My thoughts on the ACS

[Fay A.]

I posted this under the LC In The News section last week, but since the subject of the attitude by the American Cancer Society was broached under General I thought I would post this here:

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Rich,

You want to know why Lung Cancer is viewed in the way it is today? I can tell you why I believe this happened. Back in the early 1990s the American Cancer Society took the very public stance that they were not recommending that Chest X-rays be done on a regular basis to screen for Lung Cancer because it wasn't effective in increasing long term survival rates. And you know what? That was probably true. (Chest X-rays are not as good as CT scans for detecting early stage Lung Cancers).

But.....that isn't all the ACS did. They also adopted the public position that Lung Cancer was an entirely avoidable disease. And that they didn't see the point in expending resources towards a disease that people were bringing upon themselves. It was the American Cancer Society that very publicly took the position that society as a whole should actively condemn the smoker for his/her habit, and that those who have Lung Cancer have it because of Tobacco Smoke exposure. They basically gave "permission" to society to treat those with Lung Cancer like modern day lepers.

They kept up with this attitude on the ACS web site up until a few years ago. It was interesting to me at the time that the ACS web site made it a specific point to tell women diagnosed with cervical cancer that it wasn't their fault for developing cervical cancer, but for woman who developed Lung Cancer it was a completely different story.

I believe that the ACS actually removed the inflammatory language under the Lung Cancer section of their web site right around the time that public health officials finally admitted that the dust from the September 11th, 2001 Terrorist Attacks was much more dangerous than they had admitted previously. (Think about it: A huge population given a single incident, massive exposure to aerosolized concrete, asbestos, metals of all sorts, glass, plastics, and a million other substances, many of which are known carcinogens.)

I was paying close attention to what the American Cancer Society was doing back when it first started what I think of as it's "Anti Lung Cancer Patient Campaign" because my mother had recently died from Lung Cancer. And I was furious that the ACS had profited from my Mother's death, my Aunt's death, my Uncles' deaths, (all from Lung Cancer) by way of donations made in memory of my loved ones' names. I felt they had taken the money under false pretenses.

So, that's my opinion on how those of us with Lung Cancer became Society's "Whipping Post".

Do you know how many times I've read quotes from Physicians (People who really SHOULD know better) that state something along the lines of "...Not all Lung Cancer Patients were smokers, but ALL Smokers will be Lung Cancer Patients...".

Think about it....and let's try to put our collective heads together to come up with ways to direct resources to a cure for all cancers...including ours.

_________________

[Nushka]

Here, here Fay. Good points, well taken. No more relay for life for me. From now on, my money will go toward lung cancer research only. Thanks for the history.

Nina

[Fall54]

Fay,

Before my Brother died he said he wanted no flowers but money to be given for cancer research. I asked him all cancers? he said "No, lung cancer." as I had told him much of what I had read here and how underfunded lung cancer was next to any other type of cancer and why. Yes, he was a smoker and when he was detected he had just got through his 15 months of sobriety and his DR knew it and he told his DR he wanted to quit smoking next. When his DR only a week or so later got Alan's results and found that Alan had stage 4 lung cancer he told Alan outright "this is not the time for you to be thinking of giving up smoking". My thought was he said that so Alan would not begin drinking again and because Alan's cancer was so advanced it didnt see the purpose of putting more stress on him. BTW our whole family loved his DR and he was at Alan's funeral.

Any money that came in went directly to lung cancer. I choose to donate to this site as this was as much to lung cancer research as anything. He would have wanted me to, I just know and when I did I just looked towards the Heavens and smiled.

Lung cancer HAS to be recognised with as much urgency as any other cancer. I have seen through this group and other places that people that have given up smoking 20, 30 and more years ago and people who NEVER smoked have lung cancer and to just think of the firemen who spend their lives saving ours being treated as unfairly when they have lung cancer only because of their choosen profession is adding insult to injury. I agree with everything you wrote Fay... it's time someone got a clue!!

God bless you,

Jane

[CharlieD]

Fay,

I add my Amens to your position on Lung Cancer and how the ACS has handled it. I have approached several volunteer workers locally asking what specific programs or campaigns they are active in that involve Lung Cancer. As you and others have said, the response has been "you must have smoked" to which I always respond of being a non smoker for almost 20 years and if aids patients had abstained from unsafe sex for a like period, billions would be available for ALL types of cancer. I'm contemplating submitting an article to our so called Regional Comprehensive Cancer Center questioning their lack of effort to highlight Lung Cancer in some of their Public Marches and Fund Raising however, it is not a very active chapter and might

be a waste of time. I did transfer some of my earlier treatment to the facility due to closer proximity than the 4 hour drive to Roswell Park but soon found that to be a drastic mistake and have since transferred back to Buffalo. Along the same lines of getting Lung Cancer to the forfront, I have E-mailed and written to Peter Jennings lending our usual support and comfort and asked him diplomaically, I hope, to join us in our efforts by using his hi profile reputation. Haven' seen much out of him lately. I haven't seen anything in particular about his condition or stage or whatever.

Anyway, plan on keeping up prodding them to get us more involved. Gonna sign up for all their walks for Cancer etc and ask for specific signs outlining lung cancer etc. Gotta keep plugging!!

CharlieD

[mamasbabygirl]

I am not usually a boat rocker, but I am sure this may make some of you mad. I have to share my experience with ACS. I started volunteering with them about 2 months ago with their "road to recovery" program. I pick up and drop off patients for their chemo and radiation appointments. All of the folks that I have transported have had lung cancer and the workers at the local ACS office are so very kind and considerate to these people. I do know for sure that this is the only transportation that these patients have. Most of them are elderly and their families live out of town or they have no families at all. The patients are very open about how much this service means to them and how awesome the volunteers have been with them.

It sounds like all of you who have posted have followed the actions of ACS are much more familiar than I about their organization, but I just wanted to share my personal experience. I guess just like anything there are good and bad seeds.

[Hebbie]

Thanks Fay,

I too have never had a positive feeling from ACS. (I think back to a post from someone (maybe Becky G?) way back when that mentioned when she called ACS and asked about support groups, they told her that LC patients didn't live long enough to form a group, told her good luck, and that was that...) Which is why I made certain that all the proceeds from my LC Walk/Benefit went SPECIFICALLY for lung cancer research (via LUNGevity Foundation).

It may be elitist, but I only want money going directly to where it can help US in the lung cancer community -- that is exactly how Breast Cancer has succeeded in making the strides it has over the past decade.....

[ginnyde]

I have a limited amount of money that can be given to charity. I used to give too little $ to too many charities. Then 2 things happened: my good friend got ALS and then my sweetheart got LC.

So now I give what little I have to organizations that either fund research for only these diseases or to this wonderful site that has offered so much hope and support and information to lc survivors.

I believe that we need to be noisy about lc. That is the best way to get attention. I tell everyone about it and I also mention our dear members that never smoked. This is only to help stem this damn stigma about lc not deserving of funding.

[iowagirl]

Last yr on our Relay for Life day ACS told us they were pulling the local office. Closest office is now 100 miles. Local hospital has offered them free rent but they still refuse to re-establish the office. I have collected some funds for them but since Dec. 04 everything is going to lung cancer organizations for research. Some counties in our area no longer have Relays and are having Cancer Survivors'Day instead.

My oldest daughter and I attended the WALC meeting in Orlando last week. The panel (WALC, LCA, Lungevity, CancerCare & Joanies' Cause) have decided to work together to bring Lung Cancer to the attention of the public. They want to work with grassroots organizations to spread awareness and education through out the world. Anyone interested in helping our cause should contact one of these organizations. Let our voices be heard, we did not ask for this disease. We are not invisible! And personally, I don't look good in pink.

[Snowflake]

The first counselor I spoke to after my diagnosis was a counselor at ACS. I talked to her for almost four hours straight....

I had surgery, radiation, etc., and made another appointment with her. She listened, she was a counselor on a cancer ward and she "knew" what I was saying.

That being said, the only other thing I have received from my "registering" with ACS is a monthly newsletter on the meeting times for the Prostate Cancer Survivors Group, the Breast Cancer Survivors Group and the Coping with Grief group for those who have lost loved ones for cancer.

I may need to do some research and send a letter to my local chapter. I may need to send a letter to the local paper when the RFL is in the county about the lack of research toward other cancers that have no champion.

Hmmm...

[Jana_W]

We have a similar problem in Australia. International Lung Cancer Awarenes Month/Day is not recognised by one single Cancer Foundation in our country. It's appalling. I have approached them (at our state level) to ask if they would do something this year, and their answer was a firm "NO". They felt that as they could not offer a solution (such as annual screening etc) they could not run a program. But they went to great pains to tell me about all the money they spend on smoking cessation programs, which is alot. It's great that they do that, but those smoking cessation programs don't do much good for my Mum or those people facing a new diagnosis or the loved ones of that person. I am still trying to find a local organisation to get behind Lung Cancer Awareness Month. And you know what's even worse, I have become a horrible person at time. Kylie Minogue was diagnosed with breast cancer yesterday and my second thought (after feeling very sad for her) was that why couldn't lung cancer get a high profile glamorous superstar to help promote their cause??? Pretty sad, huh?

Jana

xxx

[Geri]

This has struck a chord for me, I didn't realize my distrust of the ACS wasn't mine alone.

Having lost both my parents to cancer (mom, stomach - dad, lung) at a young age I have always supported the local Cancer Society. For years in Canada I collected from my neighborhood during daffodil week, sent yearly donations myself regardless of any campaigns they had going on.

Upon moving to the US 11 years ago I contacted the ACS in Texas to volunteer my services, I left messages, spoke to mumerous people but nobody actually seemed interested in a warm body who was willing to help. I still continued to donate my money however, and assumed that it was being used for the greater good.

When we moved to Vermont I was asked to solicit donations from my neighbors in the form of a mailing to everyone on my street. I did this willingly, feeling very good about my contribution to this very worthy and esteemed organization. I even continued to do this through my tx and recovery.

This turned out to be the tip of the iceberg.....I started to receive requests from every level of the ACS in VT. Let us bear in mind that this state only has 600,000 people in it and I was being asked to donate to the local, county, regional and state offices! I was being asked to support the ACS in VT singlehandedly!!

When I received a call from one office (who knows at which level) to help with their campaign again I mentioned that they had spent a considerable amount of my donations over the years mailing me requests for money and if they wished to get together and make one joint request I would consider sending them a check. I've not heard any more about that but I continue to get the letters and they have sold (or given) my name to other charities........I now get requests from other organizations that also spell my name with a J!!

For the first time in 35 years I didn't make a donation to a cancer society, I was feeling quite guilty about it but having lung cancer and being treated as a leper (just love that analogy - thanks) has made me far more discerning about the different levels of cancer (almost like the Indian caste system). What I didn't realize was that most of the cause for the cancer "tier" system was the ACS attitude in the past.

Thank you Fay for clueing me in on this - my guilt has gone and my research money, such as it is, will be finding a new home in the future.

Geri

[Fay A.]

Lori,

I don't think of you as a boat rocker. You are sharing your personal experiences as a volunteer with the ACS. I think that what you are doing is wonderful. Last year while undergoing 33 radiation treatments to the stump where my right lung had been removed and to the subcarina I had to drive myself to and from the appointments, over an hour each way. I would have LOVED having someone else do the driving for me. But when I called the ACS I was told there wasn't anyone available in my area. Some folks at the radiation center told me that others from my community-who had breast cancer, colon cancer, and prostate cancer-were being transported by the ACS, but I was too exhausted from the radiation treatments to be able to verify if this was true. Sometimes we have to pick our battles.

Also, your relationship with the ACS is as a volunteer, and not as someone who has Lung Cancer. Have you ever wondered why you are being assigned all the Lung Cancer patients to transport? Perhaps you are being selected to take these patients because you will take them? I'm happy to hear that the volunteers at your local ACS are kind to the Lung Cance Patients. But that is not always the case. I have heard more negative than positive over the past 6 years. But I think you have the right idea, Lori. We should volunteer, and change the organization from within. So I'll attend Relay For Life events...and wear my Lung Cancer Shirts...not the ACS Survivor Shirt. But my money goes elsewhere until such time as the American Cancer Society changes it's view on the people who are dealing with the Number One Cancer Killer in the USA.

[Tami]

heather.. that was me that the ACS said that to. I was just diagnosed and having a very difficult time. I called them asking for a support group. they did say that they didn't have one "because LC patients don't usually live that long" Honest to

G-D thats what she said. then she wished me luck and hung up. I was absolutely devastated!! I realize I might have just got a lousy apple in a barrel of good ones but that was enough for me. I do not give my time or money to ACS. I do give both for LC and other related things... Something must be done to change the opinion/mind set of people that ONLY smokers get LC (I never smoked not even one time) and that if they do they ASKED for it. I think the best and first place to start would be the folks at ACS... they need to WAKE UP!

[Connie B]

Well, I have posted regarding ACS on other posts, so I won't repeat myself when it comes to that, but I will share with you a little story.

10 years ago, when I was going through my treatments, my wonderful friends daughter (Tami age 30 years old 10 years ago) (who's hair was down to the middle of her knees) called ACS (In Honor of me) and told them she was planning on getting her hair cut short and she wanted to know who or where she could donate her hair to. Well, the DING BAT at the other end of the ACS phone said, "Why are you calling ACS? We don't want your HAIR, I'm sorry but I can't help you, and she hung up! Well..... I damn near died when Tami called me and told me what happened. At that time, I was a full fledge VOLUNTEER for ACS. Doing Road to Recovery, and Relay for Life committe, Being a Guest Speaker for ACS and running all over God's Country, etc.... Well, I just wanted to do a back flip when Tami told me what ACS said to her. I was soooooo mad!

Well long story short, Tami got a LETTER of Apology in the mail for how she was treated. But, the gal she talked to continued to answer the front desk phone.

And sadly enough the list goes on and on and on. I could wallpaper my house with all the written horror stories I have read & heard about ACS. Not to mention that little issue of them not wanting to be a part of our Lung Cancer Awareness Event at our STATE CAPITAL.

Thank you FAY A for bringing this issue up and for bringing AWARENESS to the fact that ACS is NOT on the side of Lung Cancer Issues or Patients.

[Addie]

Once we get done paying for medical bills that insurance doesn't cover....ANY monies we have available to donate go to local charities! And I've pretty much otherwise cut out ANY charity that uses paid fundraisers anyway....as only a tiny fraction of what is donated actually goes to the cause.

Gilda's Club is, in my opinion, a wonderful support center for cancer patients and their families...and I'm a founding contributor to the NYC flagship Gilda's Club. I try to donate every year, if possible...but have missed a couple of years. All cancer patients are welcome there, but to be honest I don't know if they actually have a support group specifically for l.c. Think I ought to find out...huh?

Our local cancer support center...which I've supported mainly with my $175.00 entry fee into their golf tournament....has NO l.c. group and I'm going to find out why!! I'm not sure I need a group for myself...as I have such wonderful support from a few local friends, my cyberteam and from this fabulous site. But it still irks me that there is no l.c. group for those who might not be as fortunate as I am to have a good support system.

Call me an aging cynic...but I think a good many of our more notable charities do as good a job lining the pockets of their executives and paying their fund raisers....as they do actually HELPING those in need that they front for!

Our local Search and Rescue is volunteer. So are the local firemen. Our town library raises about 40% of it's annual budget thru fund-raisers and a massive book sale. There are lots of local charities to support...without dumping more money on the ACS who, too often, cannot even hire people with a modicum of compassion OR good sense!

[SJAS]

Just wanted to tell you that on our way home from Steve's dr. appt. today I dropped off a packet of information at ACS which included some of the stories here, a 2000 CDC study on Cigarette Attributable Morbidity (which shows LC at the bottom with 1%),and some other articles regarding the stigma and disgraceful underfunding. I had quite a discussion with the director yesterday and she reconfirmed my view that ACS is like a huge, amorphous being that sucks up attention and resources, while at the same time no one seems to be able to get through to whoever is in command. Indeed, several ACS staffers have told me that they have no voice at all in the direction of ACS and feel powerless.

Although it is tempting to simply write them off and redirect our resources elsewhere (mine certainly will not be going to ACS this year!), I know we must be willing to challenge this "sacred cow" of cancer foundations. ACS wields far too much power and influence for us to allow them to continue as they are. The other ACS staffer I talked with sits on an advisory board for NCI (where federal research funding decisions are made) and is viewed as a representative of the lung cancer community. This is the same person who said that focusing on smoking gives the ACS "more bang for its $$$" and that research $$$ aren't directed specifically toward LC because there really aren't any promising prospects. It was patently obvious that they have already written off all those already affected with LC. Please join me in contacting the ACS and expressing your outrage.

[Michael Lewis]

The comments on ACS and the Relay for Life are interesting and timely for me. I will, with my son, Kevin, walk in my first event this Saturday. I was made aware of the event by a fellow survivor who moved here (Seattle) recently from the East coast. I will not mention her name here.

She is an aggressive activist, founder of Women against Lung Cancer, was helpful in starting the first local lung cancer survivors support group. Pretty unbelievable with local cancer organizations like Fred Hutchison, University of WA, etc. that, up to now, there was no support for us "lepers".

I received an email from her last night and she told me she was asked by the organization to speak briefly on behalf of lung cancer, and asked if I would join her and also speak. Little does she know that this is my strong suite!

Aids awareness and breast cancer awareness did not come about any other way than by strong vocal, written and face-to-face campaigns to change perceptions and right wrongs by organizations, employers and the medical profession. We, as sufferers, cannot remain silent. If we do, we have no right to complain!

I just accessed the Relay for Life website, and there are over twenty regional events in my area over the next month or two. I bet I could get to at least ten...(hey I'm retired!) if I could receive a commitment for some microphone time to speak about lung cancer.... I also bet I could also drag along some other survivors, including my friend who got me into all this.

As Fay noted, "sometimes we have to pick our battles"..migod, this is one we have to win. Organizations change slowly and usually from within, but not without pressure from without!

If ACS has screwed it up, let's unscrew it. Hey..all I have to lose is time...and I have plenty of that...

Michael

[daggiesmom]

In reading all the responses about ACS and the lack of funding, respect, etc. I thought of something. We have some really wonderful writers here on the board. (Uncle Doug!) Maybe he could draft a letter to ACS, to CancerCare, to PLWC,to Cure Magazine, etc. describing our problem with underfunding, lack of respect, need for getting the word out. We could somehow electronically sign it and send it to these groups, ASKING DIRECTLY for their IMMEDIATE support. Straight and direct - like "We're tired of being treated like lepers in the Cancer community - more of us are dying than breast, ovarian and other cancers", this is killing more people, yet we are ignored, WHY? Invite them DIRECTLY to visit www.lchelp.com and read our stories, hear our concerns and recommend our website to anyone who needs us. At this year's ASCO conference, there were all kinds of cancer booths, but I don't think there was anything about lung cancer. All these things should be emphasised in the letter. I wish I could write well, but there are many buddies here who can. Maybe, just maybe, that would help?

Joanie

[SJAS]

Great idea Joanie. Steve and I would be the first in line to sign!

[ginnyde]

Me second.

[Patkid]

Leave it to our Spunky girl to come up with a great plan = direct and to the point

Yea, Spunky, we will sign!!!

Love,

Pat and Brian

[marion]

I showed my daughter the above thread for she had a team for the Relay for Life this year. She asked me to get information on the WALC LCA Lungevity Cancer Care and Joanies Cause and she would check into it.

Would anybody out there help me out on this. Really appreciate it. marion