Second opinion--more DCIS---is this normal?

clarecy

I just met my second opinion doctor today in sloan-kettering. She tole me that after reviewing my pathology slides, they thought I actually have more DCIS (in one area from 3 slides to 8 slides; in another area from "just ADH" to "2 mm DCIS"). She said that it's about how to draw the line to distinguish between ADH and DCIS, and according to their standard, those "controversial" ones should be regarded as DCIS. 

I just wonder if it's normal? With this result, it will be more difficult for me to have lumpectory. 

P.S. The grade has not changed....still low grade.....which makes me relax a little bit

ballet12

Hi Clarecy, I've been thinking about you.  I'm so glad that you finally got to see the surgeon at Sloan-Kettering for a second opinion.  She will absolutely tell you if it's impossible to have a lumpectomy.  Those decisions are made based on the estimated amount of DCIS and how it's laid out (multifocal or multicentric), as well as the relative size of the breast, whether there will be some deformity or not, as well as how much risk you want to take with regard to possible deformity. If the DCIS is located in several different areas, it may be hard to do a lumpectomy.  She has seen the slides.  She has seen you.  She'll be able to tell you if its possible and she'll work with you if it is. Is she sending you for an MRI?  That might clarify things further.  Obviously, I'm biased since she is my surgeon, but she's one of the best out there. Keep us informed.

ballet12

Adding a couple of more comments.  About the "gray area" between ADH and DCIS, it can be difficult to discriminate beteen the two sometimes (especially ADH vs low grade DCIS).  I had "only" ADH found in my initial stereotactic biopsy.  Six pathologists reviewed it to be sure it was "only" ADH, and by the way MSKCC concurred.  In my larger excisional biopsy, it was found to be all DCIS, and again MSKCC agreed.  So, if they aren't agreeing, they must be seeing things a little differently.  My DCIS was high grade, with necrosis, so it probably looked very different from ADH. 

About seeing more DCIS than originally seen, again, that's possible also. 

At some point, you have to just trust the experts to make these calls. 

Best of luck.

clarecy

I was just about to PM you. Dr. Van Zee is really nice!

Well, at this stage, she just tole me their new diagnose. She showed me the general details of lumpectomy and mastectomy. She said she would not recommend radiation to me since I'm too young. She also said she's unsure if tamoxifen will work for me since I'm too young.......If without radiation and tamoxifen, she's concerned about the recurrence rate (26%-40%). However, she didn't explicitly tell me I "should" have lumpectomy or mastectomy.  She just said I should do MRI, genetic testing first, and also talk to plastic surgeon about possibility of partial reconstruction (I mentioned that) and oncologist (if I could use tamoxifen or not). I should make final decision based on as much information as possible, and "we should not rush".

ballet12

I hope the visit made you feel a little bit better, maybe, anyway. She is really taking all the factors into consideration, including the long (and short-term) effects of radiation for low grade DCIS on a young person.  At the same time, your recurrence risk may be higher because of your age and other factors.  Glad you are taking it slow and getting all of the information before making a decision.  About the plastic surgery consult, use that as an opportunity to explore both the partial reconstruction and full reconstruction, in the event that you choose or need to have a mastectomy (not saying that will happen.)

jessica749

I love how she has told you  "we should not rush" and laid out methodically all the things you need to look into before arriving at decision.  Dr. Van Zee is just the best.  Obviously any/all of these things may force your hand (i.e if genetic testing shows something, or the MRI shows areas that may indicate only a mast. can be done rather than lump, etc.).  Know that she has tremendous experience, has seen alot over the YEARS (along with performed thousands of surgeries).  Maybe when you have all the information, she will be more willing to tell you what she thinks you should do OR at the very least she will lay out how she sees the risks/benefits of whatever choices are available. I believe when she has all the information, she will tell you what she recommends, surgically.

I just would tell you to consider very seriously everything she tells you. She is one of the smartest people / doctors I have ever met in my life.  You mention she was your 'second opinion' but if possible I'd try and change her to my first! (main doctor!)