Recently diagnosed/Need help with radiation decisi

I was diagnosed with TNBC after left mastectomy in October 2011 following abnormal screening mammogram in August. First primary tumor Stg 1 N0 found on additional views September with biopsy 9/21, second tumor found on MRI prior to scheduled lumpectomy (not visible on initial mammogram 8/11) with 2nd biopsy 9/29/11 revealing ER/PR negative which turned out to be the TNBC (biopsy inadequate to do HER2 testing initially). In 1 week I went from "you have the lowest risk BC" to 2 primary tumors in same breast with 2nd being "poorly differentiated" and from lumpectomy to mastectomy with chemo . Got a second surgical opinion at another out-of-state academic medical center with breast care center. She concurred with first surgeon. Since there was no sign of lymph nodes on exam, ultrasound or MRI; I delayed surgery 2 weeks to have the chance for immediate reconstruction but decided based on my own research (I am a pediatric nurse practitioner with experience in pediatric oncology) to tell both surgeons that if there were positive LN on SN biopsy to delay reconstruction and instead insert expander. Turned out that TNBC tumor was Stg 2B N1 (1 of 9 positive nodes) but also with extranodal extension and lymphovascular invasion in area of that tumor (additional micromet in 2nd SN).

I posted elsewhere on the forum links to articles examining the role of RT in TNBC; Judy may remember where, I am off to the airport now so am unable to do so.   Bottom line, for TNBC, there may be a role for RT -- although the studies are retrospective in nature.

DJW,

Lots of positive and caring thoughts to you as you research and decide on the treatment plan
best for you.
It sounds like you already know a lot.   Just disregard anything that is a repeat below.

Realize this is too much info for one reading......thought it better to have the info in one post
and you could came back to it.

When reading about TNBC, try to remember what many articles leave out.........which is hard
to do when one sees words like aggressive so often.   From reading, what I understand is that
WHEN TNBC relapse occurs it tends to occur earlier especially years 1-3 years (compared
to ER + breast cancer). Once a patient with a history of TNBC reaches 5 years (some say 5-7-8 years)
the risk of recurrence is actually LESS for TNBC then for ER+Breast Cancer. The majority of TNBC
patients survive.
When reading articles, remember many articles do not separate the information for TNBC versus
ER + breast cancer.   Many articles are based on PRIOR chemo/treatment plans. Note that
some articles/studies are based on very small samples. Fortunately, there is much research on
TNBC being done now (for information that was needed yesterday.)

Realize that many newly diagnosed TNBC use the TNBC forums.   Many TNBC who have
recurrence use the forums. There are many, many survivors out there who have passed the
3 and 5 year mark and are too busy to post!
There are a few survivors forum links:      
   
http://forum.tnbcfoundation.org/any-10-year-survivors-out-there_topic9398_post94574.html?KW=survivors#94574">http://forum.tnbcfoundation.org/survivors-needed_topic8221.html(/URL">

http://forum.tnbcfoundation.org/any-10-year-survivors-out-there_topic9398_post94574.html?KW=survivors#94574              (and there may be others)



Donna's reference above is important:
http://forum.tnbcfoundation.org/radiation-rni_topic8602.html?KW=Radiation MA.20 study.
Breast Cancer: RNI Prolongs Disease-free Survival for Women with One to Three Involved Nodes
Be sure to notice the last sentences:
"Dr. Buchholz (MD Anderson) acknowledged the value of RNI, but deemed that the population of “all women with one to three positive nodes” is a HETEROGENEOUS group with different risks for relapse, so accrual of additional data to facilitate subanalyses, especially of the group of patients who have low risk for residual regional disease, is necessary before RNI should be made a general recommendation."

Another reference to the same MA.20 Study:
http://www.oncolink.org/conferences/article.cfm?id=2148
****note the following from this reference:
There are several interesting questions that this trial does not completely answer:
Is it necessary to radiate the IMNs? In this trial, all patients received radiation to the IMNs, so it is reasonable to assert that this is the new standard of care. Nevertheless, only 1 patient treated with WBI alone relapsed in the IMNs, a finding consistent with recurrence patterns found in other studies conducted in the modern era. IMN treatment may be associated with increased radiation dose to heart and lung, which may be clinically significant as documented in this study by increased pneumonitis risk. The question of IMN radiotherapy remains unanswered at this point, and is an issue that requires further directed study.
Patients with 1-3 + nodes represent a heterogeneous group, with some patients having only microscopic disease in one node – should all of these women receive RNI? Recent data from the Z11 trial, in which patients did not receive RNI or completion axillary dissection after detection of 1-2 positive sentinel lymph nodes, suggests that in patients with low volume axillary disease, WBI alone may suffice. Further study is necessary to determine whether low risk 1-3 + node women will benefit from RNI.

You will want to find some articles on the different types of radiation like IMRT.
From the Fox Chase Cancer Center:
http://www.fccc.edu/cancer/types/breast/treatment/radiation/index.html

*******From above articles, it is clear one needs expert radiation oncology consult(s) re:
                  pros and cons of radiation.
                  Types of radiation therapy.
                  For left sided breast cancer: best protocol. best machine.
                                                                      best heart/lung protection AND best breast cancer
                                                                                  treatment result   
                                                                      get opinions on how best to protect the heart *****

Lee mentioned that she had posted articles on radiation therapy:
See about 10th post on page 1 of forum:
     http://forum.tnbcfoundation.org/people-who-did-not-respond-to-act_topic8990.html

It is recognized and acknowledged that each individual situation needs an individual plan of care
by one's treatment MD's. This was my situation and my plan since you asked:
Neoadjuvant dose dense AC q 2 weeks x4 and Taxol q 2 weeks x4. (complete clinical response)
Unilateral right mastectomy with ALND (axillary lymph node dissection)
Path: ypT1cN1a
Radiation x 29 treatment days.
    Right chest wall. Scar bolus every other treatment day.
        Adjacent lymph nodes/high tangential field.      (not full axillary field due to ALND)
        (Internal mammary nodes field not included)
   Right supraclavicular lymph nodes area.
(My radiation treatment plan was done/given at a comprehensive cancer center)

If you have any questions on the above, please post them and I will try to answer.........
      or other members may be able to answer.
If any one finds any thing in above that is not correct, please post.

With caring and positive thoughts,

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

-------------------------------

DJW,

Again, you may already know. Would rather repeat then assume.
BRCA testing and VItamin D information is important for TNBC.

Consider seeing a certified genetics counselor re: BRCA testing.
See forum: http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458.html?KW=BRCA

If you already know you have a good Vitamin D3 level, great.
If you do not have a current/recent Vitamin D3 level, you may want to discuss having the
    level checked with your MD.
If you Vitamin D3 level turns out to be low, discuss plan with MD to bring level up.
See forum:   http://forum.tnbcfoundation.org/vitamin-d3_topic5338.html

Lee posted some great TNBC/breast cancer related articles on forum:
     http://forum.tnbcfoundation.org/open-access-articles-on-tnbc_topic9440.html

From TNBC website-> resources > download>
    New Guide on TNBC
             http://www.tnbcfoundation.org/tnbcguide.htm
    State of the Art Treatment
             http://www.tnbcfoundation.org/State-of-the-Art%20Treatment%20for%20TNBC.pdf

Judy



Edited by Grateful for today - Jan 11 2012 at 4:09am

Regarding radiation therapy and especially radiation on the left side, you might want to investigate Tomotherapy Computer Guided IMRT (Intensity Modulated Radiation Therapy).

RNI = Regional Node Irradiation.< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0">