Do you research or not?

I have always done research with Dr. Google.  i still do; whenever i have a question about something i google.  i have bursitis on my left elbow; (same side as breast cancer) and i googled to find out if there were any cases of mets to elbow. i think i did it a lot more in the beginning and early stages post treatment...etc. but i still look stuff up. i think now for me it is more about being really educated about my disease and also to find out any new research...etc.  i guess also, i feel more in control when i do research so when i go and talk with my oncologist i can ask intelligent questions.

 my experience is that gaining information can sometimes stimulate anxiety and at other times decrease it.  but, i know i will still search with dr google,

I also research.  I don't always like what I read, either, but I'd rather have facts.  Like you have said, my mood seems to dictate how objective and rational I will be about what I read.  I've made some decisions based on my own research.  I've also found that I am able to go to doctor's visits and feel informed.  I take my list of most pressing questions and can interpret the answers I get right away. That way the time I'm with the doctor can be well spent.  I know there are times I research too much, though, and that's not good.

Kerry - I jump ahead, always like to know what is coming next.  Am doing some research now on Zometa - looking more and more promising but do I want to fight to get it more than every 6 months? hmmmm.

YES.

I did not do research while going through treatment. It was when the chemo haze lifted that I started. After treatment, my onc being aggressive, put me on Lupron with Tamox and Zometa.

I read up on all of it, and realized my onc was recommending the right treatments for me.

I keep track every year the findings that come out of San Antonio because even though I love my onc and trust him with my treatment.....I can not expect him to remember little ol me when it comes to treatment issues. If I dont keep up...who will? I have to be my own advocate.

Good example, I ordered the CYP2D6 / Tamox Metabolizing test 18 months after being on Tamox. My onc isnt bought on the test yet, and told me to save my money. Well....after doing research MYSELF, I found out that this test IS important and I SHOULD do it. So, I ordered it. Told my onc, he said ok....lets see what it says.

Results: POOR METABOLIZER. I see my onc on Wednesday to go over my options. Likely staying on Lupron and an AI.

 That means my treatment will change. I have potentially saved my own butt from a local/distant recurrence of BC.

You know, if not for information I have picked up here on these boards, my treatment would be different that what it has been too - and who knows which thing may be the thing that saves you - maybe Zometa, maybe the ooph, maybe exercise, who knows. Maybe none of these things would have made a difference. But I feel like I have done everything that is possible to do. I wish there was more I could do actually.

You know, when I visited my onc on Dec 16th, he did kind of changed his tune regarding the CYP2D6 test. He did admitt that he was "hearing more about it. But waiting to receive some more evidence."

Im hoping that my result will push him in the direction of mentioning the test to his patients. Since in Canada, it isnt approved yet, a patient can choose whether they feel its important to them or not and pay out of pocket.

Seems like I was the one to set the example at being diagnosed at 30....and not being able to metabolize Tamox. Go figure.

mamita,

This is the first Ive heard of a pill OTHER than Tamoxifen. Is it for pre menopasul woman? I must admitt, it would be kinda nice to have another choice besides Tamoxifen for us girls who dont metabolize it effectivly!

I paid $300.00 for the test. Had my results....POOR. Ill be switching to an AI after my surgery.

I'm a weenie when it comes to research, probably because I'm at the "head of the class" when it comes to Stage 3. I'm probably really 3c but have studiously avoided my path report since first reading it. I have learned an immense amount from these boards and my younger sister who had bc 4 years before me.

So here's a potentially stupid question.  I was in perimenopause prior to dx and will go for surgery after radiation to remove ovaries.  Where does that put me for Tamoxifen?  Will I be considered post menopausal?  My sister had a gene test and she is a poor metabolizer of Tamxifen so I suppose I may be as well.

clarice...once your ovaries are removed, you will likely go directly to an AI. There's no reason to do Tamoxifen once they are out of commission.

Thanks Kerry and Nancy.



That's interesting that your onc started you on Tamoxifen during rads. Mine hasn't mentioned it. I'll have to check up on that before I start rads in March.

i don't research.. it's too scary for me.  I do read what other people find out and do research the best way to eat.

I know my husband has a Google alert on Breast Cancer research, and he says he is amazed at how much comes. There is a lot going on. Hopefully someone can keep finding stuff that will keep us around for a lot longer! 

Also regarding 5 to 10 years on the AI's, there is currently a study going on to see if 10 years of Arimidex (or maybe just any AI I am not sure) is better than 5 years. I don't know what it is called, but my Onc said by the time my 5 years is up, we will know whether or not I should continue, switch, whatever.  I think something just came out (correct me if I am wrong, I just remember I came across it recently) that said 10 years Tamox was better than 5 - in fact if I remember, for node negative BC, the DFS after 10 years on Tamox was 100%. Impressive!

When I was initially diagnosed as Triple Negative I did a lot of reasearch, but not so much anymore.  Every now and then when I see an article or something worth researching I'll look it up.  I do stay away from statistics and anything that doesn't seem to be from a legitimate organization.  From what I've found in my research my onc is on the same path as what the "experts" and new findings say as far as treatment goes.