LETTER TO OUR DOCTORS

[ernrol]

I would like to put together a letter that can be taken to our doctors that will tell them what we would like to see as survivors, from our doctors regarding cancer.

If you are a survivor post how you like to be treated or what would have improved your treatment. If you are a caregiver and know of something that your care receiver has expressed to you, then post it. It is important that these thoughts are from survivors.

I firmly believe the way we are treated by our doctors in regard to these matters can have an effect on the outcome on our battle with cancer.

When we get all the items listed I plan to put them all together and post them as an open letter to our doctors. Maybe someone with a better command of the English language could then edit it for us or you can edit it to suit yourself.

I will start the list with a few of my own.

1. Prognosis: Say something like this. I don’t give estimates on how long anyone has to live. All of the information that makes up statistics is based on history, and we are looking at the future. There are many new treatments for cancer. More and more people are surviving each day and there is no reason that you can’t be one of them.

2. Test/scan results: Have test and scan results as close to test as possible. I had a Hybrid CT/PET scan in the morning and had the results in the afternoon. It can be done.

The waiting between test/scans and getting the results from the doctor cause unneeded stress.

3. Side effects: Don’t tell a patient that he will get real sick from his or hers treatment. I think one of the reasons patients get sick is they are told that they will and expect it.

Say: With today’s new drugs many people experience little side effects and if you do have trouble we have many things we can try to help. You may not even loose your hair.

4. Encourage second opinions

5. Supplements and Herbs: When a patient asks about a supplement or herb, give it some thought, not a blanket answer that I don’t want you taking anything. If the item will do no harm, let them take it unless you can prove that it does no good. If they could take it except for a period of time around the chemo, let them take it at other times.

These are a few to get us started Add yours and I will put them all together and attach every survivors name to the bottom who willing to have their name on it. I will take it to my doctors and others can too. Just tell your doctor that this was some of the strong feelings posted on a survivor’s web site.

Stay positive,

Ernie

[karen335]

1.Since I am in remission/NED/NERD what is the protocal for follow up appointments. How often should I have scans (CT,PET,MRI etc.)...Who requests these scans/tests?

2.I need support/have questions, who do I go to: GP,Onc,or ???

As I think of more, I will post.

Good subject Ernie,

Thank You

[tdbones]

Well I'm new to this but the way that I was informed of having Lung cancer was confusion for me.

I was just told that I had an mass that was found on an chest Xray. I went in to see my doctor due to an cough that had.

1. Told that I had an mass, no idea what that would mean,

2. lead to think that an procedure would allow me to know what that mass was.

3. I think an consulation need to be early, and more information given to patients, about what to expect form testing, xray, labs, CT- Scan.

4, Why is the last appt with an Oncologist, and what to expect not explain as to what he does. what role do he play in my treatment, and how do people expect me to trust this stranger in my life.

Terry

[blaze100]

All 5 are excellent points Ernie. I think point number 1 is the biggest item.

I just passed 6 years a few months ago, and my lung doc said for the first time, "it's starting to look more and more positive for you". Those are the first encouraging words he's ever said or any other doc has ever said to me.

Barb