New York Times Articles

jsabol
jsabol Member Posts: 1,145
edited March 2014 in Colorectal Cancer #1
Hi all, this Sunday's New York Times has a front page story about a YOUNG colon cancer survivor and the complicated choices facing all of us with this disease. The feature article "Cancer Patients, Lost in Maze of Uneven Care" and the accompanying articles "Push Hard for the Answers You Require" and "Doing Battle with Insurance Company" are must reads! The president of the American Cancer Society, Dr. Richard Wender, is also taking questions to post the answers on line. The articles emphasize good points and tips for finding our way through this maze.
You can read it on-line at: NYTimes.com
It's gratifying to see this kind of coverage about colon cancer. Best to all.
Judy

Comments

  • Betsydoglover
    Betsydoglover Member Posts: 1,248
    Judy - thanks for the great articles. The variability in medical care is really depressing - and patients for the most part are really in the dark about whether or not they are receiving the best treatment.

    I feel so lucky because I was very naive when diagnosed. I took the local oncologist recommended by both my surgeon and internist (although I live in DC so local can still mean connected with centers like Georgetown and NIH.) My husband talked to two of his physicians after I had my surgery and both said "if I had cancer, I'd see Dr. Aylesworth (my onc)". But I never even thought of going to Georgetown for a second opinion. Still I have done well and she did refer me to NIH for workups and evaluation and seems very well connected with the major cancer centers. If things had not gone as well for me as they have, I know because of this board (at the least) I would know to at least go to Georgetown, University of MD cancer center and Johns Hopkins and see what they have to say.

    Thanks for the links,
    Betsy
  • usakat
    usakat Member Posts: 610
    Hi Judy,

    Thanks for posting about the NY Times articles. I'm also glad to see CRC getting some news coverage...hopefully it will translate into folks getting colonoscopies.

    It will be interesting to see Dr. Wender's Q&A tomorrow to see the types of questions asked and certainly the responses. I actually posted a question.

    Thanks for sharing!
  • Patti1
    Patti1 Member Posts: 109
    Judy,

    Thank you so much for the post with the article on Lost in Maze in the NY Times. What a awesome article, and boy did it hit home for us. We were lucky(we were lost in the maze) and after 5 months with a doctor just saying chemo..chemo..chemo. no surgery we got out of there. Today we are with Shands University of Florida and have a awesome team of doctors that we trust. 7/13/07 we celebrated 1 year NED for stage IV Colorectal Cancer with Met to Liver.Thank you so much for the link

    Patti
  • robinvan
    robinvan Member Posts: 1,012
    Thanks for passing this along Judy. Karen's story is very powerful. Someone should invite her to join this board!!
    I noted that Dr. Deborah Schrag from Sloan-Kettering (in the video) reiterated the "Colon cancer is exceedingly rare in people under 50" line. I hear this in a lot of the colon cancer clips on youtube so have been unwilling to post them because they reinforce a mindset that quite frankly is killing us!!
    Look forward to seeing your question Katie.
    Rob; in Vancouver...
  • LOUSWIFT
    LOUSWIFT Member Posts: 371
    Wow....so you're saying the New York Times actually did a story that is based on reality and got something right. Could it be a coincidence that "Sicko" has just opened. Was I wrong about the Easter Bunny too? Sorry but when the New York Times starts to worry about us then it time to wonder what they're up to.
  • usakat
    usakat Member Posts: 610
    robinvan said:

    Thanks for passing this along Judy. Karen's story is very powerful. Someone should invite her to join this board!!
    I noted that Dr. Deborah Schrag from Sloan-Kettering (in the video) reiterated the "Colon cancer is exceedingly rare in people under 50" line. I hear this in a lot of the colon cancer clips on youtube so have been unwilling to post them because they reinforce a mindset that quite frankly is killing us!!
    Look forward to seeing your question Katie.
    Rob; in Vancouver...

    Hi Rob,

    I agree that the old school mindset is killing us. Considering Dr. Schrag is a leading GI Oncologist, hearing her make a statement that people diagnosed with CRC under age 50 is exceedingly rare is not only maddening, it's wrong. Most current statistics are that 10% of CRC patients are diagnosed under age 50, which I don't believe qualifies statistically as "exceedingly rare." Dr. Schrag also commented that CRC primarily affects people over age 70. I believe that promotes complacency, not awareness, even for those aged 50 and above.

    Infuriating!
  • KPSeattle
    KPSeattle Member Posts: 1
    LOUSWIFT said:

    Wow....so you're saying the New York Times actually did a story that is based on reality and got something right. Could it be a coincidence that "Sicko" has just opened. Was I wrong about the Easter Bunny too? Sorry but when the New York Times starts to worry about us then it time to wonder what they're up to.

    Hi,I am the person in the article...and hadn't known about this site until somebody told me. So, I am happy to join. These groups are important. I belong to Colon Club and the stories and attitudes there were part of the reason I KNEW I had other options besides what I was being told.

    As for the NYT being a response to Sicko or a ploy for attention. That's very far from the truth. The journalist hadn't even seen the movie and we've been working together for about three months. She was extremely honest, concerned and compassionate. Her sister had a bout with cancer. The photographer who flew to Seattle from NY had a father who passed away from cancer.

    I was proud to participate in an article that may motivate people to be aggressive in their treatment options as well as be aware when they suffer some medical mality (for us with Colon Cancer it may be blood in the stool).

    I hope it accomplishes that!

    For me, I look at my daughter and am inspired to get to her next milestone. This weekend it was a trip to a cabin and going swimming! Next week we start swimming lessons!

    Karen
  • usakat
    usakat Member Posts: 610
    KPSeattle said:

    Hi,I am the person in the article...and hadn't known about this site until somebody told me. So, I am happy to join. These groups are important. I belong to Colon Club and the stories and attitudes there were part of the reason I KNEW I had other options besides what I was being told.

    As for the NYT being a response to Sicko or a ploy for attention. That's very far from the truth. The journalist hadn't even seen the movie and we've been working together for about three months. She was extremely honest, concerned and compassionate. Her sister had a bout with cancer. The photographer who flew to Seattle from NY had a father who passed away from cancer.

    I was proud to participate in an article that may motivate people to be aggressive in their treatment options as well as be aware when they suffer some medical mality (for us with Colon Cancer it may be blood in the stool).

    I hope it accomplishes that!

    For me, I look at my daughter and am inspired to get to her next milestone. This weekend it was a trip to a cabin and going swimming! Next week we start swimming lessons!

    Karen

    Hello Karen,

    Welcome to our group! I'm so sorry for what you have been through during a time in your life that should be nothing but beautiful. Since you are here though, THANK YOU, THANK YOU, THANK YOU for telling your story to the NY Times! Personally, I don't care what motivated the Times to feature your story, the fact that it was published gives me hope that we can change that old and outdated mindset that people under 50 rarely get colon cancer. We do get colon cancer and when we do we have to fight the medical misnomer that because we're young we shouldn't be properly screened.

    I admire your bravery and appreciate your advocacy.

    I wish you and yours good health and much happiness.

    Hugs,
    Katie
  • kerry
    kerry Member Posts: 1,313
    KPSeattle said:

    Hi,I am the person in the article...and hadn't known about this site until somebody told me. So, I am happy to join. These groups are important. I belong to Colon Club and the stories and attitudes there were part of the reason I KNEW I had other options besides what I was being told.

    As for the NYT being a response to Sicko or a ploy for attention. That's very far from the truth. The journalist hadn't even seen the movie and we've been working together for about three months. She was extremely honest, concerned and compassionate. Her sister had a bout with cancer. The photographer who flew to Seattle from NY had a father who passed away from cancer.

    I was proud to participate in an article that may motivate people to be aggressive in their treatment options as well as be aware when they suffer some medical mality (for us with Colon Cancer it may be blood in the stool).

    I hope it accomplishes that!

    For me, I look at my daughter and am inspired to get to her next milestone. This weekend it was a trip to a cabin and going swimming! Next week we start swimming lessons!

    Karen

    Welcome Karen! I thank Judy for forwarding the NYTimes article to me.

    The article was great and hopefully an eye opener to all who read it, especially those who have not faced colon cancer and to those doctors who assume that when you have "symptoms" and are under the age of 50, that it must be IBS, hemorroids or something else. Colon Cancer does strike those under the age of 50.

    I have always preached to folks to be aggressive about their treatment options. I've had to change doctors as well and I'm thankful I did.

    You have a lot of inspiration at your house to fight this battle with all you have. I admire you for your determination and attitude. Most of the folks here at this site are fighters.

    Welcome.

    Kerry
  • robinvan
    robinvan Member Posts: 1,012
    KPSeattle said:

    Hi,I am the person in the article...and hadn't known about this site until somebody told me. So, I am happy to join. These groups are important. I belong to Colon Club and the stories and attitudes there were part of the reason I KNEW I had other options besides what I was being told.

    As for the NYT being a response to Sicko or a ploy for attention. That's very far from the truth. The journalist hadn't even seen the movie and we've been working together for about three months. She was extremely honest, concerned and compassionate. Her sister had a bout with cancer. The photographer who flew to Seattle from NY had a father who passed away from cancer.

    I was proud to participate in an article that may motivate people to be aggressive in their treatment options as well as be aware when they suffer some medical mality (for us with Colon Cancer it may be blood in the stool).

    I hope it accomplishes that!

    For me, I look at my daughter and am inspired to get to her next milestone. This weekend it was a trip to a cabin and going swimming! Next week we start swimming lessons!

    Karen

    Welcome Karen,
    I'm just north of you here in Vancouver, BC. I appreciated reading your story and was happy to hear you had the liver resection. I've had one as well, about 2/3, right lobe.
    I hope you have many, many, many more years of enjoying your daughter!!
    Rob; in Vancouver
  • robinvan
    robinvan Member Posts: 1,012
    KPSeattle said:

    Hi,I am the person in the article...and hadn't known about this site until somebody told me. So, I am happy to join. These groups are important. I belong to Colon Club and the stories and attitudes there were part of the reason I KNEW I had other options besides what I was being told.

    As for the NYT being a response to Sicko or a ploy for attention. That's very far from the truth. The journalist hadn't even seen the movie and we've been working together for about three months. She was extremely honest, concerned and compassionate. Her sister had a bout with cancer. The photographer who flew to Seattle from NY had a father who passed away from cancer.

    I was proud to participate in an article that may motivate people to be aggressive in their treatment options as well as be aware when they suffer some medical mality (for us with Colon Cancer it may be blood in the stool).

    I hope it accomplishes that!

    For me, I look at my daughter and am inspired to get to her next milestone. This weekend it was a trip to a cabin and going swimming! Next week we start swimming lessons!

    Karen

    Hi again Karen...
    I noticed in the NYT article that your CT scan showed a spleen lesion. I had one show up on a CT too and it caused considerable worry until a PET Scan showed it to be a "non-malignant process", possibly a cyst. Colon cancer doesn't normally hit the spleen. I hope you get it figured out soon.
    In the meantime... keep on swimming!!
    BTW... there are a lot of other young Mom's on this site. You'll hear from them no doubt.
    Rob
  • christeleb
    christeleb Member Posts: 60
    KPSeattle said:

    Hi,I am the person in the article...and hadn't known about this site until somebody told me. So, I am happy to join. These groups are important. I belong to Colon Club and the stories and attitudes there were part of the reason I KNEW I had other options besides what I was being told.

    As for the NYT being a response to Sicko or a ploy for attention. That's very far from the truth. The journalist hadn't even seen the movie and we've been working together for about three months. She was extremely honest, concerned and compassionate. Her sister had a bout with cancer. The photographer who flew to Seattle from NY had a father who passed away from cancer.

    I was proud to participate in an article that may motivate people to be aggressive in their treatment options as well as be aware when they suffer some medical mality (for us with Colon Cancer it may be blood in the stool).

    I hope it accomplishes that!

    For me, I look at my daughter and am inspired to get to her next milestone. This weekend it was a trip to a cabin and going swimming! Next week we start swimming lessons!

    Karen

    Hi Karen,

    I loved the article about your story and then i saw you here, I was so happy you found this support group.

    I'm 36 and was dx in April 07 with stage IV colon cancer with mets to liver. I had colon/liver resection on May 8th abd today was my 5th chemo.

    I also have a 1 year old. So I can totally relate to your situation. My daughter gives me so much energy, it's just amazing.

    So welcome again and hope to see you soon on this forum.

    Christele
  • tessie01711
    tessie01711 Member Posts: 2
    kerry said:

    Welcome Karen! I thank Judy for forwarding the NYTimes article to me.

    The article was great and hopefully an eye opener to all who read it, especially those who have not faced colon cancer and to those doctors who assume that when you have "symptoms" and are under the age of 50, that it must be IBS, hemorroids or something else. Colon Cancer does strike those under the age of 50.

    I have always preached to folks to be aggressive about their treatment options. I've had to change doctors as well and I'm thankful I did.

    You have a lot of inspiration at your house to fight this battle with all you have. I admire you for your determination and attitude. Most of the folks here at this site are fighters.

    Welcome.

    Kerry

    HI Everyone
    I am new to this site but I just wanted to say that YES colon cancer does strike before the age of 50. I have stage 4 colon cancer and I am 52 years old and the Doc told me that I have prob had this for 5 years now. I often wonder what would of happened If I would of had a colon check at age 45 or so-would my cancer of only been a pulap? Could it of been early enough so I wouldn't have cancer now? I think the age for WOMAN and Men to get their colon checked should be 40 years old.
    Sincerly Tess