Judge for yourself...

[Tom]

I saw this article online today, and I was not sure how I felt about some of the conclusions drawn, but take a look at it and judge for yourself. The tone of some of the doctors' conclusions left me a little uneasy. I fear that such talk might cause doctors to shift towards stopping treatment way before the patient feels ready to concede. Maybe I am wrong.

http://www.foxnews.com/story/0,2933,198036,00.html

[Sheila]

Tom
I am shocked....I feel it should be a personal choice as to whether a person wishes to prolong their life even to the end with chemo.....what is the value of one day and how can they put a price on it?
I respect those who don't want any more treatment, but for those who do, no matter how hopeless, they have that right. Its always about money with insurance and the government....how sad that they are judging the value of a persons life based on illness.

[karenann]

I agree!

Karen

[Susan2]

Quote from the article: "However, another study presented at the cancer meeting on Friday showed the opposite problem: people not getting enough care.

A survey of nearly 700 primary care doctors in Wisconsin found that only 11 percent would refer a patient with advanced lung cancer to a cancer specialist and only 25 percent would refer a woman with advanced breast cancer."

__________________________________

Only 25% of the primary care physicians in the survey would refer a woman with advanced breast cancer to a cancer specialist????
That is a terrifying statistic, if accurate.

[Sherryg683]

I just wonder if it was their mother, or wife, or daughter who was sick and begging for treatment that would extend their life, ....would they feel the same way. I dout it very seriously. ..sherryg683

[mekasan]

I am so disturbed by this article that I can barely articulate it in words! It sounds like once again money is the problem. Are insurance companies pressuring to reduce treatment for those reaching the end. We all know it is not the end until it actually is. How dare someone else decide that the chance of pulling through is so slim that they will not pay for treatment. What is the basis for stopping treatment? Statistics? Well I had something like less than .01 percent chance of getting this disease at 29 and I sure as hell will not let someone say that my chance of pulling out is too low to persue treatment. If it was unlikely that I could get cancer and I did, I can imagine that for some it may seem unlikely that they will pull through and they will. That will never happen if treatment stops and everyone quits JUST TO GIVE THE PALLITIVE CARE PEOPLE MORE TIME TO DO THERE JOB!


-shannon

[RhondaH]

how do the docs KNOW when enough is truly enough (look at all the women on the board that have been "brought" back, though the article did refer to patients NOT having had Herceptin), but then I think back to a discussion at my last Herceptin treatment 2 weeks ago with the Stage IV lady I get Herceptin with and our onc nurse. There was a young guy (early 30's) that was married w/ 2 young children (3 & 5 approx.) and he had advanced melanoma. He had been getting chemo for 2 years. Our onc nurse said that he had passed away the Tues prior. Apparently, the week before he was to come and get chemo (he had been getting worse) and didn't show up (his wife said he was ANGRY when they wouldn't let him get chemo as he was so bad). He refused hospice (for those of you who have never been in an end of life caring position, this is a HUGE stress on the person caring for the sick one (for those of you that have you have shoulders of steel) ESPECIALLY when you are caring for others, ie young ones, AND trying to keep food on the table) leaving his wife to care for him to the end (pain mgt, feeding, changing etc). His wife told our onc nurse that his death was painful and violent (rather than peaceful) to the end because he NEVER would accept his dying. I plan on fighting, but at what point do you accept the inevitable?

[al from Canada]

First, I would like to say that I'm really glad I don't live in Wisconsin!!!
Second, Linda was brought back from the brink and lived with a fantastic Q of A for more than 2 years! Unfortunately, the cost / benefit analysis is weighing heavily on many institutions, BUT..... when it comes to human life; nothing should be off the table and who are they to assess our value in monitary terms? Guys, (and ladies); we should be writing letters to these idiots!!

Sorry for being a bit edgy but....

Al

[Bev]

Are the doctors reporting this or are the reporters reporting this? 2 weeks! After years, what difference does 2 weeks make? Cancer treatment cost a fortune but end of life, no matter the cause is not cheap either. Should we waste our time with this sound bite? BB

[dogladybarks]

I've seen both sides of this. I've seen people who were terminal and suffering, who only wanted to pass on with dignity. They had had enough of the treatments, tubes in their body, and generally no quality..they were tired of fighting, but their doctors kept insisting on more and more treatments.

I too, feel it is a very personal decision, and I also feel that it is cruel to give someone false hope, and this HAS happened, so someone can make money. IMHO, cancer is big business...everything is about money today, and there's no reason for treatments/meds to be so outrageously high, that those who have no insurance, couldn't possibly afford the treatments. I don't want to hear about how there is "help" out there...been there, done that, it's not true. I have heard several people who have cancer refuse further treatment, because they have become financially ruined, and want something left for their children, etc., and have no desire to become a "guinea pig" for the greedy.

HONESTY about someone's real condition is what is needed, and personally, I don't think that HONESTY is always a priority. Yes it is true, nobody can predict how much longer someone will live..that's impossible, but a little bit of honesty would go a long way for cancer patients, so they are not robbed of whatever quality days they could have had, while continuing treatments that will be futile.

HONESTY is what will give a cancer patient the tools to make a decision either way.

Just my two cents.

Sue

[aquinis2000]

With a long long line of cancer in my family, i am a person who can speak with some experience on docs giving false hope. 7 aunts and uncles, one cousin and my father all died from the ravages of chemo therapy. not thier cancer. I have wheeled my father into the onc office, him to weak to eat, sit, stand or walk and seen the onc just pat him on the head and pump him full of more chemo. we all being in denial of his impending death, holding on to every straw we could, blindly watched as they poisened him. oh, to be able to do it again!!!!! what guilt and shame i have for encouraging him to continue in this torture. the pharmacutical companies are rich beyound our wildest imagination. no closer to a cure. just different methods and names for the torture they pass out. I am a stage 4 bc patient. I quit chemo in january, quit herceptin in april and living, living , living. my tumor markers were <8 last month and my liver enzymes are just bordering at normal. But i have lived. no doctor, no nausea, vomiting, neuopathy, depression, bone aches, pain,lethargy, shortness of breath, guilt for not being able to get up and contribute to the household. my libido has returned and i actually can make love to my hero, my husband.That is quality of life.I'm not going to leave my family with hundreds of thousands of dollars of medical bills, to these docs and phamacutical companies. read the latest reports on this site. they talk about, investors and profit and "getting into the market. I'm not going to be part of that. I will decide my path. No God will decide my path. My very last breath was recorded before I was born.When there is so much greed and profit to be made on desperate scared people I can't believe that more people don't just see the ridiculous vulnerability of cancer patients. Honesty is missing from diagnosis. What do i care if herceptin gives me 7 months instead of 4 months , if i'm sick as a dog during those 7 months. I would rather live out the 4 months stong and alive. which i have been doing. The recent list of women whio have passed away only strenghten my decision. These ladies tried every possible drug available, and the end is still the end. There has never been a study done on women with breast cancer, who take no treatment. never. How does anyone know the outcome if nobody has tried it. Of course the drug companies don't want to do a study of that. This is the path i have chosen, and my family....having seen the outcome of so many in the family whoi tried everything, stand behind me 100%. I believe the more i talk to people who have had many die from cancer, will agree that false hope and unrealistic expectations is somehting we welcome when one of our loved ones is diagnosed, beause we don't wnat to lose them. but after they die, one after another, we see that the time could have been spent with laughter and love and living, insted of sickness, weakness and fear.I think all on this board are brave, loving and warriors. I love you all and pray for everyone. especially maryann , who is going through this battle right now. I love to read your research , but in the end, it seems as though that the very few of you that have become survivors longterm are vastly outweighed by those whose end was delayed on the backs of the drug companies.

[lu ann]

Dear Aquinis, I commend you for doing what you think is best. I agree that our days are numbered before we are born. I have been one of the lucky ones who have been able to live with stable disease without the agony of major side effects from treatment. If it gets to the point where I have more bad days then good, I think I will consider ending treatment. I'll only know what I will do when the time comes. God Bless You.

Love, Lu Ann

[al from Canada]

Great comment but I am going to challenge it. How do we know that the good / bad ratio is permanent or temporary? And what I get from this is it's all about the patient...which is only 1/2 the story. What about the loved ones?? I would give anything, maybe my life, to spend another 2 hours with Linda...and I know she would do the same, despite any Q of A concerns. Let's not leave out the human (relationship) factor here. I know it's all about the cancer but....when the mom gets cancer; the whole family has cancer.

Al

[Sherryg683]

I am Stage IV, currently in remission..Thank the Lord. I am young, 44 with a young daughter who's 8. I will pump gasoline in my veins, if it means me being around to see her grown up. I can't stand to think of the pain that my children and husband would feel if i weren't around. My little girl needs her mother as does my son. This is my main concerns right now and I will fight like hell to be here. Now if I were older and my children grown and with a life of their own, my take may be different, I doubt it though. As far as leaving my family with hundreds of thousands of medical bill..I'm lucky I have good insurance that takes care of that.. I pray that those medical companies keep on working and coming up with new drugs, one day they may come up with the one to cure cancer, that would be priceless...sherryg683

[CPA]

When I was younger (early-mid 20s) I worked part-time for a local ambulance service. Some of the most horrific scenes I witnessed were not the auto accidents, gunshots or even suicides, but the end of life struggles of several elderly people.

One that will always stick in my mind was a 93 year old woman (I can still remember her age and her exact address almost 15 years later).

This woman was suffering from many illnesses. She had a history of multiple strokes, dimentia and several recurrent infections. The last time I personally saw this woman was when we transported her to the emergency room to re-insert her feeding tube.

Instead of allowing her to die peacefully, the family insisted on "heroic" measures to keep her alive.

She was given a tracheostomy (breathing tube through her neck);
a naso-gastric feeding tube (a plastic tube stuck through her nose into her stomach so food could be pumped in with a syringe); and
an ostomy port/bag for excretion of waste.

This woman was SUFFERING and being "treated" with painful procedures with no hope of ever recovering. I doubt she even knew what was going on around her. When she was awake, she mostly had a frightened look in her eyes. She could not talk.

I will NEVER allow my parents or a loved one (or myself) to go through this type of TORTURE when it is obviously futile.

I saw enough futility in the several years worked to completely change my point of view on death. Although I still believe in figting as hard as possible to hold on to life, I realize that the fight eventually has to end. Sometimes, the end of the fight should not be when the heart stops beating.

On the opposite extreme, I was called for a patient in "cardiac arrest" one night. When we arrived on the scene, we found a frail man sitting in his chair in front of the television. He had passed away in his sleep - at home - with his family.

There were pictures of his children on the wall around him and his wife was by his side. I almost did not recognize him in a few of the pictures. He was a robust man in the photos - even a little on the heavy side.

He was a cancer patient and had lost nearly 100 lbs during his fight. Our protocols allowed us to sit with the family until the funeral home arrived. We helped them make some phone calls to relatives and talked with them about the deceased man. He loved to fish and went to the lake up to the time he was too weak to drive & walk.

I have chosen how I want to die. When the time comes, I want to be with my family in a peaceful setting. I do not want to be stuck with tubes, frightened and alone. I want support to be there for my family and I want to be remembered for how I lived my life.

[al from Canada]

Agree 100%, after we knew what was going-on with Linda, we withdrew support but kept her on dex to keep brain swelling in check. I draw a distinction between a viable tx plan and dying. Great comments.

Al

[SaraD]

is fox news. i hate to sound like a politician here, but i don't think fox news represents the majority of opinion in america.

i agree with all the comments above. it all comes down to respecting the individual patient, giving him or her honest facts and allowing him or her to be a partner in decision-making.

chemotherapy is big business, unfortunately... life-prolonging in some, horror-prolonging in others. every cancer is different. every person is different. i might want everything possible done now, but a few years from now i might be tired of suffering and not want anything more.

what i do want is a doctor who will be hopeful but honest. i don't want false hope, but i don't want overt negativity either. there has to be a balance.

we all want to live and none of us want to suffer unnecessarily. it takes a doctor who is compassionate and hopeful and honest about the limits of their knowledge to help us each come to decisions along the way.

i have to think it must be hard for the doctors who care about us. i have a great doctor who really cares deeply about me, and i know it will be hard for her if i relapse! she is incredible, and it's because she has been through a lot of personal illness herself.

i hope you all can find wonderful doctors to help you along the way! fondly, sara