Lung Cancer In The Entertainment News Today - 1254512

That's very sad. My mom and I were great fans of Rhoda and Mary back in the day.
I completely understand your being upset.
However, I read the NPR blog (not that npr is infallible) about the news and it states that Ms. Harper reported having brain cancer. To those of us, both loved ones and those with lung cancer who want to know what's going on it's difficult to imagine someone with lung cancer not knowing the difference. But I can see my husband not knowing the difference and not caring. One of my regrets is I think I may have given too much info to my husband at one point before he could fend for himself and before I knew what a wonderful thing denial is.

At any rate very sad to know.
and it really makes me want to make this a learning opportunity to a bunch of people who probably don't care.

Love you Laya!
Janine

Very sad news indeed as we all know what cancer is capapble of. Laya, it bothers Jim the same way to read "sloppy reporting". And Janine, you are so right that denial is a "wonderful thing"! I'm sure some of that helped me to get through Mark's illness. I do like to take any opportunity I find to educate people now though about the differences of seperate cancers versus spread.

Take care everyone,
Lisa

I just read the link Laya posted. That makes me so annoyed its down right wrong. Not just confusing like my previous sentence.

I'm impressed with Ms Harpers wish to bring her illness public so to educate the public. That's a brave move.

I read the same thing this morning and thought about tweeting about it with a clarification. I suspect it's sloppy reporting, as it's typical for people to think that a lung cancer metastatic to bone is "bone cancer", etc. I wouldn't presume that it's an attempt to minimize the diagnosis of lung cancer. I don't know if we should be reassured that it's just journalistic ignorance, but I suspect that's the genesis for the inaccuracy of reporting.

-Dr. West

Thanks Laya! I was racing to note the same thing on this thread. As an aside, I spoke with her also and she is very nice, easy to talk to. And in my mind, the more we talk about these things - as hard as they are - the more recognition they get, and the closer we get to funding research, as well as helping with well-deserved recognition for this wonderful website. So if you are comfortable with giving your story, please give her a call.

OK, I've just become a big fan of Inside Edition. Not because they will probably note Grace in the piece (though as Denise said good for Grace) but because they want to be accurate.

It's time to get lung cancer out of the closet. I'm going to look for a post or maybe it was a comment on a blog post. It was a conversation about how many people don't want it be known that they have lung cancer because of the stigmatism that goes along with. So instead of saying so and so has lung cancer they say so and so has cancer. It's been shown that this doesn't happen with other cancers. Come on, we know there are lots of things people do everyday that can cause death so why should it be that smoking, one of the most addictive habits known, and lung cancer get swept under the rug. Not to mention all of those who never smoked.

Does anyone know the comments I'm talking about? It included a resource with a list of examples, famous people written up about their cancer with the word lung left out.
I think it's a good example of why Ms Harper's wish to be outspoken about her condition is so important.

OK, that was easy enough I answered my own question. Dr. West wrote a blog post on the subject when Paul Newman Died. The list is in the comment section.
http://cancergrace.org/lung/2008/10/02/paul-newman-2/

After I had read Laya's post about this story, I was watching NBC Nightly News with MY Brian Williams (I watch him every night right before PBS News Hour). They reported that Valerie Harper said she had a very rare brain cancer, and that she had battled lung cancer in 2009. During the report they just couldn't resist the opportunity to show a photo of her with a cigarette in her mouth. I was crushed. I won't fault them so much for reporting the story the way it was given to them, but showing that photo was a cheap shot, and that kind of thing really only serves to undermine the efforts of the lung cancer community to raise awareness and funding for research.

http://www.nbcnews.com/video/nightly-news/51074361/#51074361

I've read the speculation above about why they may have chosen to report it this way, and thought that maybe Ms. Harper or her publicists prefer not to deal with the fallout from admitting to lung cancer. If that is the case, what a shame that is. With her celebrity, she has the opportunity to shine a light on lung cancer and could shout out the statistics that people need to hear in order to understand the magnitude of the need for funding and research. Not to mention her opportunity to honor the staggering number of people who get struck down by this devastating disease.

I'm so happy to hear that Ms. Whitney wants to accurately report the story. I hope she is able to do so in a way that will make the need for heightened awareness the focus. And I also hope that Dr. West and GRACE are represented with the dignity they deserve.

With much love and respect,
Debra

I found this article by People, further explaining Ms. Harper's disease...

After successfully battling lung cancer in 2009, Valerie Harper thought she had the disease beat.

But as the television icon, 73, reveals in this week's PEOPLE, she is now fighting cancer again – and this time it is an even more formidable foe.

On Jan. 15 she received a diagnosis of leptomeningeal carcinomatosis, a rare condition that occurs when cancer cells spread into the fluid-filled membrane – known as the meninges – surrounding the brain.

The incurable disease, which accounts for less than 2% of all cancers, "comes on quickly and progresses quickly," says Harper's oncologist, Dr. Ronald Natale, director of the Lung Cancer Research Program at Cedars-Sinai Medical Center in Los Angeles. It can prove fatal in as few as three months.

"This is a really complicated condition," says Dr. Jeremy Rudnick, Harper's neuro-oncologist. "The spinal fluid is a collection of fluid that's being circulated [through the brain] kind of like a sink. The fluid itself is growing cancer cells so they are multiplying in there. Those cells start to coat the brain."

Because of the difficulty of getting chemotherapy drugs into the meninges, there are "limitations" in treating the condition, says Dr. Rudnick.

"You have a train that's moving 100 miles per hour, and what we're doing is slowing down the train to five or 10 miles per hour [using chemotherapy drugs]," says Dr. Rudnick.

The first symptoms of the disease often include seizures, blurry vision and severe headaches, along with "a belt-like sensation" across the midsection, says Dr. Rudnick. Harper first started experiencing the strange sensation last August, but an initial round of tests did not detect the condition.

After experiencing numbness in her jaw during rehearsals for her one-woman show Looped on Jan. 11, Harper was hospitalized for more tests.

A third spinal tap finally revealed cancer cells had spread into her spinal fluid.

Although Harper is undergoing chemotherapy to try and slow the disease's progress, she is realistic about her odds. Ultimately, "the total burden of cancer gets to such a high volume that the body sort of begins to shut down," says Dr. Natale.

By sharing her diagnosis, Harper hopes to shed light on the rare condition.

Receiving the news initially, "I was stunned," she says. "And in the next minute I thought, 'This could draw more attention to cancer research.' I think there's an opportunity to help people."

They just don't want to call this lung cancer.I think that's a shame.

Debra

Wishing her the Best! Hopefully the Chemo can successfully extend her life with hopes of not to much loss of quality of Life! God Bless Her!

An update to Laya's post:

On Thursday evening I called Tori Whitney and left a message telling her that I would be willing to talk to her about my wife's leptomeningeal carcinomatosis (LC), but she must have already gathered whatever information she was seeking since I did not receive a call back.

I didn't see the broadcast program, but on their website Inside Edition posted the story of a breast cancer patient who had developed LC a year ago. On the plus side, the article states that "Valerie Harper's brain cancer is believed to have resulted from her lung cancer"; on the down side they persist in calling it "brain cancer". Also, for further information about the disease they provide a link to the Chris Elliott Fund, an organization which seeks funds for research on Glioblastoma Brain Tumors, certainly a worthy cause but not the lung cancer which afflicts Valerie Harper and desperately needs research funding. You can read the story here: http://www.insideedition.com/headlines/5958-brain-cancer-survivor-offer…

JimC
Forum moderator

Yes, they even told Laya they'd be dispatching a film crew to speak with her at her office in SoCal...then didn't show up.

I'm not sure if their incorrect terminology and links are due to willful ignorance or just misinformation (despite attempted outreach and education by you, me, Laya, Denise, and potentially others), but neither is great.

I guess the take home point is that you can't look to mainstream entertainment media for reliable health care information.

-Dr. West

I guess that accurate reporting is not high on the list of purpose in the journalistic industry today. What they wanted most is the commercial success of viewership. Selling hope is the best way and the search was to put forward a survivor to share a success story. Afterall we live in a world that prizes hope, regardless of false or realistic.
NJ

Sadly, the days of accurate and intelligent reporting seems to have gone the way of the newspaper. Entertainment reporting, while largely fluff, doesn't seem to care about accuracy or intelligence - in the end, it's really more tabloid-oriented. "Brain cancer" is inaccurate but "dramatic" - even if we know that LC is much more dramatic and complex than "brain cancer". But one can see the reporter's eyes glaze over at the attempts to explain the difference. Complexity is often the enemy of entertainment - and as NJ says, hope is what sells, realistic or not.

My best friend's husband is a cameraman on Inside Edition. I might speak to him about it, and while he would agree wholeheartedly at the inaccuracy and the need for correction, he'll probably say it's part of the whole dumbing down process that entertainment TV specializes in and they've probably moved on to another celebrity's health crisis...

Jazz

I think we should bombard the media with comments and requests for corrections. But that's just me.
Debra

I did hear a doctor say on CNN yesterday give a pretty lengthy and apparently accurate explanation of her "brain cancer". He said that it was leptomeningeal, affected the lining of her brain, and was caused by a metastisis of the cancer cells from her lung cancer. This doctor was introduced as a friend of hers. I didn't catch his name.

follansbee

Well there's this:
http://www.foxnews.com/health/2013/03/06/leptomeningeal-carcinomatosis-…

She's on The Doctors at 2pm so I'm recording the episode in case I miss it. I'll report back. I note that none of these articles seem to allow comments, but as Debra said, we should bomb the ones that do!

Jazz

here is the CNN piece -
http://www.cnn.com/video/#/video/bestoftv/2013/03/11/early-cohen-vharpe…

Denise

Am watching The Doctors. Valerie's neuro-Onc and the director of thoracic Onc from cedars Sinai are on. More thorough explanation with scans - and definitely clear that it's a lung cancer recurrence. Getting through the ads is a drag, try to see it online-

Jazz

I've been writing comments since Laya first posted the story. If you don't see a place to comment, scroll down to the "contact us" link at the bottom of most web sites. You can usually follow a trail to some area that will allow you to vent via email.

VIVA LA.... Oops. Never mind.
Debra