Newly Diagnosed Support

Hello Tiger,

Tiger lily, I hang around here just to let people know its not all doom and gloom. I was dx 12 years ago next month.....but who's counting! The tx I had was protocol for the day but was much less than is given now. Look in the archives of this site and you'll find quite a few " long term survivor" threads. Also in resources are many tips to help you thru such as lists of questions to ask your dr, what to expect, etc. 

Jean,

That is a good thing...under 2 is stage 1...but no matter...fight it aggresively...take the chemo and radiation. Just my opinion.

Informational.
Stages of Breast Cancer http://www.cancer.gov/cancertopics/pdq/treatment/breast/Patient/page2
Above NCI reference includes:
     Stage IA   2 cm or smaller with no spread outside the breast
     Stage IIA 2 cm or smaller involving 1 to 3 axillary lymph nodes
                                                                    (or in the lymph nodes near the breastbone
                                                                    (found during a sentinel lymph node biopsy)

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Jean (tigerlilly),

You WiILL get thru this.
Many feel the initial time.....hearing the diagnosis and making a plan.....is the hardest and the most
stressful and anxious time.   Once one has a plan, in one respect (which is hard to explain until you
experience it), things do get "better".

Now, stop, let your tongue go limp to the bottom of your mouth, let your jaw go drop down..........
now let your shoulders go down and go limp........
take a few deep breaths in and out.
Maybe try this a few times a day.   Sometimes, it helps....at least a little.
Also, try to remember what has relaxed you in past stressful times........a certain CD, a warm shower,
a walk outside, a warm cup of tea or cocoa etc.......try what worked for you in the past........and try
any thing new that feels to you it might help.
Recently, some one told me rocking in a rocking chair can stimulate the parasympathetic nervous
system (relaxation system).....worth a try.
Some members have used prescription Ativan or other meds for the anxiety when needed. Discuss
with your physician if you feel this would help
The experienced oncology social workers at the TNBC Hotline are awesome. Every time I have called
have been glad I did. (Sometimes there is a little wait.....but I found the wait was worth it.)
           Monday through Thursday 9am to 7pm EST and Friday 9am to 5pm EST.
           Phone:        877-880-TNBC (8622)

When chemotherapy is part of the treatment plan, a Ki-67 of 70-80% is actually good. The chemo
works on rapidly dividing cells.

Do mention you are claustrophobic for the MRI.   Ask what the MRI protocol is for those with
claustrophobia.   Some places have open MRIs.

TNBC survivors. When you have the time, look at the thread on survivors:
   http://forum.tnbcfoundation.org/survivors-needed_topic8221.html

Am not clear if you have seen a medical oncologist......or maybe you will be seeing both the
surgeon and medical oncologist.       It is better to see BOTH the surgeon and the medical
oncologist before you make your final treatment plan. (Some places also include the
oncology radiologist in the initial planning consult.)

You probably already have a list of questions for you appointment.
You may like to consider to include some basic questions like:
           1. What are all the chemo treatment options? (including clinical trials)
           2. What are pros and cons of each chemo option?
           3. For your particular case, what are the pros and cons for lumpectomy vs mastectomy?
           4. For your particular case, what are the pros and cons of:
                      Chemo first (neoadjuvant chemo) then surgery
                      (There are several sub-types of TNBC. With chemo first, one can tell if the tumor
                        is responding to the given chemo or not.   Obviously, this can not be done if
                        surgery is done first. There are several threads on this chemo vs surgery first.
                        One is:
                        http://forum.tnbcfoundation.org/newly-diagnosed_topic9432.html
                     
                                                              versus

                      Surgery the chemo (adjuvnat chemo)


           5.   Ask about a Vitamin D3 level and BRCA tests being included in your base line tests.
                  If already done, great.    If not, ask for them
                  Some with TNBC have had a low vitamin D3 at the time of diagnosis. If a low level is
                        found, one can make a plan with physician for increasing one's Vit D3 level.
                        Further info on Vit D is on: http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page26.html                    
                        especially p. 26.
                 One needs to see a certified genetics counselor re: BRCA testing.
                     See:    http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458_page1.html?KW=BRCA   
               Will BRCA test be done ASAP? (if decision made to do after genetics consult)
           6. What is team's opinion regarding the reasonable time you have to make decision?



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

Edited by Grateful for today - Dec 22 2012 at 12:44pm

Hi Everyone,

Carla

Tigerlily (Jean)

 

Overall, there is no difference in survival between neoadjuvant vs adjuvant chemotherapy.  

 

If neoadjuvant chemo results in a pathological complete response (pCR), then prognosis is excellent (3-5 year survival is 90+% vs 60%).  Additionally, if one does not achieve pCR (only about 25-30% TN patients achieve a complete response) there is the option of additional adjuvant chemotherapy (there are trials for this situation).

 

Your breast surgeon is correct in saying that an untreated tumor will provide clearer cut information regarding staging.  However it is not clear that the TNM system applies that well to TNBC.Having stage I TNBC doesn’t necessarily mean that one should be getting less chemo than someone with stage 2 disease, although patients with tiny tumors (T1a/b, less than 10 mm) have excellent prognosis after multimodal therapy.

 

By the way did you get an MRI to assess tumor size? MRI is supposed to be the most accurate.

 

To obtain more information on TNBC, I would recommend going to this thread:

http://forum.tnbcfoundation.org/open-access-links-articles-tnbc_topic9440_page1.html

 

I would certainly go and seek the advice of a medical oncologist with expertise in TNBC before making a decision.  You might also want to ask about participation in clinical trials.  A number of clinical trials incorporate a molecular component (profiling or sequencing to determine the molecular subtype of the tumor).

 

Hope this helps,

Lee

Here are links to explanations of Tumor Markers:

http://www.cancer.gov/cancertopics/factsheet/detection/tumor-markers

http://www.cancer.org/treatment/understandingyourdiagnosis/examsandtestdescriptions/tumormarkers/tumor-markers-what-are-t-m

Good Morning Diane and I am so glad you found us but at the same time we hate that this has happened.