Suspected DCIS - could it be Invasive?

benny4663

Hi, I was diagnosed with fibroadenoma 4 years ago, had a core biopsy at year 1 and year 3, both clean. Last mammo showed second lump. Surgeon assured me both were fibros and had them removed 2 weeks ago to be sure. She was shocked when the results came back. Large original lump (size 3.6) was definitely a fibro but on the new small lump they found what they think is DCIS on the edge of the lump.

Now I am scheduled for second surgery in another two weeks to make sure that it is DCIS and has not spread. I have no idea what grade/stage they found, should I ask? Also I assume the second surgery is to take out more tissue and some lymph nodes?

 I have a few questions:

What are the chances if it showed DCIS that it could be invasive? Has anyone had similar situation that they can comment on?

Do you think the smaller lump could have been there longer but hidden by the fibro (there is mixed feedback on this)?

When will I actually be referred to an oncologist? Is that after absolute confirmation on DCIS VS Invasive? Is the oncologist the one that discusses treatment options?

I have no experience with this and my results were "suprising" - my surgeon's word.

My surgeon wants to follow up with Breast MRI which I understand generates a lot of false positives (lots of stuff looks bad but when it's biopsied it's nothing). I appreciate that she is being dilligent and would rather be safe than sorry. 

I'm trying to be positive but after the last round didn't work out as suspected I guess I'm less of a believer this time.

Anyone experienced something similar?

Beesie

benny, let me try to answer your questions.

What are the chances if it showed DCIS that it could be invasive? Has anyone had similar situation that they can comment on?  About 20% of needle biopsies that show DCIS end up with a diagnosis of invasive cancer, once the entire area of suspicion is removed.  But your case is different, since your lump has been removed and the DCIS was found on the side of one of the lumps. Is there even any more 'suspicious' tissue left in your breast based on imaging?  Was there DCIS in the margins (i.e. the DCIS went right up to the edge of the removed tissue, suggesting that there could still be more DCIS left in the breast)? Or is the next surgery just being done as a precaution?  Since your lump has actually been removed, I would think that the odds of finding anything more than DCIS is probably pretty slim. 

Do you think the smaller lump could have been there longer but hidden by the fibro (there is mixed feedback on this)?  One of the reasons why fibroadenomas are sometimes removed is because they are solid lumps and they can hide anything that's going on behind them.  Was the second lump directly behind the first one, in a location where it might have been blocked from view on a mammo?  Your surgeon should be able to answer that question. 

When will I actually be referred to an oncologist? Is that after absolute confirmation on DCIS VS Invasive? Is the oncologist the one that discusses treatment options?  You should be referred to an oncologist after you have the pathology report from the surgery.  You should see the oncologist whether you have DCIS or invasive cancer and yes, it's the oncologist who discusses any additional treatments that might be appropriate beyond surgery. 

I have no experience with this and my results were "suprising" - my surgeon's word.  It is surprising to find DCIS around a fibroadenoma but it's been known to happen. Fibroadenomas are made up of many of the same components as breast tissue so just as breast cancer (including DCIS) can develop within breast tissue, breast cancer can develop within or around a fibroadenoma.  It doesn't have anything to do with the fibroadenoma; it's just breast cancer developing and that's where it happened to develop.  

The breast MRI is a good idea.  In my case, and many others, it helped clarify the size of the area of DCIS.  My area of DCIS was much larger than what appeared on the mammo. Because a larger suspicious area showed up on the MRI, this helped my surgeon prepare for surgery.  Hopefully your MRI shows nothing of concern, and then hopefully this is confirmed when you have surgery.  

JamieB86

Sorry you're dealing with this.  Pure DCIS is not invasive and is always stage 0.  Sometimes, there can be a mirco-invasion not found until surgery and that would change the staging.  Beesie is our resident DCIS expert.  She has many posts that go into much more detail.  Her wealth of information has helped many women on these boards.  Search for her posts. I'm sure you'll get many of your questions answered.

I had pure DCIS and I was referred to an oncologist since it is cancer, just not invasive.  I saw her after my surgery to discuss tamoxifen therapy.

Don't be afraid to ask questions. Sometimes the doctors forget we don't know everything they do.  Write the questions down so you don't forget them, and take someone with you to help listen.  It's all so overwhelming its easy to miss some info.

Best wishes

(told you Beesie's the go to girl!  and fast too)

Sandyflats

I just want to wish you well. I know that this is a very stressful time.

What I have learned is that there is a spectrum of abnormality with cells and it's hard to tell the difference sometimes between low grade DCIS and some other pre-malignant cells that aren't  DCIS like atypical ductal hyperplasia.

Here is a really good video of this. It's by a breast cancer surgeon and it's intended for health care providers, but it's still easy to understand for patients. It's about treatment options for premalignant lesions and DCIS from a surgeon's perspective -- why there is so much controversy, things to consider, what these things are, etc. I think it's a great video for patients, too. I've pasted this link in as plain text, but you can cut and paste it into your browser. It might help you to understand why your biopsy results are so vague at this point (and what might come next)

http://learn.phsa.ca/BCCA/HCP/Rounds2011apr8/BCCA_HCP_Rounds_8apr2011_flv_loader.html 

 

april485

Sandyflats, the link is not working...tried to view it and it said error

Infobabe

I would like to add to everyone else, start asking for copies of all your pathology reports.  

If you don't have them, call and get them.  They are yours by law and the doctors often give them without being asked and they will not be offended.  

Eventually, you will not only understand them, you will know them by heart.

Janet456

Snap! - my DCIS was also found on the edge of a large benign lump.  Best wishes for your upcoming surgery x

benny4663

Thanks everyone for your responses. My understanding is that because the DCIS was found along the very edge of the smaller lump there is concern that it may be further into the breast tissue so they need to take more tissue to determine if there is more and if it has spread into the lymph nodes.

I didn't know that I could ask for my pathology report is that just in the States or is that the same law in Canada?

My second surgery is scheduled for Sep 10 so I guess all I can do is just wait and hope for the best.

 Janet 456 ... did you have a second surgery like I will be? Did they find any more in the area around?

Lou10

Benny, my thoughts are with you. I live in BC and while there are some differences in access to records in different provinces, I would be very surprised if you aren't entitled to copies of your medical records anywhere in Canada. There are different processes here depending on where the records originate (e.g., a hospital vs. a doctor's office). Sometimes you have to fill out a form. But it's not a big deal and I would strongly advise you to request copies of everything.

I have a medical oncologist who deals largely with medication-related treatment issues (chemo, hormone therapy) and a radiation oncologist, who not only dealt with my radiation treatment but is taking the lead in my follow-up.  

Take good care of yourself!

benny4663

Thanks Lou10 ... I live in BC also (Vancouver). I'll definitely follow up on my reports and clarify exactly what my next procedure entails.