Good Article: When to Stop Treatment?

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WARNING: The following contains discussion about some sensitive

issues (cancer death). If you do not wish to read material of this

nature, please stop now and delete this e-mail!

Hi All,

I saw the following article in the paper yesterday...it relates to

questions and issues many of us (advanced stage IVs) have here, so I

thought I'd post the link & give a few rambling thoughts.

http://tinyurl.com/zhbu

The article is the story of a 5 year old girl and her parents

difficult struggle with her brain cancer diagnosis. Brain cancer has

a " worse " prognosis than colon, with a typically shorter survival

time (please keep that in mind while reading!). Nonetheless, the

issues raised in this article are really common to ALL " incurable "

cancer patients, which is what makes it relevant to us on this Board.

Having traveled many of the same paths as Molly's parents, I

immediately recognized many of the things they talked about. I too

explored " Sun Soup " (never ordered it though...too expensive!)...and

herbs...and clinical trials....

There are almost ALWAYS " further options " in the form of clinical

trials...or " alternative medicine " ....or something...which can be

done for MOST patients, regardless of how many chemos or therapies

they have gone through and progressed on. The question is always a

cost/benefit one: Given the uncertain nature of the potential

benefit, is the COST (which may be financial, or in terms of

pain/suffering from side effects, or time lost from being with

family, or a dozen other things) worth the LIKELY benefit, even

assuming the treatment " works " ? For example, if the treatment added

an extra month or two to survival time, is it worth it? How likely

is the treatment to add survival time? If only a 20% chance of

clinical benefit, is that " worth it " ?, etc. Sometimes you can

discuss this with the oncologist, and get significant input regarding

the potential benefit. Always ask for SPECIFICS such as I have

mentioned here...HOW MUCH survival time do you think this treatment

could give...what PERCENTAGE of patients might be expected to have

tumor shrinkage....what PERCENTAGE of patients might be expected to

have " severe " side effects, etc. Oftentimes I guess they can't

answer these things, but sometimes will have definite opinions and it

is surely worth the asking.

There is, particularly within the colon cancer community, a pretty

strong feeling/belief that most " alt therapies " are a waste of time,

especially for advanced patients (i.e. rapidly growing disease. A

particular Alt med would have its BEST chance for " working " , assuming

it does " work " , in NED patients. Most honest alt med practitioners

will admit that). Some very good points were made on this topic by

Arlene Harder, one of the founders of the Wellness Community (cancer

support group)

http://www.learningplaceonline.com/stages/together/make-most.htm

But the same considerations as Arlene discusses regarding alt med

could also be made regarding conventional treatment or clinical

trials. As previously noted (see reference in post #7860), not all

clinical trials are particularly promising - especially the Phase I s

which may be all that an " advanced " stage IV is eligible for after

having progressed thru multiple chemo regimens. I read somewhere

that only around 5% of patients actually do benefit from a Phase I

trial (most drugs being tested at this phase are failures). And even

many drugs being tested in Phase III trials are not that spectacular,

with HUGE numbers of patients needed for the trial to show

minimal " survival benefit " of a month or two. See, e.g.

http://www.cancerdecisions.com/030703.html

and some of my comments here

http://ourworld.compuserve.com/homepages/suthercon/cca4703.htm

regarding the F. Horrobin commentary in the Feb 22 2003 Lancet

(prestigious peer reviewed medical journal).

In time, Molly's parents began to gain a better understanding of

these issues:

[snip]

On the train ride back to Washington, they kept Molly busy with card

games, puzzles and word searches. But Ms. Trick says she and her

husband also started thinking their research might not lead to a

solution. They talked about whether their pursuit of more options

might cost Molly what little time she had left to enjoy her life.

" We had done everything we could think of, " says Mr. Foley. " Once you

start looking, one thing always leads to another thing, and you just

keep going down that path searching for the next thing to try. "

Says Ms. Trick: " You keep going because you feel that if you're doing

something -- anything -- your child won't die. "

And, even though only 5 years old, Molly herself showed a wisdom far

beyond her age (and beyond that of many adults). When faced with a

choice of further chemo treatment (which would have clearly reduced

her quality of life and had uncertain but likely minimal - if any-

efficacy) vs " no more! " , she chose the second option:

[snip]

Enrolling Molly in the trial would mean she would have to undergo

another operation in order for surgeons to install a central line in

a vein in her chest to make it easier to administer chemotherapy

drugs and draw blood. She would need hours of chemotherapy infusions

and could suffer side effects.

One of their oncologists had advised them to ask Molly what she

thought.

Molly was sitting on her parents' bed reading a picture book when her

parents sat down beside her. They told her there was another medicine

available and that she would have to go to the hospital. Molly had

already told her parents that she was convinced the doctors would

have fixed her already if they knew how. Now, she answered without

hesitation, according to her parents, who made notes on the

conversation in a journal at the time.

" I don't want them to put the medicine in me, " she said. " I don't

want them to do one more thing to my body. "

Cancer is a very strange thing. It seems that some people with stage

IV cancer can survive a very long time while doing a minimal of

treatments. I suppose I myself would fall in that category. First

diagnosed with stage IV cancer in March of 2001, I have never had ANY

form of chemo until Nov. of this year when I started on Xeloda.

This, of course, was completely against " oncologist recommendations "

and " recommended treatment course " . So here we are, almost 3 years

later. Why am I still here? I don't think any of my doctors

expected me to be, given the choices I made. And I can't even answer

the question myself! I tried some " alterative stuff " at the

beginning of my " cancer journey " , but it is difficult to say whether

it really contributed anything or not to my survival (which is why

I don't talk a lot about it here!). I sort of think

that each cancer patient has a DIFFERENT cancer from every other

cancer patient. The genetic drivers (oncogenes, tumor suppressor

genes) of cancer are NOT the same for everyone. Some patient's

disease is of a relatively non-aggressive nature...they will

do " better " than most patients REGARDLESS of what treatment they

choose. And some patinets will do worse than most patients

regardless of what treatment they choose because their cancer has a

more aggressive bent. We may not like it, but the fact is there

seems MUCH to do with cancer and the course of disease which is

completely beyond our control. Having accepted this, my philosophy

has always been, " I want to live as well as possible, for as long as

possible " . My treatment options will always attempt to maximize

QUALITY of life over quantity. I do not value hospital time

and time on the ventilator or other invasive techniques if there is

little or no hope of recovery following the sacrifice. And I think

that most caregivers, even if not thinking along these lines while

their loved one is alive, eventually come to the same conclusion when

retrospectively " looking backwards " following their loved one's

death.

For " late " stage IVs (and by this, I mean stage IVs who have done and

progressed on all of the recommended chemos, multiple oncologists at

different institutions seem to have run out of treatment choices),

there undoubtedly comes a time when further treatment does more harm

than good. Actually, I suspect quite a few " late " stage IVs have had

their lives shortened rather than extended by insisting on treatment

when it was detrimental. So apparently do many oncologists - see

http://bmj.bmjjournals.com/cgi/content/full/322/7297/1267/a

[snip]

Many patients with cancer receive chemotherapy at the end of life,

even if their kind of cancer is known to be unresponsive to the

drugs, according to a study reported at the recent annual meeting of

the American Society of Clinical Oncologists held in San Francisco.

The finding " strongly suggests overuse of chemotherapy at the end of

life, " lead author Dr Ezekiel Emanuel, chairman of the department of

clinical bioethics at the US National Institutes of Health, told

delegates. " Many are concerned with the quality of end of life care

and specifically that patients should not be overtreated with

ineffective therapies that won't improve their quality of life, " he

said

Of course, recognizing when one is in such a situation may not always

be easy.

I have a lot of references in the " Death and Dying " part of the LINKS

section http://tinyurl.com/zje0 which look further into many of the

issues talked about here....and some that weren't (but should have

been) because this post is already way too long! Death is a natural

part of life, but fear of death drives many decisions we make during

the course of late stage cancer. As such, it is worth looking at

more closely. I have personally found that doing this has lessened

my own fear, and feel that it has helped me make better decisions

regarding my own treatment.

Some of the ones I recommend the most are:

Hospice Net - great collection of articles for both patients and

caregivers

http://www.hospicenet.org/

Arlene Harder - Facing the End of Life Together

http://www.learningplaceonline.com/stages/together-intro.htm

Arlene Harder - Spirituality (non-denominational, not associated with

any organized religion)

http://www.learningplaceonline.com/spirit-intro.htm

Crossing the Creek - by hospice nurse Holmes

http://crossingthecreek.com/

Short stories about Death and Dying

http://crossingthecreek.com/finaljourney/

Dying Patients who Acknowledge Terminal Prognosis Less Depressed

http://www.annieappleseedproject.org/studonterpat.html

To Flee Or Not to Flee: The Problem of Denial When Dying

http://www.cancerlynx.com/denial.html

Dying Words: How Should Doctors Deliver Bad News?

http://www.newyorker.com/fact/content/?021028fa_fact#top

Widow Net - Main site

http://www.fortnet.org/WidowNet/

Widow Net - Bulletin Board

http://www.fortnet.org/cgi-bin/ubb/ultimatebb.cgi

Widow Net - New Member Introductions (many CC widows/widowers there)

http://tinyurl.com/zji1

I hope this discussion and references are of help. As with all

things cancer related, no " right " answers, different paths for all of

us. I do believe that discussion of these issues is of benefit and

will help clarify opinions/viewpoints...and will help caregivers do

what is right for THEIR loved one when the time comes.

Best Wishes to All,