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TNBC - over 55

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Maureen0424 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Maureen0424 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 21 2012 at 10:19pm
I was diagnosed this March at 61.  I'll be 62 in 3 days.  What a birthday present!  I didn't meet any of the criteria either, and still feel like I'm living in an alternate universe.  
DX 3/9/12, Stage 2b, 2.2cm & 1/9 nodes, Grade 3, TNBC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Apr 21 2012 at 10:39pm
I was 58 and did not fit the criteria like so many tnbcers. I will be 63 in May.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2012 at 12:26am
I love Mainy's statement... paraphrased.  It's so true.   It's upsetting to many younger women on the forum-  but once here, we're one for all and all for one!
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2012 at 12:27am
add "see" in the appropriate area to that statement!  Editing wears me out. Embarrassed
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2012 at 3:11pm
Skyclaton, imho I think not allowing payment for genetic testing if you are diagnosed on or after your 60th birthday is a disgrace, what are they thinking?
 
I received my second dx at age 60 and it was at that time that I had the BRCA 1/2 testing done, my insurance is Federal.  This is a huge mistake.  Because of my testing, even though I wasn't in the typical age group for TNBC, my family then had the information they needed, I was positive for a BRCA 1 mutation so that they could test if it was their choice.
 
What am I missing here??  Because so many BRCA 1 women have TNBC this information needs to be known, the heck with one's age!  This knowledge can affect treatment not to mention the fact that one's family needs to have this information to consider their possible choices considering their personal risk.
 
Sorry about the rant..


Edited by trip2 - Apr 24 2012 at 3:18pm
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2012 at 3:30pm
Steve thank you so much for your wise thoughts and warm comments.
 
You are so loved and admired by all of us here.
 
This forum gives so many of us a strength, a bond, that I know I certainly have never
experienced before and I thank my lucky stars that you are all here, we are here together.
 
Love you all bunchesHeart
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Skclayton Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2012 at 3:51pm
Both my insurances are federal too.  They passed it effective jan. 1, 2012.  Had I been diagnosed at 59 years, 11 months, and 28 days, they would of paid for it...........
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2012 at 4:13pm
Having a Cancer dx and having to fight insurance companies is insane, so many have been thru the nightmare.  Have you considered appealing to your insurance company?
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Grateful for today View Drop Down
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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 24 2012 at 4:51pm
Hi,

Had posted the following on another thread on April 4.
Thought it might be helpful to repeat the info here.
This does not solve the problem but does give additional info to those reading this thread.



QUOTE=Grateful for today] Hi Skclayton,

Sounds like you have already researched and tried multiple ways to have the BRCA test via insurance.

As you said, as of January 1, 2012, BRCA testing is no longer a benefit with Tricare.

For those with other government funded policies:
The following seems to be the current situation in general:    (always re-check for one's own case)
           Medicare:   BRCA testing is covered when certain criteria are met.
               (Myriad will go over the Medicare criteria for BRCA testing when one calls Myriad)
           Medicaid:
                  Each state has it's own policy about BRCA testing.
                         Some states cover BRCA testing and others do not.
                  For those states that do have a benefit for BRCA testing, each state sets it's own criteria
                          for when BRCA testing is covered.

One last thought.
You mentioned that you have already appealed the insurance denial.
Believe after an insurance denial for commercial insurance products like BCBS/Aetna/United etc,
       there is an option for an outside external appeal.   This is sometimes coordinated by the
       insurance's member services dept or the consumer affairs dept or the grievance dept.
If you have not had an external outside appeal, you may want to consider if this is an option and
how to proceed with your insurance company.

With caring thoughts to you,

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


Just a FYI for all.
From Myriad website:
Myriad Financial Assistance Program
Myriad is able to offer testing at no charge to uninsured patients that meet specific financial and medical criteria. Due to regulatory limitations, patients who are recipients of governmentfunded programs (ie, Medicaid, Medicare) or those that have any third-party insurance are not eligible to apply.

                 
            [/QUOTE]

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



Addendum added:
Info from call to TNBC Helpline ( phone: 1-877-880-8622):
        Yes, call the TNBC Helpline re financial assistance for one's particular case.
        However, in many cases, The Helpline will also refer one to the Patients Advocate Foundation
               for additional financial assistance: phone 1-800-532-5274
                             website: http://www.patientadvocate.org/

                                             Judy

Edited by Grateful for today - Apr 24 2012 at 5:09pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote smaguire Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2012 at 2:34pm
Hi there. I'm new to the website/forum as well.  I was diagnosed with TN in November 2011 at the age of 54.  Had a lumpectomy on Dec. 21, started chemo in Jan. 2012 (last treatment on my 55th birthday in March), then radiation through April and May 2012.  Fortunately, the cancer had not spread to my lymph nodes.  I was off work for about three months...throughout my chemo treatments.  During that time I was very tired.  The nurses told me some people have told her that they felt great after the treatments, that they had more energy, etc. etc.  That didn't happen to me!! 
Now that I am back at work, I've had many people tell me they had breast cancer or they are breast cancer survivors.  The only thing, none of them had triple negative breast cancer.  I wanted to hear from someone that had TN....someone I could connect with. I am so glad I found this website and look forward to connecting, sharing, and learning!! 
 
Sharon
SMR
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Charlene View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2012 at 2:54pm
Hi, Sharon,
Welcome to this forum.  There are many knowledgeable, caring, compassionate people here.  While it is true that TNBC has a higher recurrence rate, there are still plenty of victims who survive.  I think my fatigue and "aches and pains" continued for about a year after treatment.  During my second year, I'm happy to say that I have been back to "normal."  I stopped going to a local support group because none of the other members were triple negative and didn't really know where I was coming from.  Please post any questions or concerns you have.  There is another very informative TNBC website--hormonenegative.blogspot.com.  Wish you the best. Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2012 at 5:21pm
Dear Sharon,
 
I have learned that when anyone starts sharing their own or someone else's breast cancer story you need to find out if it is Triple Negative or not.  There are as many scenarios of treatments as there are people, or so it seems.
Just today a lady told me her sister had breast cancer 2 years ago and is doing fine.  She then asked me how I did on the 5 year after treatment drug.  Come to find out, her sister had ER+, stage 1.  She took some radiation, but no chemo.  She is on tamoxafin and doing well.  For an instant, I felt angry, but then I told her about triple negative and shared with her that being 6 years from treatment, in my case, is very good.
My energy did not bounce right back and my fatigue, aches and pains, like Charlene, took at least a year to recover.  Actually I haven't fully recovered, but I do have a lot of arthritis, so I count my blessings each day.
You have come to a good place to share and know that "We Get It"....
 
God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2012 at 3:06pm
Lillie you make a great point!  Educating others about the different types of breast cancer is important. 
 
Welcome to the board Sharon.  We do feel "different" than most women w/bc, I understand completely.
 
This month I am 5 years out from second dx and like Lillie do not feel fully recovered.  Not so sure that is going to happen but I'm doing ok.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Skclayton Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2012 at 9:57am
Judy----just talked to a lady who had BCBS and had the BRCA tests at 68.  But since Jan 1, 2012, I was told that it changed due to the new parts of the Obamacare requirements.  The age of 60 is now the cutoff age.  I was 60 years and 6 months and am exempt now.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Skclayton Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2012 at 10:07am
I feel guilty reading all of your posts on how you do not feel well or are having a later than normal recovery.  So sorry.  I feel great and am back to riding my horses and walking a mile plus each day.   I was Stage 1, TN-IDC, no lump, BUT "chose" to have a bi-lateral mastectomy with behind the chest muscle reconstruction-----instead of a lumpectomy.  I wanted it GONE, gone, gone.......  I had 3 months of chemo and a total of 4 surgeries (from May 2011 to April 2012).  But now, I feel physically really great---except the emotional part of losing a 46 year old friend who was TN and BRCA2 positive.  She was cleared and then 15 months later it came back with a vengeance.  I was emotionally devastated.  It is so hard to be real positive when something like that is right in front of you.  So, I am enjoying traveling with my spouse and riding my horses as much as I can---- because "we just never know"...........    
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2012 at 10:43am
Dear Skclayton,
 
Please, never feel guilty for having a good recovery and being able to enjoy life again.  We all are different and affected differently by the mental and physical aspects of TNBC.  I am so sorry to hear about your friend.  It sounds as though you took all precaution in the very beginning of your diagnoses; maybe that is why you can feel so well now.  Although, you will most likely have some emotional baggage, long after this experience.  But don't let that keep you from seeing and enjoying the beauty of each day.
 
God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2012 at 12:58pm
Skyclayton I'm still trying to figure out why you can't get genetic testing, just had me puzzled.
I spoke with Steve last night and he mentioned the NCCN guidelines where one of the criteria for testing is that if one is diagnosed with tnbc under the age of 60.  Thought maybe they were using that as a guideline.  This just gets my goat!  Families need to know...
 
 
 
That is just wonderful that you are feeling well and enjoying life!
 
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nanc620 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2012 at 10:35pm
Hi Everyone,
I was diagnosed on Oct.1. 2012 at the age of 59.  Had a lumpectomy and sentinal node biopsy along with a port placed on Oct. 22.  Post op visit went well...pathology showed what was thought to be IDC was in fact medullary breast carcinoma.  Per my surgeon that is an easier cancer to reat...still TN but praying that chemo and radiation will take care of it.  Meeting my oncologist on Friday...keep me in your prayers and good thoughts.  I am finding strength and support here.

I stepped out of my comfort zone on Monday and went to Gilda's Club...and so happy that I did it!

Life is good...
DX 10/1/2012 Medullary breast carcinoma Triple Negative
Lumpectomy 10/22/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2012 at 3:00pm
Hi Nanc and welcome although very sorry you have to deal with tnbc.  So glad you went to Gilda's Club and that you are happy about it.  Support can make a big difference.
Please share with us anytime and let us know if we can help.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2012 at 3:04pm
Skyclayton while at the Force conference a couple of weeks ago I asked our question re not brca 1/2 testing over the age of 60.  I was told by one of the doctors the reason is because they say they wouldn't find enough in that age group.  Wasn't satisfied with the answer but that's me.
Stage 2 2003
Stage 1 2007
BRCA 1+
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