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Lee21 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Topic: newly diagnosed
    Posted: Dec 22 2011 at 11:37am
I am posting this again because I initially posted as a reply, sorry for the confusion......
------------------------------------------------------------------------------------------------------------------


I've been looking at this site for a few days since my new diagnosis 2 weeks ago to the day but I just registered so I can get connected.

I always thought I was low risk for BC and not as vigilant as I should have been with annual mammography (where have I heard that one before!). I had one 2 years ago and the report said I have very dense breasts making it difficult to be certain but otherwise normal.  Given that dense breasts is a risk factor (which I didn't know then) I wished that there was a note in the radiology report to that effect which would have motivated me to get a mammogram last year instead of being forced to this month because of symptoms. Probably would have made significant changes to my diet as well.   Hind sight is a wonderful thing.

In any event, I had a diagnostic mammogram with an ultrasound guided core biopsy which came back with a diagnosis of IDC, grade 3.  As soon as I saw it was grade 3 I knew I would be in the poorer prognosis category. The receptor status confirmed low ER, PR expression (4%, 3% respectively) and HER2 1+.  By ultrasound the mass is about 1.7 cm so I am hoping that it will stay < 2 cm with the actual sample.

I met with the breast care team at the comprehensive cancer care center close to where I live and was recommended to have a central lumpectomy with removal of the nipple-areola complex because I had discharge.  I haven't had staging yet -- the sentinel node bx will be done at the time of surgery. I am probably going to get the chemo followed by RT, all very familiar sounding to all of you.

I am looking into getting a second opinion at another cancer center out of state but am concerned that any delay would affect my survival chances.  Any thoughts on that anyone?

It is comforting to see the resources that are available on this website (chemo tips, radiation tips, etc.) and that there will be people to connect with in the days to come.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2011 at 12:27pm
Hi Lee,

Welcome to the site.
Will post again but just had to post now about "grade 3".
There is a difference between grade and stage.
The stage is not known until the node status is known.
So, one could be a Stage 1 even with a grade 3 tumor.
So, put a hold on the poorer prognosis category
......you do not have all the info yet to know prognosis.


From NCI:

What is tumor grade?
Tumor grade is a system used to classify cancer cells in terms of how abnormal they look under a microscope and how quickly the tumor is likely to grow and spread. Many factors are considered when determining tumor grade, including the structure and growth pattern of the cells. The specific factors used to determine tumor grade vary with each type of cancer.

What is staging?
Staging describes the severity of a person’s cancer based on the extent of the original (primary) tumor and whether or not cancer has spread in the body.
Common elements considered in most staging systems are as follows:
Site of the primary tumor.
Tumor size and number of tumors.
Lymph node involvement (spread of cancer into lymph nodes).
Cell type and tumor grade* (how closely the cancer cells resemble normal tissue cells).
The presence or absence of metastasis.


It is very important to know that there are many survivors of triple negative breast cancer.
It is important to know that many newly diagnosed and those with recurrences
post on this site. But there are many survivors who do not post.....they are so
busy living their lives. In fact, there are a few forum topics about survivors:
http://forum.tnbcfoundation.org/survivors-needed_topic8221.html
http://forum.tnbcfoundation.org/any-long-term-survivors-out-there_topic9365.html

With caring and positive thoughts,

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




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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2011 at 5:47pm
Judy
Thank you for the information.  I do know the difference between grade and stage but I am glad you made the point for this forum. But you are right to be hopeful -- TNBC is a heterogeneous disease that scientists are beginning to understand.  The complete genome sequence information was obtained for several TNBCs and they are finding activation of intracellular pathways not seen in the other BCs.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2011 at 6:31pm
Lee,
Try not to beat yourself up too much about the delay in your mammogram. It was a clean mammogram that kept me from going to the dr when I noticed a quarter-sized indentation in my breast. That happened weeks after the mammogram. I put off going to the dr until I felt a lump, which turned bout to be quite large. In my case the yearly mammogram convinced me I was fine. I know better now. Besides TNBC grows pretty fast so it's difficult to know if it would have been seen a year ago.  Good  luck to you. Waiting is the most diffcult  Once you have a plan, you will feel more in control.
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2011 at 11:56pm
Lee,
 
I'll echo overwhelmed about the delay. It had only been 18 months since my last mammo when I was dx with a 2 cm tumor. For my age at the time, recommendation was every 1-2 years. You'll read many times of women discovering tumors right after having had mammo's that hadn't been detected by the mammo.
 
As far as timing on getting a second opinion, you need to do what you will be most comfortable with. We all have a different fear level. Mostly we don't want to live with regrets of what we shoulda, coulda, woulda .
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Dec 23 2011 at 1:23am
Hi Lee,

It sounds like you are very educated already about breast cancer and TNBC
in particular.
Will post some info which you may already know.
If this is too much info all at once, apologize. Read in parts or come back when you
are ready for more info. Wanted to put all this info in one place for you.
Again, you probably know most of it. Feel better to post than assume.

In regards to your question regarding delay or time until start of treatment:
The best answer on how much reasonable time you have to make a decision
on your treatment plan would be to ask the oncology MD at the comprehensive
cancer center where you were already seen. That MD knows your case best and
could give you the best answer.
Not sure there is a black and white answer.
Maybe someone will post who has more definitive info.
Those with TNBC will take into consideration that TNBC can be fast growing and
it is not clear if there is current info specifically re: time until treatment start and
TNBC. So, it seems info available is for all breast cancers.
That being said, this is what I found on the web (in regards to all breast cancers):
(Again what your MD says about time is best. Web references given to give a
feel for what the literature says about this matter).


http://www.melbournebreastcancersurgery.com.au/delay-between-diagnosis-surgery.html
Article by breast surgeon in Australia re: delay between diagnosis and surgery.
If I am reading the article correctly, article says 40-60 days delay does not effect
oncologic outcome.   (60 days seems long to me but that is what the article states)
? date of article. article does have a 2010 reference.

http://www.ncbi.nlm.nih.gov/pubmed/21494124?dopt=Citation
from MD Anderson in Texas. only node negative in study.   delay: 1-132 days.
Conclusion: Modest time intervals from imaging to surgery are not significantly associated with change in tumor size; thus, patients may undergo preoperative work-up without experiencing significant disease progression.

http://www.ncbi.nlm.nih.gov/pubmed/20853049
from MD Anderson in Texas.
Conclusion: Interval from diagnosis to treatment of breast cancer within the same cancer center was longer at the CH (community hospital) than the UH (university hospital). There was, however, no effect on overall survival. Time to treatment may not be a meaningful indicator of cancer care quality.
(A total of 1337 patients were included; 634 patients were treated in the CH and 703 in the UH. Interval to treatment was longer in the CH compared with the UH (53.4 ± 2.0 vs 33.2 ± 1.2 days; mean ± standard error of the mean [SEM], P < .0001))

For me, I started chemo about one month after core biopsy and FNA (fine needle aspirate
of one lymph node). Month to get initial appts and second opinion. MD was comfortable
with the month.

Mentioning chemo and surgery.
Have the pros and cons of which to do first (chemo vs surgery) been explained by the first cancer center?
As you mentioned, there are at least 6 sub-types of TNBC.
http://www.jci.org/articles/view/45014/files/pdf
Thus, TNBC need to consider knowing if their tumor is responsive to chemo for the opportunity
to switch to a different chemo if needed versus removing the tumor first.

You either have already seen or will soon seen the discussion re: chemo and the order of
chemo meds if your chemo plan will include: ACT   (adriamycin, cytoxan, taxol) or T-FEC
(taxol, 5-fluorouracil, epirubicin, and cyclophosphamide{cytoxan) )
see: forum topic: http://forum.tnbcfoundation.org/attention-newbies-important-new-chemo-study_topic7771.html
This was a retrospective study. Some oncologists prefer prospective studies.
So, not a black and white situation.
Believe some comprehensive cancer centers due the taxol first and others do the taxol last.

2 important matters for newly diagnosed: Vitamin D and BRCA testing.
Vitamin D:   Many TNBC newly diagnosed have low Vitamin D levels.
                      If you do not know your level, you may wish to discuss with your MD (so if it is low
                           a plan can be made)
                     see: forum topic: http://forum.tnbcfoundation.org/vitamin-d3_topic5338.html
BRCA testing: Now recommended for TNBC under 60 yrs to see a certified genetics counselor about
                                evaluation/consideration for BRCA testing.

And finally:
Will repeat many TNBC tumors are found between mammograms.
So even if you had a mammogram a year ago, there is no guarantee, the tumor would have shown.
Most realize a healthy diet is important. However, I remember what the oncology nutritionist told me:
    even vegetarian marathon runners get breast cancer!
And for hope: love the folowing quote:
Found this statement by Jerome Groopman, MD in his book: "Anatomy of Hope" helpful.......usually
have to read it twice to understand it.
" Each disease is uncertain in its outcome and within that uncertainly we find real hope, because a
tumor has not always read the textbook, and a treatment can have an unexpectedly dramatic
impact. This is the great paradox of true hope. Because nothing is absolutely determined, there
is not only reason to fear but also reason to hope."
He also says: "Hope is a belief and expectation."

With caring, positive and hopeful thoughts,

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




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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Dec 23 2011 at 1:27am

Addendum: There is a post by Steve on "Newly diagnosed" for you.   (Welcome new members forum)
                      Again, you have probably already seen it.....but just in case.      Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 23 2011 at 4:00pm
Judy,
That was a lot of very useful information.  I am very impressed with how knowledgeable people using this forum are.  I guess we all become experts when our lives are at stake.
Although the breast care clinic here uses a team approach, I got to speak with only the surgeon.  Even though they said chemo and RT are down the road, I didn't meet with any of them.  Disappointed.
I asked about neoadjuvant -- the surgeon hesitated and I filled in for her (said too small) -- I should not have finished her sentence for her.
My vit D level was borderline 2 years ago (32ng/mL) despite being on 1000 IU per day so I upped the dose to 3000 IU (hopefully no toxicity) but we don't get sun in Michigan for half of the year.
My second opinion team wanted an MRI evaluation before I go out there -- it wasn't something that was mentioned by the local team.  Given the dense breasts and the fact that US was done only on one breast, it would seem to make a lot of medical sense to have the MRI and make sure the lumpectomy will get everything.  It will shake my confidence in the locals if the MRI showed something more extensive.
I asked about BRCA testing but they said only for women less than 50 years old.
I finally got my surgery date scheduled -- a full 41 days after Dx.
It's been hard to get information on how fast BCs grow in humans; I found 2 studies,
(1) http://www.ncbi.nlm.nih.gov/pubmed/18466608
Tumor growth varied considerably between subjects, with 5% of tumors taking less than 1.2 months to grow from 10 mm to 20 mm in diameter, and another 5% taking more than 6.3 years. The mean time a tumor needed to grow from 10 mm to 20 mm in diameter was estimated as 1.7 years, increasing with age. The screen test sensitivity was estimated to increase sharply with tumor size, rising from 26% at 5 mm to 91% at 10 mm. Compared with previously used Markov models for tumor progression, the applied model gave considerably higher model fit (85% increased predictive power) and provided estimates directly linked to tumor size.
(2) a Russian study (not sure about the technical quality) claiming it could be as short as 21 days for doubling time of a tumor mass.
Neither study stratified the BCs by subtype.

Hopefully my tumor isn't growing at the clipper rate.


12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 23 2011 at 4:06pm
Judy
Where is the link to the guideline for BRCA testing (under 60)? Thanks.
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 23 2011 at 4:24pm
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 23 2011 at 5:23pm
Dear Lee,

BRCA testing only for women under 50 is poor advice..The new guidelines say <60.

Have you see Dr. Lisa Newman?


good luck to you,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ds21 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 23 2011 at 5:27pm
Interesting because the Cancer.gov site is still listing a guideline of BRCA1/2 screening for age <50

http://www.cancer.gov/cancertopics/pdq/genetics/breast-and-ovarian/HealthProfessional/page2

DS21


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Post Options Post Options   Thanks (0) Thanks(0)   Quote lisadi1963 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 26 2011 at 8:26pm
I am a newbie to this as well.  I was just diagnoised with IDC 12/13/11. I am triple negative and have had the BRCA test.  I should get the results of that in a few days.  I am trying to read all the information that I can get.  It's a little overwhelming to say the least.  I have read that a lot of triple negative cancers will come back with a positive BRCA test.  Is that true? 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 26 2011 at 9:11pm
Dear Lisa,

Welcome to our family and sorry you have reason to be here..

The short answer to your question is no...most TNBC is not BRCA+...

BUT if you are BRCA1+ most likely you will have TNBC if you have breast cancer but the converse is not true..

good luck with your BRCA test...I will be rooting for a negative test result for you..please let us know what the result is if you are comfortable doing so.

all the best,

Steve


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2011 at 2:08am

Donna:   Thank you for posting the link to info on BRCA testing.


lisadi,
    Lots of caring and positive thoughts to you as you and your treatment team develop your
    treatment plan.   Many of us found that initial time difficult, stressful and anxiety provoking.
    Do know that once one has a treatment plan....and then actually start treatment, one does
    feel better. And yes, all the information is definitely overwhelming.
             With positive thoughts,               Judy


Lee,
   Will post knowing that you may already be aware of info. As previously said, would rather
       post then assume.
   Vitamin D:
       Vitamin D importance and forum topic noted above. Link now repeated:
       http://forum.tnbcfoundation.org/vitamin-d3_topic5338.html
       Since there are 27 pages on this forum, wanted to point out:
        on page 26: Why should you keep your vitamin D level around 50 ng/ml?
                                September 19, 2011 -- Dr John Cannell
                                (note: You may want to discuss with your MD as beleive there is
                                  ....you guessed it....a difference of opinion on optimal level and
                                 optimal range for D3.)
        also on page 26: Latest case-studies on vitamin D toxicity
   Pre-surgery MRI:
        Last year, in my experience, there was a difference of opinion by the surgeons
           at 2 major facilities connected with a comprehensive cancer center on routine
           pre-surgery MRI.
        There could be more definitive info this year re: routine pre-surgery MRI (after mammogram).
        Mentioning this as you said you experienced one center not asking for a MRI and other
            other center requesting the MRI before consult.
   Metformin:
        There are some clinical trials with metformin which you may want to ask your MD about
                 if you are interested. Your MD will know if any metformin trials are ones appropriate
                 for you to consider and will know all the trials not just the ones listed below.
        There are some where you take metformin prior to surgery.
                 ClinicalTrials.gov Identifier:     NCT00984490
                 ClinicalTrials.gov Identifier:     NCT00930579
        There is another trial which is metformin vs placebo after treatment completed.
               ClinicalTrials.gov Identifier:      NCT01101438
        There was an animal research article.....regarding metformin when used at same time as
               adriamycin.   Your MD might have more info what the opinion of clinical providers
               is regarding that article.
               http://cancerres.aacrjournals.org/content/69/19/7507.full
        There are at least 3 topic forums re: metformin on TNBC Talk:
               http://forum.tnbcfoundation.org/using-metformin_topic7990.html
               http://forum.tnbcfoundation.org/metformin-trials_topic8690.html
               http://forum.tnbcfoundation.org/asking-questions-on-metformin-trial_topic9079.html

   With caring and positive thoughts.................Judy                    
   
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2011 at 2:47am
Lee and all,

CLARIFICATION of my post on 12/23/11.

#1
In regards to your question regarding delay or time until start of treatment:
***on re-reading my post, the following may have not stood out enough***
The BEST answer on how much reasonable time you have to make a decision
on your treatment plan would be to ask the oncology MD at the COMPREHENSIVE
cancer center where you were already seen. That MD knows your case best and
could give you the best answer.    (or the consult COMPREHENSIVE center MD)

#2
That being said, this is what I found on the web (in regards to all breast cancers):
(Again what your MD says about time is best. Web references given to give a
feel for what the literature says about this matter).
*** On re-reading the above line, instead of saying to give a feel for what the
      literature says about this matter......I might have expressed my thought better
      by saying.......here's what some articles (2 from NCBI-NIH) are saying
      BUT remember one article was based on info from 2003-2006 and another
      from 2005-2008 information
     ....... or maybe have just left it at "ask your MD" after now re-looking at the
     dates the information was from.

Hope I did not confuse anyone. Simply, ask your MD about the time you have to make
       your treatment decisions.

With caring, positive and hopefully clarifying thoughts to all,

Grateful for today..............Judy
       
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2011 at 8:18am
Judy
Thank you for the clarification (BTW, I started posting this reply, then hit the back arrow on my browser to read the message, and when I hit the forward arrow, what I had written has disappeared; is it floating somewhere in space?).

I have only seen the surgical oncologist so far although my case was reviewed by the center's tumor board.  I have not seen the medical oncologist or anyone else. The surgeon says it's fine to wait a few weeks but it is not clear how much experience they have with TNBCs.  I am concerned because TNBC has a reputation of being an interval cancer and behaves aggressively.

The role of MRI is controversial.  Someone from the center that I am going to (U of M) has written a position paper and said that MRIs can lead to false positives, delays and unnecessary surgeries and not warranted as routine for pre-op. 

Lee
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ds21 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2011 at 9:38am
One highly cited study on the use of MRI in preoperative evaluation is a review by Dan Hayes from Michigan

http://www.ncbi.nlm.nih.gov/pubmed/19679690

A couple of interesting findings.  In 11-24% of cases the MRI finds an additional foci of cancer in the ipsi-lateral breast.  This is consistent with older pathology results examining tissue removed at mastectomy.   The authors argue that post-lumpectomy radiation therapy will take care of these foci, but by that logic, why do a lumpectomy at all?

In 6-15% of cases MRI finds a lesion in the contra-lateral breast, but only about half of these turn out to be cancers.  The authors argue that the false positive rate is as high as the true positive rate leading to a lot of unnecessary work ups and confusion.

Note - in neither case is TNBC split out as a subgroup.

Finding multiple primaries, either ipsi- or contra-lateral, would raise concern about a BRCA mutation, and genetic testing could be useful particularly in TNBC.  Multiple primaries, with or without a documented BRCA mutation, would also raise prophylactic mastectomy as an option.  Finally, depending on where the primary is, an MRI might be useful in surgical planning, for example assessing the need to include the nipple in a lumpectomy or assessing chest wall spread in a deep lesion.   On the other hand, going to through multiple imaging studies and biopsies, especially if it ends up being a false positive, could confuse, dishearten and delay treatment of the primary tumor.  Up to you and your physician, but something to discuss.  Bottom line, there have not been any randomized controlled trial to assess the impact of having a preoperative MRI on long term survival so we really do not know.

David
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2011 at 10:18am
Dear David,

thank you very much for your informative, thoughtful, post.

I carry the BRCA1 mutation and passed it on to my daughter...

Regarding BRCA testing...under NCCN guidelines (I think first published March of this year) ANY woman with TNBC under the age of 60 should be tested for the BRCA mutation, even absent family history...and since the guidelines came out it has been my experience that most major insurance companies will pay for the testing for women in our community <60.

Regarding MRIs....from my experience they remain the diagnostic tool most favored by major cancer centers for women at high risk and especially for younger women with dense breasts. There was a recent paper of the subject that showed MRIs being more efficient than mammograms and yes there are still too many false positives and that is a problem and also mammograms seem to be able to more easily detect certain breast cancers so many high-risk clinics do an alternating surveillance program of MRs and mammograms.

all the best,

Steve

Coverage Policy

CIGNA covers BRCA1 and BRCA2 genetic testing for susceptibility to breast or ovarian cancer in adults as medically necessary for ANY of the following:

biologically-related individual from a family with a known BRCA1 or BRCA2 mutation personal history of breast cancer and ANY of the following:

diagnosed at age 45 or younger diagnosed at age 50 or younger with EITHER of the following:

o at least one close blood relative* with breast cancer at age 50 or younger o at least one close blood relative* with epithelial ovarian, fallopian tube, or primary

peritoneal cancer diagnosed with two breast primaries (includes bilateral disease or cases where there are two or

more clearly separate ipsilateral primary tumors) when the first breast cancer diagnosis occurred

prior to age 50 diagnosed at age 60 or younger with a triple negative breast cancer (my emphasis)




Edited by steve - Dec 27 2011 at 10:19am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ds21 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2011 at 11:18am
Steve,

A couple of questions about BRCA testing.  My understanding is that Myriad Genetics is the only lab doing the test, and that their screen is a process involving multiple technologies rather than a single test, but they have not moved to complete genomic sequencing.  BRCA1 and BRCA2 are large genes and there are many variants in both, some benign naturally occurring SNPs and some pathological.  At this point, the costs of Myriad's analysis is comparable to complete genome sequencing.  Is anyone using complete genome sequencing to evaluate the BRCA1 and BRCA2 genes?  If complete genomic sequencing was done, are there ways to work with Myriad and their extensive database to evaluate the risk?

Genes can be silenced epigenetically as well as through primary mutations.  Does Myriad's testing evaluate expression and function or just genomic sequence?

BRCA1 and BRCA2 are involved in DNA repair pathways. In other genes, e.g. P53, the pathway may be functionally inactivated by mutations in upstream and downstream genes even when P53 itself is intact.  Is the same true for BRCA1 and 2?  Do any of the tests look at function of the whole DNA repair pathway function, or just the structure of the BRCA 1 and 2 genes?

David

Co-survivor
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