Margins not clean- DCIS/What do I do?

lxcarr

I'm so worried. After treatment with surgery, chemo and 36 radiation rounds I pull the pathology and find that my margins were not clean an contained DCIS. I was told by doctor that I had close margin but pathology says otherwise. Doctor also said my cancer was very close to chest muscle. I guess the doctors reviewed and decided do on treatnent

LisaAlissa

Hi Lidia!

I don't blame you for worrying. When you see reports that seem to say something different than what your doc told you...well anyone would worry.

Your ability to trust your team seems like it would have to be compromised after your discovery. But you should give them an opportunity to explain their thinking. And you should let them know that you want to be involved in those sorts of decisions going forward.

I'd be making an appointment (or two--maybe time for a second opinion from a different center/hospital?). You've been seeing a lot of docs. At a guess, surgeon, radiation oncologist & medical oncologist at a minimum. Who told you that you had a "close margin?" I'd start with them, with your pathology report in hand, and ask them to explain their thinking. Describing it as "close," but not suggesting more surgery to get a truly clean margin.

Second, are you comfortable with your MO? I'd have more or less the same conversation with them. It's possible that they felt with the chemo-to-come that the DCIS would get cleaned up with that. (I really have no idea!)

And you may want to get a second opinion and find out if another team would recommend additional treatment (more surgery, perhaps?) at this point.

Finally, it sounds as if you may not have been collecting all of your paperwork/imaging--I'd be worried that there was something else there too. Here's what I'd do:

Start making a list of all of the tests/procedures/office visits you've had. You can use your calendar to create this list.

Chances are, this all started with a mammogram (I didn't look back over your posts...). So get a copy of the report sent to the doc who ordered the mammogram (you don't want the patient letter, you want the report), as well as a CD of the actual images.

Same thing for each ultrasound or MRI or any other imaging mode.

For procedures like biopsies or surgeries, there will be both (a) a procedure report, telling what was done, and (b) a pathology report with details on any tissue that was removed. You want both of them.

For blood tests, get copies of those too...when you visit a new doc, you can sometimes avoid yet more blood tests if you can produce them most recent. However even if they want new tests, being able to see how results for the same tests have varied over time can be valuable information.

Finally, each time you've seen a doc in his/her office, they've written an office visit note (or should have!). Ask for copies of those too.

Then read through them all, and get copies of anything that seems to have been missed. And make a list of questions you have about what you see.

I'm so sorry that you've had this hit to the trust you should be able to have in your docs.

HTH,

LisaAlissa