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What made you decide to go forward with treatment?


KatieB

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Hi guys,

In a conference I had on Wednesday, alot of food for thought came my way about patients and their families at the time of diagnosis.

I was surprised (not totally) that some patients who learn of the disease from their GPs (and how that information was presented to them) that they decide not to move forward with treatment.

I had a lot to share from my own personal experiences but it's left me curious to hear from others.

I have a few questions and would be privledged if you guys would share with the message board. What you write may help others newly diagnosed who log on here, so for that reason, thank you so much.

What were some of your reasons for going forward or

opting out of treatment?

Did you ever consider opting out of treatment because of "statistics" or the standard of care your specific facility had to offer?

Were you made aware of other treatment options and were you encouraged by that?

Did the attitude of your dr. affect your decision making?

Did you hear the news of your LC and treatment options from your GP or Onc?

What, if anything, changed your mind about your treatment options?

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What were some of your reasons for going forward or

opting out of treatment? My wife and daughter, I owe it to them. Not going to beat cancer by doing nothing. It's not going to go away by itself.

Did you ever consider opting out of treatment because of "statistics" or the standard of care your specific facility had to offer?

Never crossed my mind regardless of the statistics or prognoses. I did a ton of research and still feel treatment(s) is the best option. I have excellent health care but even if I did not I would still try/find a way.

Were you made aware of other treatment options and were you encouraged by that?

Yes my doctor and I talked about what options where available for me.

Did the attitude of your dr. affect your decision making?

No. My doctor has a great attitude and even if she did not it would not affect my decision.

Did you hear the news of your LC and treatment options from your GP or Onc?

My Onc.

What, if anything, changed your mind about your treatment options?

Nothing changed my mind, the goal from day one was to beat it any way i can.

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What were some of your reasons for going forward or opting out of treatment?

I was told it would be surgery only (turned out otherwise) and curable. This was very different from what I saw 25 years ago. I am still relatively young and have only been in a committed relationship for a few short years. My father is still alive; he has already survived two wives and his other daughter.

Did you ever consider opting out of treatment because of "statistics" or the standard of care your specific facility had to offer?

I had my moments when I wanted to know what the statistics offered with treatment versus against. Than I gave up on statistics as essentially meaningless. Facilities here are top notch.

Were you made aware of other treatment options and were you encouraged by that?

Yes, and no. The doctors did not encourage anything other than aggressive treatment. They did offer referrals to some adjunct therapists (nutrition, acupuncture) if I want them.

Did the attitude of your dr. affect your decision making?

Yes,. They spent a lot of time with me to help me understand how this diagnosis varied from my mom's and why it needed to be aggressively treated. Very compassionate people.

Did you hear the news of your LC and treatment options from your GP or Onc?

Pulmonary specialist and thoracic surgeon. Onc came after surgery though was involved in treatment planning from the beginning on the review Board.

What, if anything, changed your mind about your treatment options?

In for a penny. Once surgery happened, the rest just kind of follows along.

_________________

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What were some of your reasons for going forward or

opting out of treatment?

The pulmonologist I saw was emphatic when he told me that surgery would give me a very good chance at a cure, that I was the best candidate for surgery that had ever walked into his office, and that I would have plenty enough lung function left for my bike riding. My own research also told me that surgery was likely the best shot at a cure.

Did you ever consider opting out of treatment because of "statistics" or the standard of care your specific facility had to offer?No. I considered checking elsewhere, but not opting out of treatment.

Were you made aware of other treatment options and were you encouraged by that?

My own research told me that I was probably a good candidate for VATS rather than open surgery. But VATS wasn't being done anywhere near me, and there's no guarantee that VATS won't end up being open surgery anyway, so I agreed to open surgery. With a do-over, I would travel wherever necessary to get VATS.

Did the attitude of your dr. affect your decision making?

Only to the point of agreeing to surgery there, rather than going elsewhere.

Did you hear the news of your LC and treatment options from your GP or Onc?

It was a doctor who was supposed to do my thyroid surgery who called to tell me I had lung cancer. The pulmonologist recommended surgery.

What, if anything, changed your mind about your treatment options?

A cancerous lymph node found by the biopsy after surgery caused me to add chemo to my treatment, after thinking it was only going to be surgery.

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What were some of your reasons for going forward or

opting out of treatment?

My reasons for opting out of chemo and chest radiation were that (1)the average survival difference between doing 'everything' and doing 'nothing' for Stage 4 adenocarcinoma was trivial in my opinion; (2)my cardiologist, my psychiatrist, and a pathologist friend who'd had Stage 1a lung cancer all said they would opt out of treatment in my situation; and (3)my oncologist, who was rarin' to go with chemo, made sure I understood it was only 'palliative', so I asked her what she thought needed 'palliating', since I had no symptoms; she replied 'You've got a point.'

Did you ever consider opting out of treatment because of "statistics" or the standard of care your specific facility had to offer?

Yes, because of statistics; no because of my specific facility.

Were you made aware of other treatment options and were you encouraged by that?

I was certainly made aware of the various chemo cocktails that could be administered. The onc was particularly gung-ho about carboplatin+alimta, as I recall.

Did the attitude of your dr. affect your decision making?

Yes -- my cardiologist and my psychiatrist. The onc has been fine with my decision but, if I'd only had input from her, I probably would have done chemo since she never volunteered that there were alternatives (i.e. no chemo).

Did you hear the news of your LC and treatment options from your GP or Onc?

Actually, I heard the news of both the LC and the treatment options from the cardiologist. (I'd gone to her because I'd passed out twice in the street and thought it was a heart problem, having had a massive heart attack in 2001. She sent me for a CT-scan and guessed right away what it was and spent a lot of time with me during the next 2.5 weeks that I spent in the hospital.)

What, if anything, changed your mind about your treatment options?

I was never opposed to real palliative treatment, if the treatment wasn't worse than the symptoms it was intended to relieve. When I developed mets on a vertebra that threatened to paralyze me and/or leave me incontinent and on the pelvis that caused real discomfort walking, I agreed to 14 radiation treatments for that and am glad I did. I also had a malignant salivary gland removed because it was throbbing.

Hope this helps. :)

Ellen

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What were some of your reasons for going forward or

opting out of treatment?

We were told that my mom needed treatment ASAP or else and that at IIIA she had a "potentially curable" disease and agressive was the only way to go even if the treatment killed her, otherwise the cancer would.

Did you ever consider opting out of treatment because of "statistics" or the standard of care your specific facility had to offer?

No.

Were you made aware of other treatment options and were you encouraged by that?

We were encouraged by survivor stories here.

Did the attitude of your dr. affect your decision making?

Yes, he scared us and was stern. He was really mad at my mom for being overweight and her diabetes was not best controlled. He asked why he should bother if she can't take care of herself. This was at the first visit. He was really harsh and put her in the hospital that day for testing and chemo the next. It was like boot camp and actually helped put us in our place.

Did you hear the news of your LC and treatment options from your GP or Onc?

GP did chest xray and said she needed ct-scan. Made appt with pulmo and was told by him.

What, if anything, changed your mind about your treatment options?

NOthning, knew it had to be done.

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