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Recently diagnosed with ...

Posted: Apr 30, 2012

... ductal carcinoma in situ. I have to have more surgery (not enough clean margin the first time), and supposed to have radiation and take tamoxifen. I am uneasy about the radation and tamoxifen. Anyone with any personal experience with this?

I was also approached about being in a study to have my tissue tested for HER2 and possbily take trastuzumab, which they normally don't do with DCIS (and are beginning research to see if this would be beneficial). I'm not sure what to think of this either, as there are some pretty unpleasant side effects listed, and it sounds like insurance companies sometimes refuse to pay for those who enter studies. Any input on this will be appreciated as well.

;

So sorry to hear - of your diagnosis

[ In Reply To ..]
...and wish you the very best.

I hope others have a lot to offer you in terms of encouragement and experience with this. I was just wondering, though, whether experimental protocols are done free of charge to the patient. After all, they provide a lot of publishable data (the lifesource of academia) to researchers and help to develop protocols for all future patients.

Best wishes.

Thanks :) - Shawna

[ In Reply To ..]
Thanks for the well wishes.

I have to read through the study paperwork again, as certain parts were a bit confusing. They may cover the drug they wish to give me (not sure), but I know it seemed to say some insurance companies would not cover the normal treatment then or any issues that arise from the study drug (which can cause things like congestive heart failure, lung problems, etc.).

Just doesn't seem fair to me - sm

[ In Reply To ..]
If insurance companies won't pay for any issues that arise from the study drug, doesn't it make you wonder why anyone would volunteer to be part of a study? So much progress in medicine is a direct result of trials like the one you're considering.

Not only do researchers benefit enormously from the data garnered from trials, but the drug companies also profit! Have you thought of asking the pharmaceutical company to foot the bill? Grrrrrrr

Sorry to vent. Again, I wish you a speedy recovery.

I responded to you - Di

[ In Reply To ..]
with a personal email.

Will send you ... - Shawna

[ In Reply To ..]
Thanks, Di. I will send you a return email when I have a bit more time to write. It seems I have a lot going on right now and want to take the time to write a few extra things to you. It will be sometime this week.

You might want to check your junk mailbox too, as your email ended up there in mine.

Thanks a lot for sharing! :)

cancer survivor here - oaf

[ In Reply To ..]
I had a lumpectomy, chemo and radiation! Actually you just have to figure it's a bump in the road in life. I don't know about taking tamoxifen though - I'd research, research and ask them questions out the yang yang. Also look into acupuncture and Chinese/herbal medicines to aid in the side effects with the radiation. There is a good website YME (I believe) and they have survivors who will talk to you. Go to support groups. You are stronger than you think! One day at a time - soon it will be in there rearview mirror!

me again! I the rearview mirror! - oaf

[ In Reply To ..]
DERR

To Di and ... - Shawna

[ In Reply To ..]
I just wanted to let you know I finally sent you a return email, Di. Again, thanks a bunch for sharing. Remember to check your junk mailbox, as that's where I found your message in mine. :)

Thanks to everyone else for responding on here too!

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