Raving MAAAAAAAD!

[SandyS]

(If this offends anyone, I'm truly sorry - please read to the end and hopefully you'll understand)

When I was going thru all my lung cancer testing, chemo, raditaion, hospitalization and all, I thought I got very good care. Little did I know...

Today, unfortunately, I made a giant social/medical step UP - I'm now being treated in the breast cancer area of the hospital.

What's this? Carpet? OAK lockers instead of metal? Chairs better than my living room for the waiting area?

"Excuse me - can I get you some coffee or tea or water?" Water, please, so I can choke all this down.

Dim lights and soft music while they perform the procedure (breast ultrasound) so I can relax? Huh?

"Oh Honey, are you upset? Would you like us to get one of the counselors?" The what?!?!

"The doctor will be right in to go over the results." You're kidding me! I don't have to wait DAYS for the results? And the doctor WAS "right" in.

"Come in this room and we'll arrange your biopsy and give you all the details. Referral? Oh, don't worry Honey - we'll call your doctor and take care of all that."

All this because now the area they're concerned about is four inches in front of me, instead of four inches inside me!

Now don't get me wrong. I think breast cancer patients SHOULD get this kind of treatment. But I also happen to believe that All cancer patients should get this treatment!

And it's not even just that lung cancer patients are treated so poorly. If I had ovarian cancer or Hodgkins or bone cancer or luekemia, I still would not have access to this level of treatment.

Maybe one day, the medical establishment and donation leaders will realize that once the word "cancer" crosses your doctors lips, we ALL need this level of care.

SandyS

[-Cheryl-]

Sandy,

I am being treated at Sammons Cancer treatment Center at Baylor Hospital. One day on my way to treatment, dazed and porbably in a chemo fog, I went in the opposite diection. I found myelf in the breast cancer diagnostic dept.(very nice too I might add). All of the other cancers are just thrown together? Breast Cancer does receive special treatment. There is not the stigma attached to this disease, as there is with lung cancer.

Cheryl

[Laurie]

Oh my goshhh....Sandys don't scare me like that!....

Boy your post sure was an eye opener.... Boobs are everything out here in plastic surgery CA,... thed probably pick you up in a limo and that would be subsidized by the plastic surgeons office whoed give you a breast ... booty two for one special....

Seriously though .... Cancer is cancer....plain in simply horrific... I think the worst cancer is the one that they can't cure.... well damnit lets get it! All cancers suck all patients should be pampered !!

[Cindy RN]

AMEN!!

[Guest DaveG]

The first cancer support group I went to was a general cancer support group. You guessed it I was the only man there And I was the only one who didn't have breast cancer. Now there were some real tear jerking stories being told, but the bottom line was, WE WILL BEAT THIS DISEASE. Then they got to me and asked what I had. When I told them lung cancer, again, another you guessed it DID YOU SMOKE I got up and walked out. I never went back because I wasn't going to go to a support group that was not going to be very supportive.

I have had other unhappy experiences with women with breast cancer and their "holier than thou" attitude towards other cancers, especially lung cancer. I have, on the other hand, have received some activism advice from several breast cancer survivors and activists and what we are doing is right for where we are right now with activism. We are making noise and it is getting louder and the louder it gets, the more attention we will get. The other advice they gave me, don't take any money away from breast cancer. I don't want their money, I just want to know how they did it. Several of you have it right, it is the American fetish with the breast.

[Connie B]

Well Sandy,

You have cleared the air on one issue for me. Now I know where a lot of the Breast Cancer Monies is going too that they haul in. Being they aren't much closer to a cure then they were 15 to 20 years ago. What a shame!! Things have REALLY GOTTEN OUT OF HAND IN THIS WORLD! $$$$$$$$$$$$$$$$$ I want to see a CURE for cancer, not a new sofa or chair or dimer lights. What do you think?

[Remembering Dave]

Sandy, I am speechless. I ............

David C

[BeckyCW]

Sandy, I'm so sorry. What a blow. This is a powerful story. If and when I write something (fundraising letter, article, etc.) to help with fundraising, I hope you won't mind me contacting you to use this.

I know of a woman (a lovely, sensitive woman) who gave $2 million to furnish a breast cancer clinic at one of our hospitals out here. Sounds about like you described. Artwork on the walls, lots of caring volunteers, the whole bit. I used to go get my mammograms there, even though it was all the way across town, because I knew they also had the best doctors, radiologists, etc. And it was icing on the cake that it was so "posh." I am ashamed to admit that I never once thought about how this would feel to someone with lung cancer at the time, not having known anyone going through it. Now... Now I'd see it all from a different set of glasses.

About the gift the woman made... She had it to give, and she knew a lot of women who'd had breast cancer and had terrible stories about how frightened they were and how badly they'd been treated, so this is what she did. She also gives for research, mind you... she just had this "extra" to give, and she specified the money be used this way, so that's what they did. She still gives for cancer research (not necessarily disease-specific, just the research part of the hospital), so I won't tar and feather her, but after your post, I'm wishing I knew her personally so I could send this to her!!! Why should some patients get the royal treatment and not others? There HAVE to be lots of people who know lung cancer patients, too, and know how scary it is. We're going to find them. And we won't ask for fancy decor, we'll ask for fancy drugs, better chemo, new surgical techniques, etc. When they start saving more lives, THEN we can think about how the place looks.

I'm just so sorry. You have every right to be raving mad. I am too.

BeckyCW

[Donna G]

I had the same treatment last Spring. They saw a calcium spot on a breast and the local clinic sent me to the central clinic for follow up mammogram. I could not believe they had a whole area so large just for mammograms, with baskets of ribbons ( " take one for a friend") baskets of treats, candies, cookies etc. The changing area was a lot different from radiology and the " gowns" were much more stylish than those cotton things most get in xray They were thermal weight and closed with velcro. Waiting areas had fish tanks, etc. They are spending some of that breast money on other things than research. But perhaps that is part of the research , treating people that way. Donna G

[Pam]

This is awful and it makes me so ANGRY!

I absolutely HATE the fact that people ask "did he smoke" when you talk about someone with lung cancer - in fact I went off on someone at work

who did this....

"Oh so it's OK for someone to get cancer because they SMOKED?!?!?!

Then it should be ok for someone to get breast cancer because they have BREASTS - is that what you are saying??????"

Looking back I can see why this person was so shocked, just stared at me and walked away, my friend gave a nervous laugh and changed the subject. I don't care....it will teach stupid people a lesson.

[J.C.]

Sandy,

I would blow a fuse to see a place like that, and I am short fuse

at all times.

In the hospitals in the town where I live. all cancer cases are treated in the same facilities for tests, chemo and radiotherapy and the places are plain no decor or good chairs except for the chemo tretments.

Actually my husband that had lung cancer got much better treatments

than I did with breast cancer and I was so happy about it.

Lets hope that there are not too many places like that, money badly spent.

After I got bc, I was asked to give money for bc and given the example of

Celine Dion and her husband (he had cancer) and they had given $100.000.00 to ten different causes in Canada because he was treated in

the States instead of Canada.

My short fuse got ignited once more and I answered that compared to Celine Dion and her husband revenue (statistics !!!!!) my own revenue

gave me the opportunity to contribute $0.01, to their cause and to

please send me a receipt. they never wrote to me again, I am still wondering why?????????.

After my husband had his treatments we were glad to contribute for more

research for lung cancer.

Do I ever understand you.......

J.C.

[DeanCarl]

Sandy (and others),

I agree wholeheartadly with what you've written. ALL cancer should be treated as the same disease. I've had a friend die from brain cancer and another from bladder cancer. I learned it wasn't any different from what we are going through.

That being said there's something we, as lung cancer patients, survivors and caregivers need to look at. The fact is ours in not the only disease that has had a social stigma attatched to it. From ancient times (Leprosy) right up to today (AIDS, Lung cancer, drug addiction) there have been diseases that are socialy acceptable and those that are not. It wasn't all that long ago that Alcoholism carried that same stigma. Mental illness has only recently started that long road out of the "dark age" mentality.

And in each and every case it fell to the folks fighting the disease itself to affect the change. In every case it took a group of patients, caregivers, understanding doctors and other proffesionals to go out on a limb and say, "No .. the people who have this disease (whatever it was) are NOT bad people. They do NOT "deserve" to have this illness."

So what to do? Maybe we ought to learn from those who've fought this fight before. Talking among ourselves is a good thing. It provides the support and understanding we all need. But, if we are to make a difference in how this disease is precieved, it can't stop there. We need to communicate, in whatever way we can, to others who are ignorant of this illness and the devestation it causes ... and doesn't need to cause.

With those other diseases the change started off slowly. At first it was just educating friends and family. Then THEY educated THEIR friends. And, in many cases, one of those "friends" that got the message had access to a wider means of communication and used it to educate a larger number of people (The Jack Anderson article on Alcoholism, Rock Hudson's battle with AIDS).

So here is what I'm going to do. The next time I tell someone I have lung cancer and they say to me, "Do you smoke?" I'm going to do my best NOT to get angry. I'm going to do my best to try to TEACH that person what this disease is all about. I'm going to try to show that person that no one "deserves" this illness and that, with a simple change in the policies of insurance companies and the medical field the mortality rate for this disease could be cut by over three quarters (paying for CT scans as part of an regular physical).

Maybe that one person will tell other people. Maybe one of those folks will have that access I mentioned earlier. But even if they don't at least one other person will no longer have that prejudice. One other person will view those of us who have this disease with compassion rather than condemnation. And that's a score for the good guys.

Dean

[gail]

My radiation for the breast cancer, my chemo for the breast cancer, was in the same room with all the other cancers. Same hospital, same OR. Never felt my breast cancer was socially acceptable; in fact I refused to discuss it the first time. I was sure I had done something wrong to cause it.

That said, I forever will wonder if my smoking did cause the lung cancer. I had smoked for 10 years, quit for 17. No one could give me an answer, but I knew that my kind of cancer was not always smoking related. But what did it really matter?

I was one who used to ask if people smoked. As an ex-smoker I was concerned about the choices I had made in my past. And as Dean suggested, I do tell people of my own experience--yes, I smoked, yes I had lung cancer, people do get lung cancer without smoking.

From my experience with the breast cancer, I know the Komen Foundation was started by Susan Komen's sister after Susan died at the age of 36. The Linda Creed Foundation here in Phila was started after she died of breast cancer.

We can all become activists in our own way. I am beginning to lean towards the tobacco industry myself--they should be banned for ever.

gail

[Snowflake]

Sandy,

I'm sorry that where you go for treatment there is a vast difference in "cancer" and "breast cancer" decor. In the hospital I go to, radiation was the same for everyone - me with lung cancer and the two appointments before and after me (both breast cancer survivors); my oncologist treats all forms of cancer, same room for chemo; private doctor for surgery, off-site office; mammogram was at a women's health clinic - they treat pregnant women and squeeze boobs...not much difference in the offices for urology, etc.

Unlike some people on the board, I do NOT believe the tobacco companies owe anyone a damn thing. No one FORCED anyone on here to smoke, and I remember the warnings on the labels of cigarettes from the time I learned to read! The argument of additives making cigarettes more addictive doesn't work, either - again, NO ONE forced anyone to put that first cigarette in their mouth and smoke it. It is time for people to take responsibility for their own actions, to face up to the fact that smoking was a CHOICE made in their life and NOT the ONLY reason they may or may not have lung cancer. As the kicker, I am NOT convinced that smoking is the only cause of lung cancer, NOR do I believe that the past smokers and current smokers who have this disease did anything to promote getting this cancer. I have this cancer - and I've never smoked. That's proof to me that just because a person smoked is NOT the only reason they may have this disease (and to be honest, I'm getting damn sick and tired of all the whining of cigarette manufacturers being responsible for it...so shoot me!)

My thoughts are that emphasis should be put on the fact that smoking is not the ONLY cause of lung cancer and that non-smokers get it, too. People should be aware that ANYONE can be diagnosed with lung cancer and no one can pinpoint the "why". We don't need to place blame, we need to find a cure. NO ONE deserves this disease, no one's mother or father, no one's son or daughter, sister or brother, smoker or non-smoker, poor man or rich man, NO ONE. It's time to get past the whining and take some action.

Oh my, pardon my vent...obviously, I have some issue with lung cancer stigma, as well!

So, I'm expecting all those PMs and posts telling me I'm out of line, so I won't be surprised...

Becky

[gail]

I do not blame the tobacco company for my lung cancer, but I have yet to come up with a good reason why cigarettes are here and legally sold. Sometimes I feel there is more anger here with the breast cancer coalitions then the tobacco company.

I am still looking for one positive use of tobacco. That's when I get angry. I need a prescription for extra flouride based toothpaste, and any 18 year old can walk in and buy cigarettes. I bought the whole "if I smoke I won't eat and I'll look like the models in the ads" .

Breast cancer was no walk in the park--the radiation burned my skin and the chemo made me nauseous. I have scars everywhere, and my sister thinks I should get them made into tatoos. 211,000 women were diagnosed last year. The greatest risk factor for breast cancer is being female. Smoking is a risk factor, and I knew it at 18, but who worried at 18?

My breast surgeon and onc have made it clear that reoccurence with breast cancer can come at any time--2,4,7,10 years down the line, but that time does help with the lung cancer.

That said, the lung cancer did and does scare me more than the breast cancer. The breast cancer was cut off, the lung cancer was inside me.

Either can do me in though.

Hope people don't get mad at me now. My Philadelphia Eagles are not in the Super Bowl for the 3rd year in a row, and I am going through football withdrawal.

gail

[Debi]

I haven't been posting too much lately but now you guys have brought me out!

First off, I want to say Sandy, I understand your point and where you were going with your post..this isn't about that at all! I want to add my 2 cents to the thread here and to be perfectly honest, I pretty much agree with everyone to a degree.

Dean, you know that I know where you are coming from with the alcoholism thing. I have said in chat before that all I want in life is to have a "socially acceptable" disease..instead I have alcoholism and lung cancer... what the hell?? I remember that I never kept my alcoholism a secret, I felt obligated to get the message out there that anyone can suffer from alcoholism. To this day, I do not hide that. However, I am not so upfront with my lung cancer. It doesn't have so much to do with any stigma...I just don't want to see the pity in people's faces...immediately they look at you as if you are on death's door. Hell, before I had lung cancer, I would have looked at people the same way. And yes, I probably would have asked someone if they smoked since smoking is a cause of lung cancer. Sometimes I think when people ask me if I smoked, that first onset of irritation that I feel is actually masking my guilt for smoking as long as I did. I knew it could kill me and I took the risk. How stupid of me..addiction or not!

And about the breast cancer thing.. a woman on my "team" was diagnosed last year..she had chemo for 6 months followed by radiation. I don't envy her one minute of any of it..comfortable gown or not. Her life spun out of control the same as mine did. And breast cancer has its own pyschological demons...more power to these people if they have more money. Bottom line is, there still is no cure.

[teresag]

It is inequitable, no doubt. Health care economics explain many of the differences yoiu observed, Sandy. Breast cancer = dollars for hospitals, and the posh decor and red carpet treatment are there to attract people to THEIR breast cancer hospital and not the one across town. Fancy breast cancer centers are a hospital marketing trend. There is money to be made in breast cancer, partly because younger people get it (Medicare is not the main insurer so reimbursement is better), and partly because it takes place in outpatient areas, primarily, which are more profitable for hospitals than inpatient areas. Lung cancer, sadly, is less profitable because the people with it are older, sicker, and more likely to be hospitalized.

DaveG, I was the one who posited that the American fondness for the breast is partly driving this inequity. I also believe the likelihood of cure makes breast cancer a MUCH more optimistic (and thus marketable) disease. I wish economics weren't making the decisions, of course, but it is. Hospitals are in business, just like the corner drugstore. If we didn't live in the only modern nation without national health insurance, it might be different, but for now it's about competition, market share, and profit margins. Call me cynical if you wish, but I know how hospital administrators think.

[Guest]

With regard to tabacco companies, I think smoking is right up there with herion, crystal meth etc.... only differce is you can still live normal life..... I saw my Mom get hypnotized, pacthes, nicotine gums .... There aren't enough words to tell you.... how many times she tried to quit!! I will not like a herion pusher, crystal pusher, tabbacco usher/manufacturer...My Mom started smoking at 16 yrs old.

The absolute worst thing I have had someone say to me was that they don't want there "tax" dollars spent on caring for people who brought this cancer upon themselves ....I just so happened to be coming home from taking care of my Mom during one of the worst chemo's... I said well thats a shame... he said what? I said your pretty overweight.... guess your addicted to eating fatty foods? And my tax dollars will have to pay for overweight jackasses cholesteral screening/heartattacke moved.......Huh?

[ginnyde]

Ok, here's my three cents worth.

Smoking is not good for you. Alcohol is mostly not good for you. Fatty foods are not good for you. Speeding is not good for you. Too much sugar is not good for you. The list goes on and on. We all make mistakes in our life styles, some bigger than others. But here we are.

We can't go back (although wouldn't that be nice). We have to go forward. Let us, as a group, go forward. Forward, to educate people about Lung Cancer, forward to annoy everybody to fund research to find a cure, forward to help our fellow LC friends.

Blame or envy has no place here. Support, awareness and advocacy - that is our mantra.

Ginny

[Debaroo]

I must echo Cindy in this, as you all have said what I was thinking when I read Sandys post, man Sandy-your reaction was right on target-and to you all I say

"AMEN!!!!!!!!"

Deb

[gail]

One more thing and then I will shut up, I promise.

No, two things

I hope I didn't offend anyone.

I was rereading the posts, and thought about the plastic surgeons. The biggest surprise for me with the mastectomy and reconstruction was the plastic surgery. Why anyone would elective choose breast surgery is way beyond me. I expected something "Pretty" (isn't that what they do?) and got more scars and uneveness to boot!

gail

[OhioKat]

When I say "I have lung cancer" & they say "Did you smoke?"

I ask them back "Does that really matter?"

and just for the record, yes I did but it shouldn't matter.

I used to have sex too, does that mean I should have HIV?

[Snowflake]

One point where cancer is better than HIV - the ignorance is in how you GOT it, not in how it's spread. There aren't any nurses afraid to hold your hand during chemo for fear they'll pick up cancer, ya know? Family members don't avoid hugs, friends don't stop inviting you over for dinner...

The "used to have sex/HIV" thing got me thinking....I used to have unprotected sex and was lucky.... Didn't smoke and ended up with lung cancer - not so lucky.

...and I STILL watch for that random beer truck when crossing the street!

Becky

[Marie]

It doesn't upset me when people ask if I smoked. I have found that many times they're asking out of fear. Either they smoke, did smoke or someone they care about smokes. I haven't smoked in 7 years but I still have the desire and the cravings. I like to think that if I could go back. I wouldn't smoke but I'm not sure that is true. It is very addictive and even now I can't say for sure that I won't someday light up again. I sure hope not. But I never beat myself up about it. Other life decisions, yea, I've made some very stupid and life altering choices. Oh Well. Stuff happens.