the fastest growing cancer in the US.
- This year the American Cancer Society expects 56,460 cases in the US, this is more than the number of cases of ovarian, leukemia, myeloma, brain, uterine, bone, larynx, gall bladder, rectal, esophageal, stomach, or oral cavity cancers.
- If caught early, it has a relatively high rate of 'cure' but the patient is left with a lifelong chronic condition of having no thyroid.
- Treatment for thyroid cancer is very different from other cancers in its treatment. And it can recur decades later.
Check your neck is the message here.
Everything you wanted to know about thyroid cancer but were afraid to ask
How much do you know about thyroid cancer? Let's start with in a lot of ways it is very different than any other type of cancer in terms of incidence, treatment, life after cancer, etc.
Thyroid Cancer Canada just released a very interesting report which summarizes the disease. Here are a few bullet points on the differences with thyroid cancer and other cancers:
Thyroid cancer is unique in many ways summarized as follows:
Its very different than many other cancers, it is also rapidly increasing in incidence and has the least amount of research. Maybe I should become a lab rat and help them.
Thyroid Cancer Canada just released a very interesting report which summarizes the disease. Here are a few bullet points on the differences with thyroid cancer and other cancers:
- thyroid cancer usually leads to the loss of the thyroid gland -- a major organ of the body -- necessitating life-long hormone replacement and monitoring similar in effect to some chronic diseases
- for the most part there are no early warning signs; no means of prevention of thyroid cancer
- neck exams can find thyroid cancer at an early stage, but currently neck exams are an optional inclusion in most standard physical examinations
- thyroid cancer is now the #1 cancer (in incidence and prevalence) in young women
- wait times for diagnosis and surgery are amongst the longest in the western world
- thyroid cancer has the greatest range of possibilities in prognosis, depending on the type diagnosed
- for some, surgery and treatments have lasting negative after-effects
- 80% of thyroid cancer patients are women
- overall it is very treatable, however males struck with the disease have a lower cure rate
- thyroid cancer is increasing in incidence at a higher rate than any other cancer
- a unique form of treatment -- radioactive iodine therapy -- is an option for the majority of patients
- thyroid cancer has a high rate of recurrence, up to 30 years later
- thyroid cancer patients impacted by low number of resources, and inequitable distribution of tools across the country, including PET scans
- there is a high rate of bankruptcy amongst thyroid cancer survivors
- only 0.1% of cancer research dollars are invested in thyroid cancer
Thyroid cancer is unique in many ways summarized as follows:
| All Cancers | Thyroid Cancer | |
| Treatment | ~60% of cancer patients are treated with radiation therapy such as External Beam radiation (EBR)5 | Less than 3% of thyroid cancer patients have EBR treatment |
| More than 50% of cancer patients receive chemotherapy | Less than 2% of thyroid cancer patients receive chemotherapy | |
| 0% of non-thyroid cancer patients receive RAI treatment | ~60% of thyroid cancer patients receive RAI treatment | |
| Specialized Diagnostic Tools | Thirteen types of cancer have a oncologic indication for PET Scans, internationally | Thyroid cancer is one of only 4 cancers on the PET Registry in ON, yet ON has amongst the lowest number of scans per population |
| Age | 53% are more than 55 years old | Median age is 40 years old |
| Gender | Cancer by gender ratio: women/men - 48/52 | Thyroid cancer gender ratio: women/men - 80/20. Relevant Survival Ratio: 98% survival for women, drops to 94% for men |
| Life Sustaining | It is possible for a person to live with the loss of some organs (due to cancer) and function normally otherwise (ie. not require medication to mitigate the loss) such as with the loss of: one kidney, part of the reproductive organs, part of the liver, part of the intestines, breasts, etc. | The thyroid gland is a major organ of the body. Patients cannot maintain life without a thyroid gland or in its absence, replacement hormone (T4) taken in pill form; with need of frequent monitoring. Therefore, even with a good surgical outcome and excellent prognosis, a thyroid cancer diagnosis is akin to a chronic illness |
Its very different than many other cancers, it is also rapidly increasing in incidence and has the least amount of research. Maybe I should become a lab rat and help them.
The ugly side of pinkification exposed
Finally the film, Pink Ribbons Inc, is opening in the US. I blogged about this Canadian made film earlier this year. But now that it is out, there are more reviews available which gives a better idea of its focus.
Forbes.com has reviewed the film and provides these insights.
"Patients with various stages of breast cancer, public health advocates and researchers raise three important points:
No. 1: “Pink ribbon” marches, marathons and events (illuminating the Empire State Building in pink to create breast cancer awareness, for example) not only waste resources, they mislead public opinion about what’s necessary to treat the disease.
No. 2: Financial benefits to research efforts from “cause marketing” (in which brands such as Yoplait and Ford declare themselves “pink”) are minimal, as is the gain from manufacture and marketing of pink merchandise.
No. 3: The pink industry’s heavy use of war imagery (describing “battle” against breast cancer, for example) is misleading and harmful to the physical and psychological well-being of those whose cure–and lives–depend on effective medicine, not metaphor."
The LA Times makes these comments:
"Even after massive fundraising efforts ($1.9 billion in the last 30 years from Susan G. Komen for the Cure alone), a woman's lifetime odds of contracting the disease have narrowed from 1 in 22 in 1940 to 1 in 8 today. Little of that money has made its way into research into causes, notably environmental factors like contaminants from plastics or livestock treated with hormones, the film argues.
Instead the push has been for early detection and developing a cure—two areas that benefit pharmaceutical companies but not necessarily patients, a mere 20% — 30% of whom come from high-risk groups. You can't cure what you don't understand is one of the film's sobering messages."
NPR also states:
"As one woman observes, describing the treatment of cancer as a "fight" or a "battle" suggests that the disease is always beatable if patients make a heroic effort. The implication is that people who die "weren't trying very hard.""
[Anyone who tries to tell a woman with breast cancer that she isn't trying very hard needs is pretty damn stupid.]
"The disconnect between research and results is one of Pink Ribbons, Inc.'s keenest points. On-screen commentators contend that breast-cancer research is poorly coordinated and badly focused. Fewer than 30 percent of patients have a genetic proclivity for the illness, which indicates that most cases stem from environmental causes — yet relatively little attention is paid to prevention, or to chemicals that mimic estrogen and disrupt the human endocrine system."
A very thought provoking documentary on the ugly side of pinkification. Yes the film gives opportunities to for Komen and other non profits to offer their side but I think these messages are clear. Pink isn't helping. So please go watch the documentary if you can and learn more. If you wish to wear pink ribbons, just be sure to understand what the pink portion is going to and who or what it benefits.
My only problem with this film is that the closest it is showing to me is about 60 miles away - on the very tip of Cape Cod - which isn't very convenient in the summer.
Forbes.com has reviewed the film and provides these insights.
"Patients with various stages of breast cancer, public health advocates and researchers raise three important points:
No. 1: “Pink ribbon” marches, marathons and events (illuminating the Empire State Building in pink to create breast cancer awareness, for example) not only waste resources, they mislead public opinion about what’s necessary to treat the disease.
No. 2: Financial benefits to research efforts from “cause marketing” (in which brands such as Yoplait and Ford declare themselves “pink”) are minimal, as is the gain from manufacture and marketing of pink merchandise.
No. 3: The pink industry’s heavy use of war imagery (describing “battle” against breast cancer, for example) is misleading and harmful to the physical and psychological well-being of those whose cure–and lives–depend on effective medicine, not metaphor."
The LA Times makes these comments:
"Even after massive fundraising efforts ($1.9 billion in the last 30 years from Susan G. Komen for the Cure alone), a woman's lifetime odds of contracting the disease have narrowed from 1 in 22 in 1940 to 1 in 8 today. Little of that money has made its way into research into causes, notably environmental factors like contaminants from plastics or livestock treated with hormones, the film argues.
Instead the push has been for early detection and developing a cure—two areas that benefit pharmaceutical companies but not necessarily patients, a mere 20% — 30% of whom come from high-risk groups. You can't cure what you don't understand is one of the film's sobering messages."
NPR also states:
"As one woman observes, describing the treatment of cancer as a "fight" or a "battle" suggests that the disease is always beatable if patients make a heroic effort. The implication is that people who die "weren't trying very hard.""
[Anyone who tries to tell a woman with breast cancer that she isn't trying very hard needs is pretty damn stupid.]
"The disconnect between research and results is one of Pink Ribbons, Inc.'s keenest points. On-screen commentators contend that breast-cancer research is poorly coordinated and badly focused. Fewer than 30 percent of patients have a genetic proclivity for the illness, which indicates that most cases stem from environmental causes — yet relatively little attention is paid to prevention, or to chemicals that mimic estrogen and disrupt the human endocrine system."
A very thought provoking documentary on the ugly side of pinkification. Yes the film gives opportunities to for Komen and other non profits to offer their side but I think these messages are clear. Pink isn't helping. So please go watch the documentary if you can and learn more. If you wish to wear pink ribbons, just be sure to understand what the pink portion is going to and who or what it benefits.
My only problem with this film is that the closest it is showing to me is about 60 miles away - on the very tip of Cape Cod - which isn't very convenient in the summer.
Here is an inspiration
He's blind.
He's had thyroid cancer.
He's traveling to 30 MLB ball parks in 30 days.
He's raising $900,000 for Thyca - Thyroid Cancer Survivor's Association.
We should all be inspired by Reggie and his story. If we were all so motivated the world would be a better place.
Seriously a bit of altruism would help us all.
He's had thyroid cancer.
He's traveling to 30 MLB ball parks in 30 days.
He's raising $900,000 for Thyca - Thyroid Cancer Survivor's Association.
We should all be inspired by Reggie and his story. If we were all so motivated the world would be a better place.
Seriously a bit of altruism would help us all.
We are few and far between
You can't turn around without running in to women who have had breast cancer. They wear pink, they have ribbons, they have walks, and cities and towns are painted pink. They can bond. They have retreats and get togethers. The month of October no longer leads up to Halloween, it has been pinkified. They get a whole month. If I don't know dozens of women who have had breast cancer, I know hundreds. There are lots of us.
But then there are few and far between long term thyroid cancer people. If there were 10,000 cases a year in the 1970's and early 1980s, how many are there left from them? A few weeks ago, I posted on a thyroid cancer message board asking to connect with others who had lived with it a long time. People who were five and six years out from treatment replied. Is cancer supposed to impair your definition of 'long term'? Definitely it shouldn't. Five and six years is not a long time. Long time is decades. Five years is the stupid little criteria they use in clinical trials to measure outcomes.
Back on the message board, I clarified a few days later and said I was looking to connect with people who were decades out from treatment. One person replied at 15 years out, another pushing 20. Finally a woman from the farthest part of the country from me replied over the weekend and said she is nearly 40 years out asking to connect. I have already sent her a message.
If you have a 'popular' disease like breast cancer with its walks, awareness, fundraisers, blah, blah, blah, it may be very difficult to realize the difference with someone who has a 'rare' disease. Has anyone ever been to a thyroid cancer fundraiser, walk or other awareness event? Probably not. They are just not as common because the disease just isn't as common.
There are other long term cancer people out there. I know others who are 25-30 or more years out from other types of cancer but they had the more popular kinds of cancer. We are the people who had cancer when it was the big C. We proved the big C wrong, by living through it. We may be few and far between but we are still here.
But then there are few and far between long term thyroid cancer people. If there were 10,000 cases a year in the 1970's and early 1980s, how many are there left from them? A few weeks ago, I posted on a thyroid cancer message board asking to connect with others who had lived with it a long time. People who were five and six years out from treatment replied. Is cancer supposed to impair your definition of 'long term'? Definitely it shouldn't. Five and six years is not a long time. Long time is decades. Five years is the stupid little criteria they use in clinical trials to measure outcomes.
Back on the message board, I clarified a few days later and said I was looking to connect with people who were decades out from treatment. One person replied at 15 years out, another pushing 20. Finally a woman from the farthest part of the country from me replied over the weekend and said she is nearly 40 years out asking to connect. I have already sent her a message.
If you have a 'popular' disease like breast cancer with its walks, awareness, fundraisers, blah, blah, blah, it may be very difficult to realize the difference with someone who has a 'rare' disease. Has anyone ever been to a thyroid cancer fundraiser, walk or other awareness event? Probably not. They are just not as common because the disease just isn't as common.
There are other long term cancer people out there. I know others who are 25-30 or more years out from other types of cancer but they had the more popular kinds of cancer. We are the people who had cancer when it was the big C. We proved the big C wrong, by living through it. We may be few and far between but we are still here.
Cancer is hilarious
Well from the patient's side it is, definitely. I posted about being funny last week (or sometime recently that has fallen into the abyss called chemobrain). But some people are funnier than me. I read a blog called 'Cancer is Hilarious' which details the life of Kaylin who had a sarcoma and all sorts of medical adventures. Then in my pursuit to read all things funny about cancer, some how yesterday I stumbled across this fun little project called "Terminally Illin'" where the same Kaylin is raising money on Kickstarter to help publish a cancer cartoon book.
Slightly cynical, slightly irreverent, and REALLY hilarious, "Terminally Illin" is a candid look into the life of a young adult battling cancer, but with a psychedelic, sci-fi twist! It’s more than a comic book: It’s provocative, educational, entertaining, and totally original. Think of "Terminally Illin" as a chemo-induced "Alice in Wonderland' meets campy 'Hollywood' action-adventure.
She's joined by her pet kitty, Iceman, as they set out to destroy the Tumordome, the invading cancer cell army, and their leader - the little dictator that's bent on world domination. But they don't do it alone - they make friends with a rag-tag bunch of weakened immune system cells that are on their last leg. Hilarity and butt-kicking will ensue.
This is their second book. I wish I had a copy of the first book as I wait for this one to come out. Anything that invokes a chemo-induced Alice in campy Hollywood sounds good to me. There is not enough humorous stuff about cancer. There is not enough cancer stuff for young adults with cancer. So you add it up and you get funny stuff for all of us with cancer, especially those on the younger side. I'm all in here.
I will donate to their cause on Kickstarter, I encourage others to donate as well.
Slightly cynical, slightly irreverent, and REALLY hilarious, "Terminally Illin" is a candid look into the life of a young adult battling cancer, but with a psychedelic, sci-fi twist! It’s more than a comic book: It’s provocative, educational, entertaining, and totally original. Think of "Terminally Illin" as a chemo-induced "Alice in Wonderland' meets campy 'Hollywood' action-adventure.
In our story, our hero goes in for her first day of chemo, but ends up getting lost in a fantasy world within her own microscopic body - on a quest to meet her disease face-to-face and kick it's butt!!
This is their second book. I wish I had a copy of the first book as I wait for this one to come out. Anything that invokes a chemo-induced Alice in campy Hollywood sounds good to me. There is not enough humorous stuff about cancer. There is not enough cancer stuff for young adults with cancer. So you add it up and you get funny stuff for all of us with cancer, especially those on the younger side. I'm all in here.
I will donate to their cause on Kickstarter, I encourage others to donate as well.
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