DCIS Studies and Info

Good one Viv, thanks!

Viv, thanks for checking, I am almost half way done with rads and doing fine so far, maybe starting to feel slightly tired, not my usual pumped-up self, but nothing bad. I was glad to hear that after your mast you didn't need to have more tx. I considered a mast to avoid rads, now I just have to deal with my rads decision, 3 more weeks...



You are er/pr-. Does it mean no hormone meds for you?



I agree with you about the docs divulging the minimum. It kills me. I am also an info nuts and read about anything I found on dcis, and rads. When it came to rads, they don't give you any upfront info on how to deal with it, nutrition, fluids, creams, stretching, etc. Only when I asked, and mostly I already knew because of all the info I got from these boards, did they finally gave me the stuff. Oh well, I guess there isn't enough time in their day to go into these details.

Hey Viv, just thought that I would tell you about this one person I know. A woman I know had IDC er/pr-, 5 years ago. Had mast and chemo, no tamoxifen. The poor lady just had a recurrence, in her chest wall, this one is er/pr+. Because it is in her chest wall, it is considered stage IV, but chest wall is not life threathening. We were discussing her case and she told me that now, she had wished she would have taken the tamox. Of course Viv, it may have come back anyway, who knows, but she felt that she didn't use all the weapons that she had access to.



I didn't expect to have to make all these decisions myself with this dx... It is all very nerve wracking, how do we know it is the best decision? If I had been braver I would have done everything for no recurrence, double mast. Now I getting zapped, who knows what that will bring in the future? a different cancer? a lung inflammation? grrr... just a little anxious as you can see.... I think that I will go on the rant thread,



Thanks for the support, I am over the hump today, 16 more to go...

Hi ladies - I was diagnosed on 2/1/08 with DCIS.  I had a lumpectomy on 2/29/08 and I have been undergoing radiation treatments at Boston Medical Center.  I was offered a clinical trial by my radiation oncologist due to my age (46) and the DCIS dx.  The clinical trial was for partial-radiation of the breast, not full.  The medical community is now looking for 3000 women (they currently have 2400) in the US for this trial.  The partial breast radiation treament was intensive; the radiation was twice/day, six hours a part, and would only be done for 5 days.  I declined the clinical trial for two reasons:  1) it would have been a logistical nightmare for me to commute into Boston 2x/day for the radiation, and 2) I wanted to go with the proven treatment.  My radiation therapist is a friend of mine and I spoke with her that night after being offered the clinical.  As a friend and as a medical professional, she said to not go with the clinical - go with the known and established treatment. 

Thanks, Viv...This study affirmed my decsion to have a lumpectomy, followed by rads....

Sandy

This is an incrediable thread with good information to those who are wrestling with dcis and how to hit it head on. I hope it always stays upfront in order for the newcomers to have available such information and links.

Hi DCIS ladies:
My head has been swimming with information since the day I was diagnosed on 9/29/09. I had never heard of DCIS before then! Since then I've had excision, re-excision and am now about 10 rads into a 28 rad treatment plan. I've pretty much stopped reading anything other than the postings on these boards because once I made the decision to do rads, which was torturous, it became too anxiety-provoking to read about new research, developments, alternatives, etc. In other words - it's too late for me to turn back now so I gotta finish it up with resolve. If I walk into that radiation room with any more doubt or questions than I already have.....I can't heal.

I don't think I will ever be fully convinced that I needed radiation - not until we all get that definitive report we would love to see....which DCIS becomes invasive and which does not. I long for the day when I can say, "yes, this saved my life and I am truly grateful". With all the controversy surrounding the new task force recommendations, I feel even more uncertain about things because I've been getting mammograms for 20 years and being led to think that I caused my own cancer.

For me, I like getting the practical, home-spun advice from women on these boards, especially those with DCIS and will wait until I am completely finished with rads to start reading more scientific literature, just for my own sanity!  Just my own way of coping.

Thanks to all of you for being here.