Nov 24, 2022 08:49AM purplecat wrote:
Hi Starsnow, I'm so sorry you got these results, and in a way and at a time when you have to wait so long for someone who can advise you on them. Those patient portals are a blessing and a curse. It's great to be able to see results right away, but when we don't really know what any of it means, we can only imagine the worst for hours and days until someone can give us real information specific to our own situation. I don't know what's ahead for you, but I know you are going to feel better after you have answers from the surgeon. I'm sorry it's such a long wait.
As for DCIS, it looks like you've found some good information, so I will just share my experience. Your treatment maybe different, but if it eases your mind at all to have some idea what might be ahead, here's my story:
I had something show up on a mammogram and had a core needle biopsy, where they stuck in a hollow needle and pulled out several clumps of cells that turned out to contain DCIS. They called to tell me in a very reassuring phone call. Basically, no one ever dies from DCIS, they said. We need to get it out because sometimes it can develop into invasive cancer, and we will treat it with radiation and hormone blockers just in case any more is trying to develo. But there's also some thought that in some cases it's OK to just leave it alone, because apparently they find a fair amount of DCIS in autopsies of women who lived normal lifespans and died of normal causes! My doctor even mentioned studies where people opt not to treat it at all, just watch it carefully, because they would like to figure out which types can be safely left alone so as not to subject women to treatments and side effects they don’t actually need.
My case turned out to be a little worse than that. I had surgery to remove the tumor, and the final pathology found a small bit of invasive cancer. Apparently that can happen in needle biopsies, because the needle just pulls out samples and not the whole tumor. I had to go back for a second surgery to remove and check lymph nodes. But they were clear, and with one thing and another I ended up at stage 1a instead of stage 0. I had exactly the same treatment I would have had with just DCIS - surgery, radiation, hormone blockers - and four years later I have had some trouble with scarring but no sign of recurrence.
In your case, it sounds like you've already had the entire tumor removed and thoroughly inspected, so you won't have to wonder if a needle biopsy missed anything. Did you have a MRI as well? If so, and if this is the only thing that was spotted, and they didn't find any invasive cancer in this tumor but just DCIS, then you may very well now be cancer free! With a sore boob, but cancer free! I was told that DCIS is never treated with chemo, so unless something has changed since my diagnosis, that shouldn't be on your treatment plan. Radiation and hormone therapy are often part of the picture for a DCIS patient, but depending on your specifics you may be able to skip one or both and just be done. I hope this is the case for you, but if not, it's do-able. Not fun, but do-able.
Again, I’d never want to predict what your treatment will be, but maybe it helps to have one story of a person who heard she had DCIS and is now OK.
As for support, these boards have been great but have been sort of quiet lately. And right now a lot of people are probably taking a break for the holidays. You do need support, and lately I’ve found some of that through an online Gilda’s Club group. Depending on where you live, you might also be able to attend one in person. Your surgeon may be able to put you on to local or online options as well. It’s so helpful to be able to to share experiences and feel less alone.
Hang in there! I know how hard it is to wait