Questions to Ask Doctor

Flywithme337

I POSTED THIS IN 'Just Diagnosed'  I just wanted everyone in the ILC forum to have some background on the situation.  After reading this, does anyone have a list of questions she can ask her doctor?  Thanks!!! 

 My mom had been having problems with her breast for about a year (she only mentioned it to me a month ago).  It got progressively worse and when she finally told me, she went to the doctor and he immediately put her in the hospital.  She was there for 4 days.  She had blood work, a CAT scan, breast biopsy, bone scan, mamogram and sonogram.  I spoke to the doctor while she was in the hospital and he said the following:

It is most likely breast cancer but probably not too advanced.  She will have to have chemo and then a mastectomy.  I did several needle biopsies (appx 1mm incision) and took 1/4 inch of tissue and nipple.  CAT scan and bone scan came back negative. 

 He called last night and said it is definitely cancer.  Most likely Stage 2-3.  Needs to see oncologist ASAP for chemo and most likely a mastectomy.  He said in my mom's case they want to do chemo first.  (WHY?) 

 Not sure what Oncotypedx and HER2 is (I saw other people mentioning that.)  I guess these are tests that need to be eventually done or she will find out when she speaks to oncologist?  This is what the path report said::::

 Specimens: (a) right breast core biopsy and (b) right breast skin bx

 Diagnosis: (a) invasive lobular carcinoma, pleomorphic variant, involving skin of breast.

                 (b) invasive lobular carcinoma, pleomorphic variant involving skin of breast.  Blood vessel and lymphatic vessel invasion are not identified.  Skin margins of excision are involved by invasive lobular carcinoma.

 Synoptic Summary: Specimen size - 7 fragments, greatest dimension 1.3 cm, additional dimensions 0.8cm x 0.7; invasive component (same dimensions), cores involved by invasive component: 7.  Percent involved 100%.

Nottingham Grade: II

Tubule Formation: 3

Nuclear Pleomorphism: 3

Mitotic Count: 40x obj field (0238 mm2): 1

Nottingham Total Score: 6-7

Carcinoma in SITU (CIS): Absent

Microcalcifications: Not identified

Lymphatic invastion: Absent

Venous invasion: Absent

  =  Pleomoprhic variant of lobular carcinoma, invasive, is present in both the skin and the core biopsy specimens.

 I am so happy I came upon this site.  A friend recovering from BC recommended it.  Thanks to anyone who can shed some light.  Im sure the beginning is always the hardest.  I've been doing so much research, I expect to be a pro at this pretty soon!!! 

nash

Hi, Fly. I've got PILC, too. Someone can correct me if I'm wrong, but I think any time there's skin involvement, the staging is automatically IIIB. Was the tumor very close to the surface? You mom's tumor really isn't that big at 1.3 cm.

Generally chemo is done first to shrink the tumor down so a lumpectomy can be done instead of a mastectomy. But if your mom has skin involvement, they'll have to do a mastectomy anyhow, so I'm not sure why they're recommending neoadjuvant chemo. That's something to get a couple of onc opinions on.

HER2 is a protein that is sometimes overexpressed in breast cancer tumors, making the tumor more aggressive. ILC is almost always HER2 negative, but the pleomorphic variant that your mom has is occasionally HER2+. Mine was not, BTW. If by some weird chance her HER2 testing comes back positive  (there are two lab methods--ICH and FISH--so you'll probably end up seeing both on reports when you get them), then there is a targeted therapy called Herceptin that can be added to the chemo to specifically stop the HER2 overexpression. 

Oncotype DX is a test that is run on the tumor sample after surgery to look at the DNA of the tumor. You can read about it at www.oncotypedx.com. It is used for ER/PR positive tumors where there is no node involvement. You will need to find our your mom's ER/PR status. ILC is almost always hormone positive, but sometimes there are exceptions, and typically those exceptions would be in the pleomorphic variant. Back to Oncotype--the test measure how hormone responsive the tumor is, meaning how well would it respond to hormone therapy like Tamoxifen or Arimidex, vs. responding to chemo. The test gives a score--low, intermediate, high--with a % chance of recurrence.  A low recurrence score--under 18--means that the tumor should be very hormone responsive, and that chemo wouldn't help much. A high score over 30, I think it is, means the opposite, and that chemo would help a lot. Most women seem to score in the intermediate range of 18-30, which is a grey area.

My Oncotype with my PILC was 18, which was just barely in the intermediate range, but was somewhat high for an ILC tumor. My tumor was also only moderately ER/PR positive. We're seeing a lot of low scores (9-11 range) for ILC girls on this board,  b/c their tumors are highly ER/PR expressive and they'll benefit the most from hormone therapy. 

Hope that helps a little. And yes, the beginning is the hardest, and yes, you will be a pro at this really fast! Your mom is lucky to have you.

IllinoisNancy

Hi Fly,

Nash gave excellent information.  I'm one of the PILC girls who is ER++ PR-.  I had a lumpectomy followed by 33 radiation treatments and now on Tamoxifen. My Onco score was 9. I just passed my 2 year mark with NED.  Good luck to you and your Mom.

nash

Thanks, Nancy.

Fly, wanted to add--Oncotype is clinical validated for Stage I and II node negative cancers. I don't know if your mom having skin involvement, and hence being Stage IIIB, completely precludes use of the test in your mom's case. It probably will. That will be another good question for the oncologist, though.