Newly diagnosed DCIS

cycle-path, I'm sorry that you've had to join us, but I'm glad that you found us! 

It sounds as though you have a really good handle on your diagnosis. 

To your questions, yes, from the description it appears that your DCIS is mostly grade 1 and 2 but there is some grade 3.  It's not uncommon to have more than one grade of DCIS. 

Necrosis represents an area of dead cells.  "When cancer cells grow quickly, some cells don't get enough nourishment. These starved cells can die off, leaving areas of necrosis."  So generally if necrosis is present, the cancer is considered to be more aggressive.  Grade 3 DCIS often has a lot of necrosis; grade 2 sometimes has a small amount.   http://www.breastcancer.org/symptoms/types/dcis/diagnosis.jsp 

As for the size of your area of DCIS, it does seem that your doctor is taking into account what was seen on the MRI.  MRIs do tend to be more accurate than mammograms at identifying the full area of DCIS.  However MRIs can be wrong so it's possible that your area of DCIS could be just the 1cm that was seen on your mammo, or it could be the 2cm that was seen on your MRI.  Until it's all removed, there is no way to know for sure. 

And finally, yes, Stage 0 Tis is the definition of pure DCIS, without the presence of any invasion.  Here again, final staging can't be done until all your affected breast tissue is analysed under a microscope.  In about 80% of cases, the preliminary staging is confirmed but in about 20% of cases, some invasive cancer is found in the final pathology and the staging is therefore changed.  Hopefully that won't be the case for you.

I don't know why you would get a temporary catheter during surgery and the actual one for radiation later.  I didn't have radiation (I had a mastectomy because I had too much DCIS in a small breast) so I don't know the process.  Maybe that's what's always done.  I'm sure that someone else can answer this.

Radiation is optional.  However it's almost always recommended after a lumpectomy.  So that's where you have to make your decision, based on your risk level and your tolerance of risk.  Certainly if you have very good margins your recurrence risk will be lower; whether it will be low enough for you to be willing to forego radiation is something that only you can decide.  But until you have the surgery and you know more about your tumor - whether it is all DCIS, what the actual size of the tumor is, whether there is any more grade 3 or if there is the presence of comedonecrosis, whether there is a single tumor or if there are several areas of DCIS separated by a few millimeters, etc. - it really isn't possible to guess what your recurrence risk will be.

Cycle-path,

You might want to consider getting a 2nd pathology opinion after your lumpectomy, before you begin treatments . Pathologists disagree up to 25 percent of the time. Since you can have radiation only once, it is important that your treatment choices are based on good solid pathology. You will also want to know what your recurrence rate is with and without radiation.



I consulted with Dr. Michael Lagios, a world renowned DCIS expert and pathologist, who has a consulting service that anyone can use. When they said I has positive margins after my lumpectomy, he disagreed with my local pathologists and estimated my recurrence risk at only 4 percent. With such a low rate of recurrence, it made sense to me to omit radiation, as the 50 percent risk recurrence reduction did not seem worth it to me.



Since DCIS is non-invasive you don't need to rush into anything. Take your time and make sure you are comfortable with whatever treatment options you choose.



Please feel free to send me a PM or check my website if you have questions or think any part of my story would help you:



https://sites.google.com/site/dciswithoutrads/home



Hugs,

Sandie