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TNBC info on this website

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    Posted: Aug 04 2012 at 9:12pm


For those new to the TNBC forums, Welcome.
You may still be exploring all the information on the webstie.

There is a lot of information to explore by checking out all the topics on the horizontal bar on
the home page http://www.tnbcfoundation.org/ ("about TNBC" "about us" and so forth)
as well as in the various forums http://forum.tnbcfoundation.org/

TNBC (General Information)
For example, on the horizontal bar, under " about TNBC", you will find: "understanding TNBC" and then
one may download, a copy of :
*****Guide to Understanding TNBC
http://www.tnbcfoundation.org/tnbcguide.htm
also at:   http://www.lbbc.org/Understanding-Breast-Cancer/Guides-to-Understanding-Breast-Cancer/Guide-to-Understanding-Triple-Negative-Breast-Cancer
*****State-of-the-Art Treatment for Triple Negative Breast Cancer: Talking With the Experts
http://www.tnbcfoundation.org/State-of-the-Art%20Treatment%20for%20TNBC.pdf
The brochures are a good place to start. Just remember by the time a brochure or article is
published, there's always the possibility that there may be some new information.

QUESTIONS
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 chemo first?
      - What are the pros and cons of surgery first?
      - What are the pros and cons of each chemo option?
      - What are the pros and cons of each surgery option?
      - Request a referral to a Certified Genetics Counselor for a BRCA* test consult.
      - 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.
      http://forum.tnbcfoundation.org/choosing-your-treatment-team-questions-to-ask_topic8937.html

*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


TNBC NEWS/RESOURCES/TIPS
Another resource is the Forum: TNBC News, Resources and Tips:
http://forum.tnbcfoundation.org/tnbc-news-resources-tips_forum6.html

TNBC/BREAST CANCER ARTICLES
There is a forum topic with lots of TNBC/breast cancer related articles:
http://forum.tnbcfoundation.org/open-access-links-articles-tnbc_topic9440.html

ABBREVIATIONS
There is a thread with some of the abbreviations used on the forums.
   http://forum.tnbcfoundation.org/abbreviations-on-forums_topic9524.html

10/16/12: Meet TNBC Foundation's first (Un)Common Knowledge Webinar Presenter - Patricia Prijatal
Author of " Surviving Triple Negative Breast Cancer"
http://www.tnbcfoundation.org/uncommonknowledge_prijatel.htm
( Click on    [   Link to webinar    ]   on the above link   )
To view this Webcast Adobe Flash Player 10.1 or higher is required.

SURVIVORS
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. One is:
   http://forum.tnbcfoundation.org/survivors-needed_topic8221.html

FORUMS: FAQs on POSTING etc on the FORUMS.
http://forum.tnbcfoundation.org/faq-on-posting-etc-on-the-forums_topic11222.html


MEDICAL BINDER- THE ORGANIZED PATIENT
http://forum.tnbcfoundation.org/medical-binder-the-organized-patient_topic10842.html

SCARFS, HATS
http://forum.tnbcfoundation.org/scarfs-hats-with-hair-attached_topic9503.html

SUPPORT FOR THE NEWLY DIAGNOSED. Sloan Kettering Cancer Center psychiatrist's 4 videos on support.
       http://forum.tnbcfoundation.org/support-for-newly-diagnosedvideos_topic9641.html

SURFING THE WEB FOR CANCER INFORMATION
http://forum.tnbcfoundation.org/surfing-the-web-for-cancer-info_topic9895.html

THE 10 COMMANDMENTS OF BREAST CANCER
http://secondbasedispatch.com/2011/09/21/the-10-commandments-of-breast-cancer/

The following video is on the "about us" section of the forum under tnbc video clips.
It is from the Discovery Channel Patient education: TNBC: Get the Facts.
The Discovery Channel presents an all new patient education program that addresses triple-negative breast cancer, including risk factors, treatment, and promising research being done on targeted therapy for the disease.
http://discoveryhealthcme.discovery.com/tnbc/media/program.html
or directly at http://discoveryhealthcme.discovery.com/tnbc/tnbc.html    and click
   on "Watch the program."


There are many, many other forum topics/threads that are important and informative.

The above are some of the ones when first coming to the forum to consider reading or at least
be aware of them.


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





Edited by Grateful for today - Jun 22 2013 at 12:57am
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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: Nov 04 2012 at 10:22am
Hi,

For those new to the TNBC forums, Welcome.
You are probably still exploring all the areas and information on the website.

There is a lot of information on the website/forums.
The above initial post may help you get started

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


Edited by Grateful for today - Nov 04 2012 at 9:29pm
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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 01 2012 at 12:27am

Bump
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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: Mar 24 2013 at 7:21pm

"Bumping" for new members who have joined since December 1, 2012.

See above posts.


Grateful for today..........Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ddspain Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2013 at 8:17am
Hi  !

Thank you so much for the reply. Frankly I am really shaken up by this news. Before this, I was very confident that my cancer was just a "hangnail" cancer situation. I had not lost any sleep over this yet !
The thought of it killing me was so remote..I barely grazed the idea.

My first oncologist meeting was a divided conversation...He did not have the "onco " test result and was giving me options based on 34%ER +. After talking for 15 minutes a nurse came in and handed him the  onco test result.
 The conversation took a turn thats for sure.
Next week is my appt to discuss the chemo options and get my port.

I had already asked about the BRCA test and was told I didnt fit the profile for needing it. That was before 3xN.  I think they will say yes now. I am 55.  I have two daughters.

I am fascinated by the vitamin D. Last summer I saw  my general DR. because I was just not feeling well
often.  Fatigue and brain fog . I wasnt sleeping well alot .
Blood work came back vitamin D insufficient. I bought a supplement which I took for a while consistently and then inconsistently for awhile....and then I just stopped. oops
She gave me an order for a Mammogram but I did not get one. oops again

I found the lump myself in early February.

The cost is staggering..do you have any tips for handling the expense ? It looks like it will be 10,000. out of pocket with my insurance. Maybe not that much to some people........

Do you recommend seeking a specialist for 3+N ? 

You are very kind to take your time to help others. Your thoughts have been very comforting.
Delayne

right mastectomy 3-20-13.
1.5 cm
grade 3 tumor
nodes clear
awaiting chemo
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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: Apr 14 2013 at 11:28pm
Delayne,

Yes, the stress and anxiety of a TNBC diagnosis is overwhelming.
A gentle remember to take deep breaths thruout the day.........seems many of us can forget this
     and shallow breaths can add to the feeling of stress.
One can not hear to many times there are many TNBC survivers/thrivers that one does not read
     about in alot of articles.
     Survivor thread: http://forum.tnbcfoundation.org/survivors-needed_topic8221.html

Yes, $10,000 is a staggering amount of money.
There are 3 places would suggest you consider calling about financial help resources:
    TNBC Foundation Helpline:   1-877-880-TNBC (8622)
           Monday through Thursday 9am to 7pm EST and Friday 9am to 5pm EST.
    Triple Step Toward the Cure:
            http://triplesteptowardthecure.org/how_applications.php
    A social worker at the hospital/medical center where you had your surgery done or the cancer
           center may be able to assist in helping you find financial resources,
In addition, you may find other appropriate resources on the following prior forum thread:
       http://forum.tnbcfoundation.org/financial-support_topic9427_post95771.html?KW=#95771

Delayne, I just posted some info on chemo and TNBC specialists on the other thread you posted on:
    http://forum.tnbcfoundation.org/chemo-protocol_topic11107.html
There is some related info on thread:
    http://forum.tnbcfoundation.org/oncologist-recommendations-from-members_topic5721_page3.html

Sounds like a good plan that you will follow up on seeing a certified genetics counselor re:
BRCA testing as you are under 60 years with TNBC......as well as having follow-up on your
Vitamin D3 status.    



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

Edited by Grateful for today - Apr 15 2013 at 12:43am
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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: Jul 17 2013 at 12:27am

Bumping up for new member who may have joined since April, 2013.    See 1st post.

You may have already seen the threads mentioned in the 1st post.   If yes, great.
If not, you may find something helpful in some of those threads.


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

Edited by Grateful for today - Jul 17 2013 at 12:28am
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