recent diagnosis, TNBC ?

I have been reading various posting for the past couple of weeks, and thought I would join in. I was recently diagnosed with IDC, and had not heard of TNBC until my MO told me that she considered my diagnosis to be that. I guess I am more confused than anything else right now. She said because I am weakly positive for Estrogen (2% +) and Progesterone (5% +) and HER2 negative, that's why she says it is TNBC. I am just wondering if there are others out there that are similar to me? She ordered the Oncotype DX test, which it is my understanding that is for being ER and PR positive. It sounds like my situation is kind of in a grey area, and she is trying to determine if chemo would help me or not. I know that I will need radiation, but that would be after chemo, if I need chemo. I have an appointment with the MO on Monday, and will have the results of the test then. I am anxious to start something, since it has been a month sine my BCS. Any thoughts on this is very much appreciated.

Also, wanted to add that it sounds like your doctor has ordered that Oncotype DX because as you said, it sounds like you are in a gray area.  One of my oncs wanted to order one for me even though I was clearly TNBC.   

CollenMary,

Glad you found this site. You will find many caring and knowledgeable women and men here.

The following may or may not be helpful if you are considering a 2nd opinion.
A 2nd opinion would be reasonable given the 2% ER and 5% PR report.
Maybe also consider a 2nd opinion pathology consult.
1. Check if there is a NCCN (National Comprehensive Cancer Network) Cancer Center      
    https://www.nccn.org/members/network.asp       
    in your area.
2. Check if there is a NCI (National Cancer Institute) Cancer Center in your area.
     For appointments at a NCI Center, ask for the TNBC oncologist.
       http://www.cancer.gov/researchandfunding/extramural/cancercenters      
        http://www.cancer.gov/researchandfunding/extramural/cancercenters/find-a-cancer-center
http://forum.tnbcfoundation.org/oncologist-recommendations-from-members_topic5721_page3.html
and the TNBC Foundation Scientific Advisory Board
http://www.tnbcfoundation.org/ourpeople.htm

Since you are in Arizona, here is the link for th Arizona NCI Cancer Center:
http://azcc.arizona.edu/patients/clinic/breastcancer

If you are in the part of Arizona (and your insurance allows) that a consult in California would be
possible, you may like to consider some of the TNBC oncologists that have been mentioned on the
forums:
        Stanford Cancer Center               Stanford, CA
        -   Mark Pegram, MD       
        http://med.stanford.edu/profiles/frdActionServlet?choiceId=facProfile&fid=32170
        http://cancer.stanford.edu/breastcancer/
        -    George W.Sledge,Jr., MD       
        http://www.tnbcfoundation.org/ourpeople_sledge.htm
        http://med.stanford.edu/profiles/medicine/frdActionServlet?choiceId=facProfile&fid=38346
       
        UCSF Helen Diller Family Comprehensive Cancer Center        San Francisco     CA
        Hope Rugo, MD
        http://www.ucsfhealth.org/cgi-bin/expertDetail.cgi?doctorid=1085
        http://cancer.ucsf.edu/people/profiles/rugo_hope.3648              

THere was a prior thread about when there is some ER expression in TNBC:
http://forum.tnbcfoundation.org/important-info-on-er-expression-in-tnbc_topic9783.html       
       

You may or may not find some helpful information on the following threads:
http://forum.tnbcfoundation.org/choosing-your-treatment-team-questions-to-ask_topic8937.html
and
http://forum.tnbcfoundation.org/tnbc-info-on-this-website_topic10166.html
and
It is very important to know that there are many TNBC survivors/thrivers.
In fact, there are a few forum topics about survivors. One is:
   http://forum.tnbcfoundation.org/survivors-needed_topic8221.html


You will have many questions on your list to ask your physician.
Be sure to consider including the following with your questions: ***
      - What are the pros and cons of each chemo option?
      - Request a referral to a Certified Genetics Counselor for a BRCA* test consult.
                      (If a BRCA test has not already been done.)
      - Confirm that a Vit D ** test has been done.
      - How do I contact you for any questions after my appointments?
      - How much time do I have to make my decision?
      - Confirm that your oncologist is knowledgeable on TNBC and treats about how many cases
                   per year.
      - Seek a 2nd TNBC Expert Opinion if there are any questions on TNBC provider expertise   
                   /TNBC treament plan.
      - Am I eligible for any clinical trials?   Pros and cons.
*BRCA TESTING:
   http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458_page1.html?KW=BRCA
**VITAMIN D3:     See especially page 26
   http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page26.html

Please post if you have any questions on the above.


With caring and positive thoughts,
Grateful for today............Judy


*** Addendum:
For new members who have not have surgery yet.
        Consider including to above questions and your own question list the following:
          - What are the pros and cons of chemo first?
          - What are the pros and cons of surgery first?
          - What are the pros and cons of each surgery option?

Edited by Grateful for today - Aug 18 2013 at 3:10pm

Colleen Mary,

Just to be sure..........Vitamin D should be Vitamin D3   (Not Vitamin D2).
In the past, some members were given prescriptions for Vitamin D2.
It is the Vitamin D3 that is over the counter that is best to raise Vitamin D3 levels.
http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page26.html

You may have already seen these other 2 suggestions on the forums:
1. Consider brining some one with you to take notes during the physician's visit.....
        and/or ask the physician if you can tape the visit (if this feels OK with you)
2. Start your own home personal medical record.
        http://forum.tnbcfoundation.org/medical-binder-the-organized-patient_topic10842.html


With caring and positive thoughts,
Grateful for today..........Judy

Edited by Grateful for today - Aug 18 2013 at 12:48pm

Hi Colleen Mary,

Situations similar to yours have come up from time to time on this forum.  I am one of those in the grey area as well (core biopsy ER, PR 2-3%).  I'll elaborate on what I know.

In the past, TN is defined as ER, PR <10%, Her2-.  Nowadays, the trend is to be more restrictive with respect to ER, PR expression and limit TN to those cases where ER, PR expression is < 1%.  The reason for this is that TNBC is quite heterogenous and by using the new definition, it is hoped that the heterogeneity could be minimized.  An abstract presented at ASCO 2012 (http://meetinglibrary.asco.org/content/100716-114) showed that for tumors with ER, PR 0%, 73% turns out to be of the basal subtype, whereas for tumors with ER, PR 1-10%, there is a distribution of subtypes (only 17% is basal).

Why is this important? A recent article from Charles Perou's group (http://theoncologist.alphamedpress.org/content/18/2/123.long) argued that the major distinction for TN should be made on the basis of whether the tumor is basal-like or non-basal.  The argument is that basal vs. non-basal tumors respond to different treatment. This distinction is not currently part of the "standard of care" management strategies.

Irrespective of subtype, the current recommendation is to offer anti-estrogen therapy to anyone with ER>=1%, although the probability of having a significant response increases with the level of expression.  I guess the rationale is that women should not be denied potential benefit from anti-estrogen treatment, even if the probability is low.

In my case, my pre-treatment core biopsy showed a little bit of ER, PR expression.  I had neoadjuvant chemotherapy and the residual cancer after chemo was true TN. Presumably any recurrence would come from this residual so the decision was not to treat me with anti-estrogens. Instead, I enrolled in a trial that treated women with residual cancer with a platinum based regimen.

The recommendation of a second opinion for you is a good one (I had second opinions from two medical oncologists and also had my path reviewed at two other institutions). I would try a NCCN cancer center (http://www.nccn.org/members/network.asp).

Lots of good points have already been shared.  The only thing I would add is anyone can look up the NCCN guidelines online.  You may have to register an account, but it is free.  The NCCN guidelines are pretty much the standard, especially in community based (non-academic) centers.  It can be a little confusing to understand, but it's designed as a decision tree.  So you can look up what is recommended for your tumor size, post conservation surgery / radiation  - whether hormone positive or not.  It was reassuring to me to see my treatment plan clearly stated in black and white as a valid option for TNBC. 

Colleenmary,

Colleen Mary.

Sending caring and good thoughts your way.

Sometimes when I re-read a post, a thought or two cames to mind.
I share thoughts.........try never to give advice.
Thought.............would your oncologist who "considers" you to be TNBC consider doing an insurance
appeal on your "insurance dened" BRCA test?       Thinking that per national guidelines that many
insurances are now covrering the BRCA testing for TNBC for women under 60 years.
Sometimes, one needs to "appeal" a decision to get "an individual consideration review of a policy or
coverage"?        Sometimes, if an an insurance coverage appeal is denied, the insurance policy holder
still has an option for something called like "an outside insurance review" (info submitted by the
insurance to a designated outside independent group outside the insurance company)

There is a Cancer Legal Resource Center connected with Loyola Law School in Los Angeles
that has been menioned on several threads. Right now I can not seem to find it the prior threads.
BUT.......here's a link to the Center itself.     
http://www.disabilityrightslegalcenter.org/cancer-legal-resource-center
Maybe read about the Center......maybe give them a call for some ideas or recommendations
if you would consider asking your onc to help with an appeal.    You know your situation best
......whatever you think.


Grateful for today................Judy

Edited by Grateful for today - Oct 04 2013 at 8:56am

Hi, Colleen Mary,

Hiya,
Also IDC here, stage 1, grade 3
My Oest was 3/8, Prog was 0/8 & HER2 was neg, so not as grey an area as you, but they generally prefer to err on the side of caution it seems.
I'm due for 3 x FEC & 3 x Taxotere, at 3 weekly intervals, starting on Tue - had PICC line put in on Fri.
Get that 2nd opinion, they double tested me 'cos of the 3/8 oestrogen reaction, but felt it too weak to use.
Also going to be sent for gene testing, which will mean double mastectomy if positive & then no radiotherapy needed, if I understand it correctly.
Take care & God bless
x