Sarah Hershberger comes home to die

[SidDithers]

http://scienceblogs.com/insolence/2013/12/23/sarah-hershberger-comes-home-to-die/?utm_source=widgets

It was a couple of weeks ago that I last provided an update on the case of Sarah Hershberger, the 11-year-old Amish girl from Medina County, Ohio with lymphoblastic lymphoma whose parents decided to stop her chemotherapy because of how sick it was making her. As I explained early on and on multiple occasions afterward, Sarah had about an 85% chance of long term survival with the chemotherapy regimen she was undergoing but a close to zero percent chance of surviving without it. In other words, her parents, Andy and Anna Hershberger, are committing gross medical neglect of their child. I realize that they love their daughter and are doing what they think is right for her. I realize that they don’t think they’re abusing their daughter. Unfortunately, they are. Their decision is almost certain to lead to the unnecessary and unpleasant death of their daughter sooner rather than later.

Because of this, the hospital, Akron Children’s Hospital, went to court to try to have a medical guardian appointed for Sarah, someone who would make sure that she received effective science-based treatment for her cancer. After a couple of rulings went against it, the hospital eventually won, and a medical guardian was appointed. Unfortunately, the parents fled. Where they fled is not exactly clear, but flee they did, apparently out of the country, while “health freedom” advocates and friends of the family claimed that Sarah was doing very well and “cancer free,” thanks to “natural” treatments being administered by unspecified practitioners. The quacks piled on, spinning the story as an evil, profit-crazed hospital trying to poison a poor innocent girl for fun and, above all, profit. Meanwhile, as I described last week, we learned that the Hershbergers are subjecting their daughter to the most useless and nonsensical forms of quackery, including including high dose vitamin C and B17 (the fake vitamin name given to the quackery known as laetrile), oxygen therapy, detoxification methods, as well as the IV chelation.

Most recently, a Libertarian-leaning 1851 Center for Constitutional Law, which is basically a group consisting mainly of Maurice Thompson, a got involved raising money for the Hershbergs on the basis of “health freedom.” He tries to promote “health care freedom, private property rights, taxpayer rights, school choice, political speech, commercial speech, ballot access, and voter integrity.” In this case, he has stepped in to make sure that a little girl does not get the treatment she needs to survive, if successful thus virtually guaranteeing her death. Sadly, the attacks from quacks and their supporters like Thompson have taken their toll, even on a hospital so dedicated to making sure that Hershberger gets potentially life-saving treatment that it went to court to see that it would happen. Two weeks ago, the hospital apparently gave up, and the woman appointed as the medical guardian for Sarah Hershberger resigned, at which point I lamented that Sarah Hershberger is probably doomed.

Now she has apparently finally come home with her family to die:

Previous DU threads here:
http://www.democraticunderground.com/1014579812
http://www.democraticunderground.com/10024102236
http://www.democraticunderground.com/1014665763


Dumbass parents.

Sid

[MineralMan]

1. But...Big Pharma...

Sad story. Doomed by blind ignorance and willful negligence.

[derby378]

2. Science allows us to hear fragments of the language of God

At least, that's a poetic way of looking at it. But I happen to put credence in this view.

And that's why science will goosh dogma like a bug. Every. Single. Time.

[freshwest]

33. +1

[Big Blue Marble]

3. It is so coarse of you to judge her parents.

She begged her parents to stop the treatment. She said she could not want to
continue the treatment. They were desperate. It is outrageous for you to
call them "dumbass" (sic). It was not your daughter who was in agony

You have no right to judge the family decision no matter what the outcome.
You would think on the eve of Christmas Eve you would have better things
to do than say I told you to a possibly dying child in a most painful situation.

[SidDithers]

5. No. Fuck the parents...

their child was suffering from a disease with an 85% recovery rate, and they took her out of treatment.

You think when she's dying, it's going to be less painful than the chemo?

Sid

[Big Blue Marble]

9. It is not my decision or yours to make.

It was a decision that she and her parents had the right to make.

[kcr]

10. Parents do not have a right to kill their children.

Parents have a responsibility to care for their children. They are not property that belong to the parents to do with as they wish.

[Big Blue Marble]

13. Withdrawing treatment is not killing your child.

The child asked for the treatment to stop. There is no evidence of
your conclusion that they considered their child property. They were
and are greatly antagonized by the situation as you would hopefully
be as well.

As I said to you below, it is only the author's speculation that the child
is dying.

[kcr]

14. Yes it is.

And what you said below is wrong. Without treatment she was sure to die. Not speculation. The parents did not have the right to withhold life saving treatment from their child. An adult can make that decision for themselves. A parent does not have the right to do that for their child. A parent is responsible for caring for a child and raising them. Not wit holding care that leads to bodily harm and death. It does not matter that the child wanted it to stop. The parents are responsible for her.

[Big Blue Marble]

16. You are entitled to your opinion.

And that is all it is, your opinion.

[kcr]

18. As opposed to yours?

But mighty gracious of you

[Logical]

95. LOL, do you understand percentages? I can explain it if you want! nt

[Big Blue Marble]

103. Oh good, I would so appreciate that.

Percentage have always been so difficult for me.

[intaglio]

107. Your post tilte is a complete and utter falsehood

There have been several cases where parents have withheld diabetic medication from their child because they believed Jesus or God would cure those children; is that not killing a child?

There have been cases in the past where children have died because parents have not permitted life saving blood transfusions; is that not killing your child?

What is more such parents have got away with it 2 or three times before the courts have acted.

[loudsue]

30. I totally agree with your sentiments Big Blue Marble.

I hate it when people are forced to carry babies to term that they clearly don't want, forced to subject themselves to barbaric chemical and medical treatments they don't want, or are forced to suffer the determination of someone who has no business inserting themselves into a difficult and emotional PERSONAL situation.

There are worse things than dying in this world. I'm sorry Sara and her family have had to suffer through this bullying at a time like this.

If Sara had WANTED the treatment and her parents were withholding it, that would be one thing. But that was totally not the case.

[Big Blue Marble]

42. You are so correct that the issue is that Sarah wanted to stop the treatment.

There is an assumption by the critics that somehow this decision was based on
faulty religious thinking. These parents were willing to go through with the treatment
until Sarah was so ill that she could not take any more suffering. The critics would
force her to endure what she said she could not take regardless of what she wanted
or how much she suffered.

I can only feel the most compassion for parents caught in this agonizing situation.
Of course, they do not want to lose their daughter despite the callous accusations
being thrown out on this thread.

[Logical]

96. Wow, so 11 is the age you let tem decide? WTF? nt

[Big Blue Marble]

98. It would depend on the situation and the maturity of the child. N/T

[Logical]

100. Really? In pain? Agony! Let them decide? Wow, you make me depressed! nt

[Big Blue Marble]

102. If you are depressed, you did it to yourself. N/T

[Tumbulu]

79. I am with you on this one

and as usual, the know-it-all crowd is very quick to call people "stupid" around here.

A 13 yr old certainly has the right to say stop with the painful treatments. Parents who are not at all into the modern way the world operates certainly would not trust what the medical people are telling them.

it is sad, but entirely their right.

[Demo_Chris]

109. I suspect you would not say that over a broken bone or a shot...

The point being that no, a child does not have a right to decide that it hurts too much and they don't want it. It sucks, but there it is.

That said, I am hesitant to stand in judgment here. If the parents cite only the pain and wishes of their child, perhaps they deserve a pass, but breathe even a whisper of god and they can rot in prison for all I care.

[pnwmom]

4. How do you know she wasn't sick enough to be in the 15%?

Some people have genetic conditions that mean their bodies can't process chemo correctly. My father died of chemo rather than his stage 2 cancer. We don't have any details about the girl's situation except her age -- which is old enough to make her own decision about what she could go through.

[SidDithers]

6. 11 is old enough to make her own informed medical decisions?...

Really?

Sid

[pnwmom]

7. Yes. And I'd say that if she needed an abortion, too. She is old enough

to be able to give or withhold her consent.

[loudsue]

35. I totally agree pnwmom. Thank you for speaking up.

I'm so sick of the medical bullying that goes on in this country I could scream. If everyone worked as hard at trying to get insurance companies OUT of the health care field as they do trying to cram their medicine down someone's unwilling throat, then maybe the people who actually WANT those chemicals could get them.

[Lizzie Poppet]

66. Not legally, it isn't.

Informed consent on any matter is not within the legal purview of a minor. Whether it is something an 11-year-old is capable of giving in in any practical way depends entirely on the 11-year-old. Given that this one was very probably raised in an atmosphere of superstitious ignorance of science, I'd bet a pretty penny she was not remotely capable of giving informed consent in this matter.

[kcr]

8. I would listen to the doctors

She might be in the 15% but that's some pretty ridiculous odds considering its her life. Now she's dying, and that won't be painless. Her parents were wrong and they killed their child.

[Big Blue Marble]

11. At this time, there is no evidence, only speculation on the part of the author

that she is dying based on statistics.

[kcr]

12. Not speculation. It's a treatable cancer.

The chances she would have died with treatment are small. The chances she would die without are certain. Their decision killed her.

[Big Blue Marble]

15. Read the article.

It is only speculation at this time that the child is dying. There is no reported evidence
of that fact. You are jumping to the conclusion of the author.

Your capacity for judgement is awesome indeed. It must be wonderful to be so omniscient.

[kcr]

17. You think the cancer is going to go away on its own? n/t

[Big Blue Marble]

19. I have no idea and neither does the author as to how this child is doing.

IMO, he or she seems awfully anxious to dance on her grave as there is no evidence
that she is out of the remission that was last reported in news.

There will be time enough for you to castigate the parents and increase your
feelings of superiority if she does die later.

[kcr]

20. These diseases aren't mysterious. Their outcomes are generally well known.

And your characterization of the author is ridiculous and really says it all.

[Big Blue Marble]

21. Why does the author claim the child has come home to die

when, at this time, their is no evidence only projection based on statistics that she is out
of remission?

Is there not time enough later to judge the parents if the cancer returns? Please
remember the child has had two round of chemotherapy. Even the author acknowledges
that. She is currently in remission. Why the hurry to jump all over the parents?
It would show much more character on your part, to at least wait until you get
the outcome that you are so certain is ahead. Then you can proudly say I told
you so.

[kcr]

22. Why? Because her parents withdrew her treatment

They went into hiding to avoid it. The fact they came back is a big clue.

[Big Blue Marble]

25. Clues?

They came home because the government and the medical system were no longer
threatening them with forced treatment. At the time of the last news stories about
their return, it was reported that she was in remission. Can not we be grateful
for that? And grateful, that they like all of us would rather be home?

[kcr]

28. No longer threatening them because it was too late.

If she were in remission, the courts wouldn't have forced treatment.

[Big Blue Marble]

29. Why did the news stories earlier this month say she was in remission

if she is not? The medical system and the court wanted Sarah to finish the full
two years of chemotherapy regardless of whether she was in remission or not.
They believed as you do that would be her best chance of survival. She did
not want to complete the full two years of chemo as she was extremely ill
from the treatment so far and did not think she could finish the full two years.

[kcr]

31. What news stories?

The news stories I read and saw did not say she was in remission.

[Big Blue Marble]

32. You have Google, don't you? N/T

[kcr]

34. Yes, I do. And I happened to google it.

I found one story that claimed she was cancer free now, and it was The Daily Paul. So, color me not convinced.

[Big Blue Marble]

44. What difference does it make whether you are convinced or not?

Would you not be relieved if she is in remission and doing well?

[kcr]

47. No. I believe that parents don't have the right to kill their children

because I don't care that children die....

What difference does it make whether I'm convinced or not? Well okay, don't try to convince me then. Apparently I'm right though, because no one besides Rand Paul is saying she's cured.

[loudsue]

36. Oh! So now the courts and the medical establishment are so fucking BENEVOLENT?

Really????

[kcr]

38. What?? Are we supposed to go back to the days where we drilled holes in skulls?????

I mean, what?????

Seriously. Yeah, I'm sorry, but parents have a duty and responsibility to their children. If they have a deadly disease, they can't just let them die.

[loudsue]

46. Sounds to me like the little girl is the one that convinced the parents to let her quit treatment.

She is at peace with herself. Let her be. Letting someone die is not necessarily the same thing as letting them determine what care they want and don't want. We are ALL going to die. There is NO WAY out except that. If she'd rather take the chance on sooner than later to avoid the torture you would love to put her through, that should be between her and the people who know her and love her best.

[kcr]

52. That's too bad for the little girl. It's a shame her parents abdicated their responsibility.

No, I'm sorry. I don't think we let little kids be and die because they don't want life saving treatment. That's nuts. And if the parents don't want to do it, they lose, and someone else needs to step in and do it. It's done when they're abusive and neglectful, too.

[Big Blue Marble]

48. No matter how much you rant and rave, this situation is

not as simple or cut and dried as you want to make it. Are you a parent?
Have you seen your child suffer greatly? Our need to protect our children
includes protecting them from suffering. Sarah was begging after great
suffering to quit the treatment. Would you be so heartless to ignore her
pain without a care and force her to continue what she said she could not bear?

[kcr]

55. It absolutely is as cut and dried.

Parents aren't allowed to abuse and neglect their children for the same reason. Parents don't get to decide to let their kids die. Plain and simple.

[Big Blue Marble]

61. As I said you are entitled to that opinion.

In this case even the court and the medical system have withdrawn. They have
left this decision up to the parents whether you like it or not. As a parent, I am
grateful that the decision has been left to the family.

Many adults decide to stop chemo because they cannot endure the suffering.
You would deny an eleven year old the same right. Based on what logic I do
not know. I know at eleven I would have wanted that choice and was old enough
to make the it.

[kcr]

63. Adults can make that decision.

Children cannot. And parents, if they make that decision, are abdicating their responsibility as parents. Yeah, it's my opinion (thank you oh so much for letting me have it) and thankfully it's my opinion that prevails. They only withdrew when these parents ran off and it became clear there was nothing they could do. But parents do not own children. CPS exists. Your way does not exist, and thank goodness for that.

[Big Blue Marble]

82. At what age would you establish personhood?

At what age would you say a person has a right to stop treatment?
Would you force a 17 year old, a fifteen year old?

My way does exist as these parents have shown. They persevered
and the state finally backed out even if you would not. You would
have forced this girl to undergo treatment that she was refusing
because of great suffering.

[kcr]

86. No, it doesn't. The court did indeed rule in the hospitals favor. They fled.

Establish personhood? Seriously? I take it you think it's okay that parents beat and abuse their children since you seem to think it's okay to for them to be allowed to let them die, too. I really don't get it. What does personhood have to do it with? Parents don't own their children. And since when did children have the full rights that adults have? They can't vote or drink? Why do you think they have the right to die? That's insane.

[Big Blue Marble]

88. You avoided the question.

When would you bestow the right for a person to discontinue treatment she or
he does not want to continue? At what age would you say a person has the right
to refuse medical treatment? Hint: this has nothing to do with smoking, drinking,
or child abuse.

[kcr]

90. It has everything to do with that.

You are claiming that children should have personal autonomy up to and including making the decision to die. Why are those other things not included? Do you think they shouldn't be able to smoke or drink, but saying "I want to die rather than have treatment" is a-okay? Why is that? Okay, I'll answer your question then if you'll answer that. The right to refuse life saving medical treatment? At the very least, 18.

[Big Blue Marble]

91. So you would force a 17 year old to have a treatment he or she would not want?

Would you then tell a 19 or 20 year old they must have the treatment as well?
I suspect you would prefer to force adults into treatment as well if you could.

You say that children are not the property of their parents; then who do they
belong to, the state?

[kcr]

92. Why would you suspect that?

How does parents can't kill their kids that they're responsible for with their decision making translate to I would force adults to make decisions for themselves? Answer. It doesn't. Because adults are responsible for themselves.

[Big Blue Marble]

93. I suspect that because you said "at least 18."

After 18, a person is legally an adult. What do you think of an adult with this same
cancer refusing treatment because she or he could not stand it? And why would
you not give a child this same right to refuse?

[kcr]

94. Sometimes the legal age is 21

So I wouldn't have a problem setting the limit there. I think adults are responsible for themselves. They have the right to make those decisions for themselves. Children are not. You're viewing children and adults as if they are the same. They are not. Children cannot even sign contracts and be held legally bound to them. They cannot vote. There are firm restrictions in how they can be employed. But most importantly? Their parents are responsible to them. And their parents can be held liable when they abdicate that responsibility.

[Big Blue Marble]

97. We are in total agreement that parents are responsible for their children's welfare.

That fact does not preclude that a person has no right to refuse medical treatment
until he or she is 21. Would you really look a 20 year old in the eye and tell her
she must be forced to have a treatment that she adamantly does not want?

[kcr]

99. Yes, it does.

Do children have the right to refuse food? A child stops eating, can a parent just simply wash their hands of it and say, whelp, they don't want to eat! And do nothing? It's their choice? No. And just because it's a medical treatment doesn't make any difference. Adults have the right to refuse treatment. Children do not. If a child is sick, they need treatment. If they say no, the parent has to override for their own good. And if a parent makes a decision that harms the child, they're responsible for that. Parents have to override the wishes of their child if those wishes harm the child.

[Big Blue Marble]

101. You are generalizing this situation.

This was not a child who willy nilly decided not to eat. This is a child who was
suffering greatly from a treatment that she no longer could bear. Her parents
after deep consideration made a decision with which you strongly disagree.

I am arguing that they should have had that right under these specific circumstances and
their daughter should have the right to discontinue that treatment even if you or I
would have made a different decision.

You and I are not going to change our minds about this so we will need to agree
to disagree. Thank you for sharing your thoughts and feelings about this issue.
It is a complex and painful situation with no easy answers.

[Hassin Bin Sober]

24. I don't know why the cops can't grab the kid and put her in treatment.

And the parents in jail.

[kcr]

26. It's probably too late.

Which is why they came back. I think they should be charged, but I'd hope they'd wait. As much as I'm against what the parents did, she needs them right now.

[loudsue]

54. See? You are totally DEVOID of compassion.

That is why I can't tolerate the medical profession in this country. There are so many horribly cruel people pushing their twisted beliefs and barbaric "science" on real live people.

Bullies. Not nice bullies.

[kcr]

56. I'm devoid of compassion?

I'm not the one who wants to let her die.

[loudsue]

57. You, too, are going to die, kcr. Me, you, her. Every single person.

It's either sooner or it's not so soon. Let her go.

[kcr]

58. Wow. She's a child.

If that doesn't illustrate how wrong that is. I don't know what else will. Yes, I'll die, but I've already lived half a lifetime. I'm really not okay with children dying when there's no reason for them to.

[loudsue]

60. There IS a reason.....she chose it! She would rather die HER way than YOUR way.

To her, her way is easier FOR HER. Chemo DOES kill some people. And there is absolutely NO WAY you can 100% guarantee that the chemo wouldn't weaken her enough to do her in, especially after being forced against her will.

[kcr]

62. It doesn't matter if she chose it. She's a child.

Her parents have the responsibility to ensure her survival. My parents would have done that. I'd sure as hell would do it for mine. My son nearly faints and turns three shades of white at the thought of getting the little finger prick blood test. God forbid he ever need serious treatment for anything. I know there's a good chance he'd resist it and it would be awful. But for sure if his life depended on it, we'd do it. Because it's our responsibility.

[SidDithers]

77. WTF??...

Sid

[Hassin Bin Sober]

81. I consider it, at this point, a rescue mission.

[pnwmom]

37. Her medical records haven't been released so all this is speculation. n/t

[kcr]

40. I guess strictly speaking then, a good chunk of what we talk about on DU is speculation.

I mean, a lot of what we discuss is from the media. And it's not as if hte parents are flat out denying she has cancer

[pnwmom]

45. She has cancer. The question is whether, in her case,

all doctors would have agreed that chemo was the way to go.

My father had chemo for a slow growing cancer. Unfortunately, his doctors recommended chemo for his stage 2 cancer even though they knew he had a genetic condition that made it difficult for him to process. They did reduce the dose of the chemo, but it made him violently ill. He died a few months into the chemo. If the disease had been allowed to run its course, he probably would have lived a few more years.

These decisions aren't as clearcut as some people think. That's why I think it's stupid for people to be jumping in here when no one knows what the girl's medical situation was, except that she begged to stop the chemo.

[kcr]

59. But they are.

Citing a rare example doesn't change things. Some cancers are indeed very treatable.

[pnwmom]

70. But why criticize these parents when we don't know about her particular risks? n/t

[kcr]

71. Why are you pretending that these criticisms are coming out of nowhere?

A court ruled in favor of the hospital. That is a substantial clue that tells us there is a good chance the hospital was right that this little girl needed the treatment.

[Hassin Bin Sober]

23. Because the court oppointed guardian said so. Because her doctors said so.

Because the judge said so. Because science said so. Because facts and evidence said so.

You are the only person proposing that BS that she might have that genetic condition. No where in any stories has that been brought up.

Drop it.

What we do know is every entity I mentioned above says continue with the treatment. That's enough evidence your cockemamy "theory" should be put to bed with your other quack theories.

[loudsue]

39. Science says that this barbaric treatment is right for this specific girl?

One size fits all? Sorry. That just doesn't fly.

[Hassin Bin Sober]

50. No, her doctors, medical guardian and the court said the treatment is right,

On the other side of the equation, we have an eleven year old, religious nut-bar parents with some VERY creepy concerns with their 11 year old's fertility and a Tea-bagger freedumb foundation..

[pnwmom]

41. Doctors told my father to have chemo. It's what they do,

even when you have the genetic defect, because it's all they can offer. So my father followed their advice, died while getting the chemo, and probably lost a few years of life, compared to if the slow-growing cancer had run its course.

None of us have any idea what's in her medical records because they haven't been released.

So drop it.

[Hassin Bin Sober]

43. And Steve Jobs would be alive today if he didn't subscribe to goofy new age BS that you tout.

[pnwmom]

49. He would have been alive today? He had pancreatic cancer, which

has one of the highest mortality rates of all cancers. Your ignorance is showing.

[Hassin Bin Sober]

53. LOL. I'm gonna let this one hang out there a while for YOUR ignorance flaps in the breeze.

[pnwmom]

64. He had an islet cell tumor of the pancreas, which was diagnosed nine years

before he died.

http://www.nlm.nih.gov/medlineplus/ency/article/000393.htm
Outlook (Prognosis)
You may be cured if the tumors are surgically removed before they have spread to other organs. If tumors are cancerous, chemotherapy may be used, but it usually cannot cure patients.

Life-threatening problems (such as very low blood sugar) can occur due to excess hormone production, or if the cancer spreads throughout the body.

[Hassin Bin Sober]

65. You are getting closer.

[pnwmom]

68. According to the NIH, if the tumor has spread, chemo is unlikely to cure.

You may be confusing this with other benign tumors.

http://www.nlm.nih.gov/medlineplus/ency/article/000393.htm

Outlook (Prognosis)
You may be cured if the tumors are surgically removed before they have spread to other organs. If tumors are cancerous, chemotherapy may be used, but it usually cannot cure patients.

Life-threatening problems (such as very low blood sugar) can occur due to excess hormone production, or if the cancer spreads throughout the body.


http://healthland.time.com/2011/10/05/the-pancreatic-cancer-that-killed-steve-jobs/

Whether these treatments helped to extend Jobs’ life or improve the quality of his last days isn’t clear. But cancer experts expressed surprise that Jobs survived as long as he did, continuing to fight his disease.

[Hassin Bin Sober]

78. He had a PNET - Pancreatic Neuro Endocrine Tumor.

The survival rate is between 95-100% if treated with surgery.

My partner was diagnosed with one in December last year. He had the surgery in January. The surgeon who removed my partner's pancreas tail and spleen (due to shared blood vessels) explained they don't classify them as malignant or benign. They look at what they are doing (spreading?).

But they ALL should be treated as malignant because, as you pointed out, they don't respond well to chemo.

They are very slow moving so they tend not to be metastasized when they are detected. Some refer to them as "cancer in slow motion".

Steve Jobs, before he died, acknowledged that he fucked up. He was too "smart" for his own good and opted for juice diets and green tea when his doctors were saying he needed surgery. By the time he relented, he had liver and stomach involvement.

Quackery and Jobs did Jobs in.

[pnwmom]

84. You are assuming it hadn't spread before it was seen on the scan.

Doctors disagree with you on that.

I certainly hope the situation is different with your partner, though.

Dr. Dean Cornish, a friend of Jobs who recommended he have surgery, said Jobs made a well-reasoned decision. Other experts commented that his tumor had probably already spread – which means, it was likely incurable – by the time it was first discovered.

http://www.nytimes.com/2011/11/01/health/hindsight-is-kind-to-steve-jobss-decision-to-delay-surgery.html

A Tumor Is No Clearer in Hindsight


“Steve was a very thoughtful person. In deciding whether or not to have major surgery, and when, he spent a few months consulting with a number of physicians and scientists worldwide as well as his team of superb physicians. It was his decision to do this.

SNIP

“No one can say whether or not having surgery earlier would have made any difference because of the possibility of micrometastases.”

Dr. Edward M. Wolin, co-director of the carcinoid and neuroendocrine tumor program at Cedars-Sinai Medical Center in Los Angeles, said that among patients with the kind of cancer Mr. Jobs had, “when they are first found on a scan, about 60 percent of the time it’s already metastasized to the liver.”

Another expert, Dr. Steven K. Libutti, said that based on his reading of the new biography, it seemed likely that Mr. Jobs’s tumor had spread by the time it was found, and the delay in surgery probably did no harm. Dr. Libutti is director of the Montefiore Einstein Center for Cancer Care in New York and of its neuroendocrine tumor program.

[Hassin Bin Sober]

87. LOL. You just heard of this like 10 minutes ago and now you are a google expert. LOL

[pnwmom]

89. No, actually, my father's mother died of pancreatic cancer, so it's always

been in the back of our minds (my siblings and mine), whenever we have to recite medical history.

She was only 56, so I never met her. I'm also not sure what kind she had, but back in the 50's they didn't have good treatments for any type.

I first remember reading about it when everyone in Jimmy Carter's family died of it except for Jimmy. That got my attention since it was the same kind of cancer my grandmother had. Until then I hadn't realized how virulent it was.

Again, things are different today and the outcome for your partner is much more hopeful.

http://www.nytimes.com/2007/08/07/health/07jimm.html


“We started out a long time ago with my father dying of pancreatic cancer,” Mr. Carter said in a telephone interview. “One by one, both my sisters and brother died of pancreatic cancer.”

His mother had it as well.

Mr. Carter said that he and other relatives had given blood for studies aimed at finding genetic abnormalities that might cause the disease and help doctors diagnose it.

For a time, Mr. Carter said, he had CT scans twice a year to look for lesions on his pancreas. His doctors switched to M.R.I. scans, fearing that repeated CT scans involved too much X-ray exposure.

[Hassin Bin Sober]

104. Again, you are conflating Adenocarcinoma with PNET.

In this case, the Adenocarcinoma is the more prevalent (95%) cancer AND the more deadly.

PNETs like the one my partner and Jobs had have high survival rates if removed quickly.

That hodgepodge of doctor quotes you pasted don't even make any sense.

Jobs' own biographer says Jobs regreted not having the surgery "before it spread".

These doctors saying "well maybe it spread we will never know" a full of it. His own biographer says it was discovered by chance (which is the best way to find them before symptoms) and manifested itself as a spot on his pancreas with no other involvement.

[pnwmom]

105. As I told you, I don't know what kind my grandmother had.

All I know is that it started with diabetes.

If you read the last article I linked to, you would know that even though Jobs wondered whether he had made the right decision, his doctor friend -- and other doctors -- said it might have already spread. (As you must know, a micro metastasis wouldn't have shown up on the scan. Or one could have been caused by the biopsy itself.) His biographer had no special medical knowledge; he was just repeating what Jobs had said.

In any case, he lived for 9 years after his diagnosis, which is good even for HIS kind of pancreatic cancer. The terrible forms kill in months, not years.

[Hassin Bin Sober]

106. Yeah, I know about the bad kind.

The week before my partner's surgery, his stepdad was diagnosed with Adenocarcinoma. Gone in 5 weeks.

Trying to convince his mom he would be ok was the hard part.

[pnwmom]

108. Wow. That must have been terrifying for his mother.

We have been dealing with a child's serious health issues since the age of 12. She's 30 now, and we still don't know what exactly she has or what the prognosis is (it affects multiple organ systems, including her pancreas, but she doesn't test positive for auto immune disorders.)

So I can imagine how scared your partner's mother must be for him. I'm glad he has you to help support him. It's hard for a parent to do that when she's so worried.

[kcr]

67. I'm thinking some details were left out there n/t

[pnwmom]

69. Here's a link to the NIH.

Many of these tumors are benign, but when they're malignant they can spread and are usually not curable with chemo.

http://www.nlm.nih.gov/medlineplus/ency/article/000393.htm
Outlook (Prognosis)
You may be cured if the tumors are surgically removed before they have spread to other organs. If tumors are cancerous, chemotherapy may be used, but it usually cannot cure patients.

Life-threatening problems (such as very low blood sugar) can occur due to excess hormone production, or if the cancer spreads throughout the body.

[kcr]

72. Yes, but if they're caught early and treated with surgery prognosis is good

He elected not to have the surgery. He wanted to try alternative therapies first. That decision may have cost him.

[pnwmom]

73. It's not "good." It's better than the more common form.

The prognosis is measured in years rather than months.

From Time:


http://healthland.time.com/2011/10/05/the-pancreatic-cancer-that-killed-steve-jobs/

Whether these treatments helped to extend Jobs’ life or improve the quality of his last days isn’t clear. But cancer experts expressed surprise that Jobs survived as long as he did, continuing to fight his disease.

[kcr]

74. I didn't say it was "good"

I said he has the rare form that when caught early can be treated with surgery. Nothing you are pointing at contradicts that.

[pnwmom]

75. Yes you did. You said,

"Yes, but if they're caught early and treated with surgery prognosis is good."

His doctor didn't urgently recommend surgery because 90% of these are benign. Unfortunately, he did do a biopsy and the biopsy itself could have started micro metastasis.

Even so, Jobs lived 9 years after his diagnosis -- a good result, actually.

Once again, everyone's debating with few facts about his precise situation.

[kcr]

76. Oh, that's the good you were referring to.

Well, yes, it is. You're wrong.

9 years is a good result. But it's possible if he'd had the surgery he could have done even better.

[Hassin Bin Sober]

80. You are wrong when saying good. The prognosis is excellent.

The nine years is no measure of how he handled the treatments.

PNETS - Pancreatic Nuero Endocrine Tumors are referred to as "cancer in slow motion" - his chances were blown in the beginning when he refused surgery. After that, it was a slow motion train wreck.

He fucked up and he admitted it before he died.

My partner had the same cancer in December last year. The surgeon said "we always hesitate to use the word "cured" but you are cured"

[kcr]

83. Yep. It's very sad.

Such a shame.

[Hassin Bin Sober]

85. There were people in the PNET community that were none too thrilled with Jobs.

He had an opportunity to educate people about his relatively rare but misunderstood cancer.

Instead, he played cagey denying at the end that his problems were cancer based.

I remember when he was getting that liver thinking why are they wasting a liver on a guy with pancreatic cancer?

Coincidentally, my partner's step-dad was diagnosed with Adenocarcinoma the week before we did the surgery. He was gone in 5 weeks.

My partner's poor mom was inconsolable thinking both her husband and son were dying of the same disease. It took a lot of convincing he would be OK.

[Humanist_Activist]

27. I will say that once things are...over, the parents need to be charged with manslaughter...

this is just disgusting, an innocent girl is being robbed of having a future because of the shortsightedness of her parents and other adults in her life.

This is just fucking appalling.

[hrmjustin]

51. With an 85% chance of beating it with treatment I think she should get the treatment and the parents

should make the child continue the treament. It is a very sad story and my prayers are with them.

Death is permanent so they should be fighting for her to live.

[joshcryer]

110. People here hate Sid and the Recs and posts prove it.

But at least we know Sid actually cares about something, yaknow, being against woo.

There are a lot of posters here who post really caustic stuff but they're all over the board.

[idwiyo]

111. Criminal dumbarse parents.

[SidDithers]

112. Agreed...nt

Sid

[idwiyo]

113. I know first hand how brutal chemo can be. I wished few times I was dead while going through it.

That's when you need someone to firmly remind you that alternative is a very unpleasant, possibly horrifying death.

This kid had 85% chance of having a long normal life. This was not a palliative care, this was a cure. Her parents had a duty to support and help her through it.
They decided to kill her instead. They should stand a trial for murder. IMNSHO.