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Old 09-19-2005, 03:02 PM   #1
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We're here for suggestions, support ONLY

Friends,

I feel like I have to comment on the content of some of our members' messages. Please remember, that as far as I know, we have no oncologists/radiation oncologists as members. We DO have a few welcome nurses. Therefore, any "advice" given by our members is strictly their opinions, albeit some after much research and experience. I do not believe that anyone here should "tell" other members to take or not take any chemo/supplements/OTC drugs. Of course, that's only my opinion. I'm just concerned that specific members are being asked for medical advice.

If you have medical questions and need specific answers, I would hope you would ask your medical provider. And we're all here to cry with you, smile with you and share our own experiences, experiences which are different with each person.

Love and light,

Lisa
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Old 09-19-2005, 05:13 PM   #2
Esther
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Absolutely, any advice you hear anywhere should be used as a starting point for your own research, and in all cases, reviewed by your oncologist as well.

That being said, I don't see any harm in board members sharing what they have found helpful for them, or information they've come across.
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Old 09-19-2005, 05:27 PM   #3
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I appreciate all these opinions and take them as such. I like to hear from people who have managed to survive long term against all odds. They must have valuable stuff to tell us.
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Old 09-20-2005, 08:02 PM   #4
Joe
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Get It Right The First Time

From the Block Cancer Foundation Website:

“DO IT RIGHT THE FIRST TIME” DAY

Richard & Annette Bloch
Sunday, June 3, 2001, which is National Cancer Survivors Day, is being designated as “DO IT RIGHT THE FIRST TIME” day! The significance is to try to get all Americans to promptly get a qualified independent second opinion upon the diagnosis of cancer before any treatment.

It has been estimated that in excess of 1,000 Americans die each week needlessly because they were improperly treated for cancer! This is not because the life-saving treatments are not available, but because the physician diagnosing the cancer is unaware of the latest and best treatment for that particular type of cancer. If we can make it a standard practice for every newly diagnosed cancer patient to have a second opinion, many of these lives and the suffering and anguish will be saved!

If a physician were diagnosed with cancer and knew he had gone to the best doctor already, do you think he would be treated without a second opinion? As Dr. Vincent T. DeVita, Jr., former director of the National Cancer Institute said, he had never met a doctor diagnosed with cancer who did not insist on a second opinion on the pathology, let alone the treatments! This is the patient’s life and they must be selfish.

The goal of “DO IT RIGHT THE FIRST TIME” day is to see that it becomes standard practice for every cancer patient to get a second opinion. Many top physicians automatically refer their patients for a second opinion prior to treatment. It is the patient of the physician who says, “You don’t need it” who needs it the most. The doctor who is afraid to admit that someone else might know something he doesn’t know, someone else might see something that he doesn’t see, or that he is human and might make a mistake is the serious threat! That is why the second opinion must become a practice in every case,
not just certain isolated cases.

Right now some people are worried about hurting their doctor’s feelings. “Do it right the first time” day must do away with that obsolete sentiment. Any physician who does not have enough self confidence to want their patient to have a second opinion is placing their feelings above the patient’s life and should not be practicing medicine. The oath of Hypocrites, which commands a doctor to do no harm, mandates a second opinion in every case of cancer.
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Old 09-20-2005, 09:48 PM   #5
StephN
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Speaking of second opinions, most insurance providers will PAY for a second opinion from a qualified professional. I have had more than one second opinion, even a THIRD opinion before starting my adjuvent treatment for breast cancer.
If your doc does not understand your need for a second opinion, then he /she may not be worth the powder to blow them up (so to speak).

As Esther says, what experience/advice/opinion/research spoken of on this board is a starting point and it is for each of us to take what interests us and go from there to see what may apply to our own case/life.

There is an ADVISORY BOARD of medical professional attached to HER2 support.org. These are the people we should be going to for questions of a medical nature.
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Old 09-21-2005, 09:18 AM   #6
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Steph,

To my knowledge members of the advisory board are consulted from time to time.
Al
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Primary care-giver to and advocate for Linda, who passed away April 27, 2006.
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Old 09-21-2005, 11:12 AM   #7
StephN
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AL,
It seems that mainly Christine and Joe get in touch with the advisory board members for specific questions. There does not seem to be an easy way for the board members to "ask the doctor."
Also Christine and Joe most likely are not able to read each and every one of the posts here to intervene with a query to the board if necessary.
We shall see how certain advice here gets handled.
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Old 09-21-2005, 07:39 PM   #8
mamacze
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Lisa, Al, Steph,

It may be that the advice we give is "just" advice; but I am so grateful for the words of wisdom that I read; especially from others who have already walked in my moccasins and have experience to share, or sound data from folks like dear Al, Eric or Joe who are right on top of the latest research and news releases; often when I share a print out of their advice to share with my onc; he is happy to read it and comments on the quality of this web site. So I say, keep the advice coming!
Love Kim from CT
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