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advice for newcommers


lilyjohn

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If you or a loved one have just been diagnosed I have some infomation or I should say advice for you. Please read the following paper I have written. If anyone has anything to add that I have forgotten please feel free to do so. Lillian Questions you should ask and things you should know if you have cancer.

1. If it is lung cancer what kind is it small cell or none small cell?

2. If non small cell which one do I have ?

(there are 3 kinds)

3. What stage is it?

4. What treatment do you propose?

5. What other doctors will be working with you?

6.What other treatments are available not just with you?

7. Can it be treated with radiation or chemotherapy? If they say no ask questions

8. Do you have the means to treat the cancer with radiation or chemotherapy?

9. What is the size of my turmor or tumors if there are more how many?

10. How much say do I have in my treatment?

11.What were the results of the tumor marker test? Ask for numbers.

12. What do you plan to do for the issue of anxiety?

13. What is the median 5 year survival rate for this kind of cancer?

14. What is the median 5 year survival rate among your patients?

15. What is the median 1 year survival rate for this kind of cancer?

16. What is the median 1 year survival rate among your patients?

17. Do you mind if I get a second openion?

If they refuse to answer your questions or do not want you to get a second openion it is time to see someone else. If your doctor does not take the time to answer your questions and can not be open with you you will not trust him. Trust is important just like hope in your survival and comfort.

Things you should know that I wish I had known in time.

1.Always take notes. Either in writing or with a small tape recorder. the recorder is best because you have their voices and you can make sure the time and date are on it. If you feel that you can not do that have someone with you who can. You should always have someone with you if possible anyway. Record the date. The name of the doctor and his anwers to your questions. Keep track of blood test and other test results encluding the numbers in the blood tests. Have names of all medications given, the reason for giving them and who gave them. If you go to the hospital for any reason this is very important. Make sure you have the name of anyone that has any thing to do with your treatment. Also the time of day that it is done. Make your notes openly. There is less chance that anything will be done not to your advantage if people know that you have their name.

2. Know your patient's rights and demand them. If you have any concern about one of your rights seek legal advice either from the patient advocate or someone else. Especially if you feel one of your rights has been denied or abused.

3. No one has the right to force you to sign a DNR. That is your choice and your right to refuse or not. If you are harassed about it report it as soon as possible. Hopefully you will have a witness tho in most cases if someone is going to do that they will make sure that you don't. If you do choose to sign a DNR make it spacific. State exactly what circumstances you would want it used and what circumstances you would not want it used.

4. When ever you are given a medication make sure you know what it is and what it is for. Never let anyone give you pain medication for anxiety. It only makes it worse. Most are addictive and have terrible side effects.

5. Morphine is great for pain. People in pain can take very large doses without harm. If there is no pain morphine can and does kill. No one can force you to take any medication that you do not want.

6. When given a medication get all of the information that you can find. If possible get on the web and look it up. Don't only read but study the information. Make sure you learn about side effects and the signs of overdose as well as interactions and warnings about other medications. If you take something and it feels like something is wrong it probably is. Don't let anyone tell you otherwise. You will know.

7. Get on the web and research the kind of cancer you have. Knowledge can be a powerfull tool. Join message boards. Learn about the treatments that others have tried and how they have worked. There is no other place to get so much information.

8. Never let anyone take hope away from you. It is the most valuable thing you have to fight cancer. If a doctor starts treating you like the disease or like a, dead man walking, find another doctor. That one can do no more for you.

9 one final thing get copies of ALL test results!!!

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Thank you Cindy for your reply. That is very smart to take notes. There is one more thing I would like to add that may help too.

Call your states Department of Health and Social Services. Ask them for a number where you can call and find out about any complaints filed against the doctor you are considering. They should give you a list of those complaints if there are any. The list should contain all claims filed against the doctor and the outcome. Even if none were ever acted on or if the were acted on and not fault found they will give you a pretty good picture.

I have learned that their is so much red tape involved in filing a claim that most people would just let it go rather than go through the time and frustration envolved. If a complaint has been filed more than likely the insident took place. It is just very hard to prove anything against a doctor and most cases are not even investigated let alone fault found. Ask if they will send you a printout of the charges that were made against him.

I have a list of claims filed and the dates against Jump. Today I am going to call and ask for a print out. Hopefuly I will get one. I want to see exactly how similar those claims are to mine. As if February he had 6 claims filed against him sense 1986. They were 1Verbal abuse(the same as I claimed) 2.not listed 3sanitary conditions. 4.unreasonable risk(again the same as I claimed) 5. not listed because it was never investigated. 6. sexual misconduct. I have little doubt that the claims were all true. It is just so hard to get the medical board to actually do something.

In Washington the number to call is360-236-4815.

Good luck I hope this helps someone. Lillian

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*snicker*

Number 3 is good - when I went to the hospital at the very BEGINNING of all this for my biopsy (in other words they weren't even sure if it was cancer yet or not), the doctor PLUS two different nurses asked me if I had a DNR (Do Not Recusitate) - and one of them even strongly suggested that I get one.

I looked at her and said quite firmly "I'm only 41 years old - if I stop breathing, you'd BETTER recusiate me!"

The nerve,

SandyS

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