Wednesday, April 29, 2009

Go Public Project: Part 2

If you haven't read the preface to the Go Public Project, please read this post first.

Welcome to the first of four conversations we will have together here in the blog community! I was excited to hear some positive feedback on yesterday's post, and I hope more of you choose to share your experiences and opinions with us. Every comment is important because at the end, our voices and thousands of others, will be put together to be presented at the Global Leadership Forum for Cancer Control this September.

I have already given the introduction to this project and the purpose of these conversations in an earlier post (click link for post). If you would like, please leave a comment here introducing yourselves and what reasons you had to join in the conversation.

Some facts:
  • Cancer is the leading cause of death globally. The WHO estimates that 7.6 million people died of cancer in 2005 and 84 million people will die in the next 10 years if action is not taken.
  • It doesn't have to be this way - cancer is to a large extent avoidable. Many cancers can be prevented. Others can be detected early in their development, treated and cured. Even with late stage cancer, the pain can be reduced, the progression of the cancer slowed, and patients and their families helped to cope.
  • By applying what we already know about cancer control, we can cut the rate of cancer deaths by as much as half over the next generation worldwide.
  • There are 6 key areas where we can focus our actions to help create a new response to cancer, fast. Everyone has a role to play - citizens, patients, medical professionals and government.
  1. Prevention: Up to half of all cancers are preventable by reducing risk factors. Changing our lifestyles can reduce the chances of getting cancer - getting support to stop smoking, being more physically active, eating healthier and reducing sun exposure. Reducing exposure to cancer causing agents like pollution and pesticides can help lower the risk even more. We must do more to prevent cancer.
  2. Early detection: By finding cancer earlier, lives can be saved. Screening programs for breast, cervical, colorectal and other cancers can reduce mortality.
  3. Treatment: Cancer patients are waiting too long for treatment. The earlier you treat, the better. There is a severe shortage of cancer specialists around the globe.
  4. Stigmas: In many countries, patients are ashamed of their illness.
  5. Supportive Care/Survivorship: The right supportive care interventions can imporove quality of life and many increase survival. Patients are not getting the pain relief and rehabilitation they need. Any survivorship support is lacking. We must support the whole person.
  6. Research: Getting breakthrough ideas and therapies from bench to bedside is taking too long. We need to get more knowledge of the frontlines faster.
Cancer control
aims to prevent cancer, cure cancer, and increase survival rates
and quality of life for those who develop cancer,
by converting knowledge gained through research,
surveillance and outcome evaluation
into strategies and actions.

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Now,

All of us bring a story to the table.

Our first conversation is geared toward sharing
our cancer experiences with each other.

Please feel free to share your personal or professional experience with cancer.

What has been the most difficult aspect of your cancer experience?

The most inspiring?

Regarding the cancer system, what do you think is working well / not so well?

Were you aware that cancer can be controlled?

If no, what is your reaction to this claim?

-------------------------------------------------------

Please feel free to leave your comments regarding the previous questions and claims. Don't forget to give us a brief introduction and let us know why you are joining the conversation!

Also, don't hesitate to add a response to a comment or ask a question of any person taking part in our conversation today. I want this to feel as much like a real face to face conversation as possible - debate is healthy and welcome here! Come back as many times as you'd like to add more to the conversation and to see if anyone has asked you questions about your own experience that you could answer!

Thank you so much for participating today.

18 comments:

Shell said...

Hi there...so I'm a new follower to the Sweet Tea Diaries and I'm so glad we're here talking about cancer! I truly feel that cancer touches all of our lives in some way at some point.

The reason I am here is because my mother is a breast cancer survivor. Her sister, unfortunately, passed away from breast and bone cancer just over 10years ago. Breast cancer isn't the ONLY cancer to take lives from my family, but it's one of the main reasons I am headed to a genetic counselor next week.

It was very hard for me to come to grips with the fact that my mother was diagnosed with breast cancer. This was just 2.5 years ago. She had a single mastectomy three days after Christmas in 2006. I'm glad to say that she's doing well. But, what worries me the most is how vague her genetic test was. I mean, I would like to know what my odds are considering that 2 out of 5 sisters in my mom's family have had breast cancer.

Anyways, I truly believe in prevention & early detection. There are so many things that we all can do to help lessen our chances with cancer. I will admit, I am not 100% faithful and I do have some lifestyle changes that need to be made. But, I am aware and very conscious of the fact that cancer is out there and it would come knocking at my door one day if I don't do something to change that.

Brandi said...

Hello my name is Brandi. Thanks so much for doing this Angela.

No one in my family had ever had cancer before. So when my mother got diagnosed with lung cancer I did not know what to expect.

She was only in the hospital for 2 weeks before she passed away. I wished I had know some of the things I know now before she got sick.

MrsSouthernBelle said...

I lost my uncle and grandpa to cancer a little over 3 years ago. It was very difficult watching them go through everything.

I think that early detection and treatment are key in cancer cases. In my uncle's case, his bad cough was mistaken for many different things before it was diagnosed as lung cancer. If his doctors would have done the initial leg work, he could still be here with us today.

Thanks Sweet Tea for hosting such a great event.

Dollface said...

When I was in middle school, one of my best friends was diagnosed with Leukemia. When I was 11 years old I had no idea what Cancer was or that it was even possible to happen to someone I knew. She died in 10th grade. I remember feeling so upset that not only I lost her, but she would never be able to kiss someone, dance to her prom or wedding, have children, see her brother's children, smile again.... I just wish I knew more then and there was more I could do...

Katie said...

Angela,
I wish I had something profound to contribute to the conversation...but I don't. I really appreciate that you're hosting this though!

Miss. Pretty said...

On my mom's side of the family skin cancer is very much an issue. My mom, her sister and grandmother have all had skin cancer. Basil Cell I believe, so not as bad as others. But my Great-Grandpa had Melanoma and unfortunately took his own life because he couldn't deal with the pain.

My step-mom is currently recovering from a double mastectomy. She is 43. In her 20's she had Hodgkin s Lymphoma. She was told she would never have children and most likely have about 10 years in remission before she would develop something else. The doctor were wrong about the children part and she has a healthy, beautiful 11 year old daughter. But unfortunately she was diagnosed with Breast Cancer in January.

xoxo sarahbeth said...

Hey y'all! While I have never personally had to battle cancer, my Mama has had to fight five or so different bouts of skin cancer, starting when I was in elementary school. Both of my grandmothers have battled breast cancer, as well as a number of great aunts. But the most upsetting instance in my life was my friend Iveliesse Felix; Ive was diagnosed with brain cancer April 20, 1999 when we were in fourth grade. She lost her battle on September 14, 2001. Ive was an inspiration, because through all the pain and mockery that came in middle school from her bald head and wheelchair, she kept her sunny disposition and we maintained our friendship. We would still talk with her, even when she could only communicate through typing into a word document; we still watched movies and went to her house to hang out and for dinner parties, to keep the most normal routine possible. Ive loved her Puerto Rican heritage and the brought colors of the flowers from her homeland. I still remember clearly, our fourth grade camping trip and her not coming last minute, only to find it was because she had cancer. I still have my heavenly hug bear that another friend's mom bought each of us when Ive passed, including a bear for Ive to have in her casket. I try very hard to live my life fully, in part because I know Ive's life was cut so short and I want to live a life she would be proud of, since she didn't get that opportunity. She was the most brave, humble, kind and compassionate person through her trial, and I want to honor my friend with my actions.

Channa said...

I think every story shared is an amazing opportunity to bring light to this disease. My family has been greatly touched by cancer, too many to mention. Unfortunately every time it is something that feels as though you can not fight, your voice will not be heard. Alot of the reason my husband and I choose to live a more natural life is because we want to be around to see our children grow up and I don't want them to have to experience the pain of cancer. As I have and am currently.

Kate said...

My stepmom has been cancer free for over 5 years now. It was very upsetting when she was diagnosed. She was (is) very healthy-always eats well, exercises, never smoked, etc. This is what makes me so mad. I know others who smoke for decades and never get cancer. It just doesn't seem fair! I don't wish cancer upon anyone but at the same time I have a hard time being friends with anyone who knowingly does something that could increase their risk of cancer (not wearing sunblock, smoking, etc).

elle said...

Thanks for doing this, Angela. I think this is such a great idea!

My grandfather died of cancer (pancreatic that quickly spread to other organs) and it was really hard to see him go through it. I was only 12 at the time, so I can only imagine how much of the pain, sadness, and suffering was hidden from me since I was so young.

I, like one of the other commenters, try to do what I can to be as healthy as possible (good diet, exercise, sunscreen, no smoking). And while I do have areas to work on (too much ice cream and too little exercise!), I am trying to be a healthier person.

I think our generation (born in the 80s and beyond) has every advantage in the world because we were raised learning that cigarettes are bad, sunscreen is a must, what foods are rich in antioxidants, etc. I don't have children yet, but I know I'm going to have to (and, more importantly, want to) be a great example for them. Plus, I want to be around to see my children, grandchildren, and great-grandchildren.

It is very hard for me to wrap my brain around why some people treat themselves so horribly when all of the information is out there. There is a relative on my husband's side- he is obese, has already had a heart attack, has type 2 diabetes, smokes, and eats terribly. And doesn't exercise. He's doing EVERYTHING wrong, and has no desire to do anything differently. I should also mention that he is an educated man who knows better. It's frustrating to try and help someone who refuses to change. Doesn't he want to see his grandchildren grow up and get married? I just don't understand it. I guess all I can do is just keep trying to help him make lifestyle changes and be a role model for his young grandchildren.

Adrianne said...

My dad (56 years old) started going to the doctor last year, because he thought there was something wrong with his stomach. After many tests, the doctor wanted to conduct surgery on my dad's bladder. After surgery in January 2009, my dad was diagnosed with Bladder Cancer. Once pathology was able to test what was removed from my dad's bladder, he was diagnosed with a very aggressive form of Cancer. As the Cancer was aggressive, my dad was immediately referred to MD Anderson. MD Anderson is one of the top (if not the top) Cancer Hospitals in this country. My dad had his bladder, prostate, lymph nodes and other parts removed and he has been healing since the end of March. This month he found out that he is now CANCER FREE!

My family does not have a history of Cancer. My dad started running Marathon's when he turned 50. He eats well, exercises and leads a very active life. The only contributing factor to Cancer was that my dad was a casual smoker for many years.

What was most difficult was the idea of my dad being in pain. What was most inspiring was my dad conquering the pain...and Cancer! What is working well are hospitals such as MD Anderson. People travel from around the country, and world, to seek treatment at MD Anderson.

For anyone who is directly or indirectly dealing with Cancer, the one recommendation I received, when inquiring about my dad, was to see a Specializing Oncologist.

For anyone wanting to read more about my dad's experience, please feel free to visit his blog, bmilligan.blogspot.com. After being diagnosed with Cancer, my dad started blogging. I feel he found it to be a comforting outlet to his experience.

Thanks to Angela for hosting this forum! My dad is a HUGE inspiration in my life and I feel fortunate to be able to share his success with all of your readers!

Danielle said...

My grandmother had skin cancer, and a close family friend (who had two very young children) passed away from breast cancer. I was in the hospital the day she passed away. I don't really have any words to describe how horrible it was.

I think the fact that it seems so many more people have cancer these days is really scary. We hear about all these things to avoid (plastic water bottles etc.) but the truth is, we just don't know what causes it.

People who never smoked a day in their life have died from lung cancer. It's just so scary.

Thank you so so much for writing this post. For those who have had a family member battle cancer, I am sure this will be a nice way to share their story.

I know this is off topic, but I tagged you on my blog :)

suburban prep said...

Cancer touches most everyone.
In October 2000 my sister was 35 and pregnant with her second child. Her first child had passed in Dec 1999 shortly after my sister gave birth to her. So when they found out they were pregnant again they were so happy but then my sister found out she had stage 4 Non-Hodgkin's Lymphoma. She went through the months of chemo and was told she was cancer free. But a few short weeks later she felt worse and it was discovered that it was back and stronger. She needed a bone marrow transplant. While all of her siblings didn't match her there was a bone marrow donor out there for her and she received the marrow in August 2001. Every 6 months she has her check up with the oncologist. All I can say is that she and her husband and their daughter (adopted in 2004) live each day.

I have had others in my family touched by cancer as my Father had his younger brother pass away in 1980 at age 46. My mother had a younger brother pass away when he was in his mid 50's and my grandmother on my mother's side as well when she was in her early 60's.

Each person lives with his or her trials and tribulations and it is what you make of your life.

Lola Cupcake said...

What stood out for me the most in this post was the word PREVENTION. I think that this is really part of a larger discussion about what is wrong with healthcare in our country in general. I was speaking with a doctor yesterday, actually, who let me know that in Vietnam most people go to the doctor at least once a month and that the general attitude towards health is much less "quick fix" than he sees here in the US. I have been touched by cancer through both family members and friends and in almost every case it was either caught very early (and turned out okay) or caught WAY too late and missed by several doctors. I think we as a country need to be much more proactive about screening and early detection, and a healthy preventative lifestyle while we search for a cure.

In terms of support for cancer patients and their families I think there are a ton of great organizations working tirelessly to help fight the long hard fight that is cancer.

As far as controlling cancer- I think for many types of cancer that is extremely true. For more rare forms though I am not so sure and would love to hear more.

Perfectly Pleasant said...

I agree with Lola Cupcake... it is all about prevention (or doing the best we can to prevent.) If that means eating better and getting active more or requesting tests and getting all the screenings. No one likes going to the gyno every year, but cervial cancer is one of those that can be (in most cases) treated early. And I think part of the problem is the cost of medical coverage. I pay $350 a month for my medical coverage -- it's great coverage but it's more than I'd like to be paying. When people have to pick between paying for a roof over their head and insurance they are going to go with insurance. So the visit to the doctor gets put off until something is wrong and it is maybe too late. If we focused more on prevention then it wouldn't cost as much in the long run.

My great grandmother and grandmother both died of breast cancer and my mom has had numerous (thank God) non-cancerous lumps removed. My insurance won't cover mamograms until I'm 35 (or maybe 40?) even though the doctor recommends I start getting them at 30 -- it just doesn't seem right. Their reason being my mother never/hasn't had it so it isn't "close" enough.

There are many great things being done as far as research and treatment but if people can't afford it then it doesn't matter. Cancer (at least some types) can be controlled, but not if the money isn't being spent to prevent!

~Holly~ said...

Thanks so much for opening up a discussion about this Angela! The other day I mentioned no one in my family had ever gone through cancer but after talking to my mother I remembered that many of my family members have had skin cancer including my grandparents. I guess because it was skin cancer I didn't feel it was as serious as other cancers which is STUPID on my part! Cancer is cancer! My grandfather died a few years ago but now I remember because of the exposure to the sun from being in the military as a Colonel and a fishing guide he had to have many skin cancers removed! Thankfully none of them went untreated and he was okay. My grandmother is now going through the same thing having to have them removed and it's very painful! She's 86 and wishes she had taken better care of her skin. I feel early detection is key! Some people are so nervous about going to their doctor and afraid it might be cancer that they wait until it
s too late! So sad!! I pray for everyone who's commented on this issue and those who cancer had affected in any way!

Chloe said...

as I was reading through everyone's stories, it reminds me of how far the medical community has come in a fairly short period of time when it comes to treating cancer. medicine aside, attitude is very important when it comes to illness. I'm reminded of classes I've taken on healing vs. being cured of an illness. a person who releases their anger, questioning, and guilt about their illness will feel better about everything, no matter the outcome. they are healed. however, someone who retains feelings of resentment (i.e. mad because they did all the "right" things, but still got sick", may eventually be cured of their cancer, but they are not truly healed.

Jules said...

Hello, it’s Jules. First and foremost, I think that cancer is very serious and scary. It makes me sad to think of all the ways and places in your body that cancer can rear its ugly head. I don’t think there is anyone out there that hasn’t been touched by cancer or known someone that has had cancer. This is one of the most important (if not the most important) diseases in my opinion where additional research and exploration is needed to find a cure.

My grandmother passed away from Leukemia and it was detected very late…too late. She got sick fast and we watched her slip away. It was very sad and I remember how hard it was on her children, especially my mother. My grandmother lived a long and fulfilling life, but it was a sad way to see her go. To this point, I think that early detection in key. When something seems off or not right, it should be checked out right away. You just never know and you could be saving yourself

The bright side of this for our generation is that there is a lot of education and facts that weren’t known when our parents and grandparents were growing up. We know that you decrease your risk factors for certain types of cancer by eating a healthy diet, getting regular exercise, not smoking or drinking excessively and using sunscreen. I do believe that through conversations like this, it keeps the issue relevant and makes people feel more comfortable discussing and learning all they can to protect themselves and live a healthier life.

 
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