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TNBC - over 55

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Topic: TNBC - over 55
Posted By: memeb
Subject: TNBC - over 55
Date Posted: May 31 2011 at 5:56pm
I'm new to this forum and am wondering if there are any ladies with tnbc who are over 55.  I am 68 and understand that most tnbcers are young women. 
I have just had 3 tx of the DD AC and am so weak after this last tx - wondering if everyone has this same se.  A friend had told me that she worked thru her chemo (not tnbc - and she is in her 30s), but I had entered this with the expectation that I might be nauseous and tired, but was not prepared for the extent of the fatigue.  Maybe my friend is just tougher than me - but just wondering??
 



Replies:
Posted By: 123Donna
Date Posted: May 31 2011 at 7:32pm
Hi Memeb,

It's true TNBC strikes many young women, however, it also strikes women of all ages.  I was 49 when diagnosed.  There are many women on this forum who are over 55.  Hopefully they'll stop by to say hello.  Chemo is tough and we all experience the side effects differently.  I also think as we get away from treatment, we forget how hard it was.  An analogy is childbirth.  It's painful while we're going through it, but somehow our bodies and mind allows us to forget about it after it's happened.  Otherwise, no one would have the second child!

Donna


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



Posted By: mainsailset
Date Posted: May 31 2011 at 7:39pm
Hi, lots of us out there over 55, so many in fact that I often wonder who the guy was who put those stats together! Unfortunately there are many young women who come here, but once here, we're one for all and all for one!
  Welcome!


-------------
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear


Posted By: Charlene
Date Posted: May 31 2011 at 7:53pm
Hi, Memeb,
 
I was diagnosed at 59.  I did four rounds of TC every 3 weeks, but there is no way I could have worked during that time.  (Maybe during the 3rd week, but I would have been dragging, I'm sure.)
I have a teacher friend in my age group who did 4 AC and 4 T, every other week.  She had chemo on Thursdays and went back to work the following Tuesday.  I am still amazed at her strength.  My advice would be to take it as easy as possible and remember that this too shall pass.  I 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


Posted By: Genie
Date Posted: May 31 2011 at 8:34pm
Welcome Memeb,
I was diagnosed at age 67, my sister at age 60 and my niece at age 38. Yes, that 3 in my family with TN with me being the last one diagnosed. My niece & sister both elected to have lumpectomies, chemo and radiation. Because of the family history (all negative for BRCA), I elected to have a bilateral mastectomy followed by chemo. Chemo was very hard on me also. I ended up being hospitalized after my last 2 treatments (taxotere & cytoxan).

My niece has been cancer free for 12 years, my sister for 11 years and it's been 3 years for me. TN is no respecter of age as you can see. I think Donna & Charlene gave you some good advice. The symptoms of chemo vary with everyone. Do take care of yourself and give yourself permission to be self indulgent. Most of us have spent our lives taking care of children, husbands & others and this is definitely the time to put yourself first.

May God bless you through this journey,
Hugs from Texas,
Genie


-------------
DX 3/10/08 at age 67, IDC. Stage 1, Grade 3, 1.5 cm.
KI-67 99% at MX . Bilateral mastectomy 4/1/08 Node-, BRCA 1/2-,BARD1+, TX:Cytoxan/Taxotere x4,3 in family with TNBC


Posted By: Lillie
Date Posted: May 31 2011 at 9:07pm
Hello Memeb,
You are not the only "ole fogey" diagnosed with TNBC. I was 65 when diagnosed. I turned 70 this past January. I was working full time when diagnosed, but took 6 1/2 months off of work. There was no way I could have worked. After diagnosis I had a mastectomy on my left side. 1 lymph node was affected. You will see that I had 4 DD A/C and then 4 DD taxol and gemzar.

Actually Genie who posted above me is my "twin sister". Well, we pretend we are. Same age, both been married 50 years and I think we resemble each other a lot.

Fatigue is normal and after all, we deserve a break. Be kind to yourself and keep posting and let us know how you are doing.

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 - 11/2018-12 yrs NED


Posted By: mainsailset
Date Posted: May 31 2011 at 11:41pm
On the fatigue thing, I must have been an exception. I had so much energy and didn't sleep more than 4 hours a day the whole time. I had to drive for the first 3 weeks every week 7 hours round trip to get to the doctor for infusions and never had a bit of a problem. I worked the whole time I was getting treatment. I think they slipped something in my pre meds because it was just nutty!


-------------
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear


Posted By: SagePatientAdvocates
Date Posted: Jun 01 2011 at 1:15am
Dear Mainy,

yes, I believe you were an exception...but then again you are an exceptional woman...you truly are..we are blessed to have your smarts and support..

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


Posted By: Lillie
Date Posted: Jun 01 2011 at 9:19am
Dear Mainy,

I am thankful that you were spared the fatigue. Having to drive for treatment would have been difficult if you had a lot of fatigue. Maybe they slipped some extra go-juice into your chemo concotion.

Yes, I always enjoy your posts. You give us lots of good information and food for thoughts.

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 - 11/2018-12 yrs NED


Posted By: judylynn
Date Posted: Jun 01 2011 at 11:11pm
Newbie,
 
I am 59 and was diagnosed in August with metaplastic, triple-negative, breast cancer.


-------------
TN metaplastic breast cancer; had mastectomy; completed chemo and radiation


Posted By: Lillie
Date Posted: Jun 02 2011 at 9:13am
Hi Judylynn,

Welcome to the TNBC site. I bet you've figured out by now that this is a friendly, caring, loving, knowledgeable, group of ladies from early 20's to 80 something.
I'm sorry you need to be here, but so glad you found us. Please continue to post and let us know of your success.

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 - 11/2018-12 yrs NED


Posted By: Lillie
Date Posted: Jun 02 2011 at 9:14am
OOPS Judylynn,

We also have friendly, caring, loving, knowledgeable men on this site also.

Sorry Steve.

Love,
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 - 11/2018-12 yrs NED


Posted By: Carol (Tenn)
Date Posted: Jun 02 2011 at 9:27am
Hi everyone,
I am too an oldie but goodie....I was diagnosed at 66 and I am a almost 3 yrs survivor.
 
I want to take this opportunity to invite you all to the Spiritual Support thread if that is something you might be interested in. We are group of loving caring encouraging prayer warriors. You can share your feelings about anything favorable or un. We hope to see you there.
Love and prayers,
Carol


-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: Karen O
Date Posted: Jun 02 2011 at 10:34am
I was 56 when diagnosed; lumpectomy, A/C and taxotere, and radiation.  Recurrence in December 2010, Stage IV bone mets and skin/gladular mets on chest.  Tried Xeloda and Gemzar (no results) but that's all they could give me because I had an extravasation of my medi-port and it took 10 weeks to heal.  Now on Navelbine, and it has been responding but as soon as I go on my "off' week, it comes charging back.  Just had 6 month scans/MRI, and most areas are relatively stable, with some new lesions on hip, left mandible, some extension in my spine (t-3-6 instead of t-3-4 in December) and two on skull.  Since I've done so well on the "Navy Bean" with great blood counts and few, but manageable side effects, they are extending my dose cycles to 4, or even 5 weeks before a week off, as long as my counts stay good.  I will also be referred to the Baylor/Sammons Cancer Center in Dallas (Dr. Joyce O'Shaunessey) soon for the extended PARP trial they are enrolling.  And of course, will have more rads to spine area now, and maybe jaw.  I'm so thankful nothing is showing up in organs!! 
 
I just turned 59 in May, and I'm still working full time.  Everyone resonds in their own way to cancer and chemo, and we all just need to take it a day at a time and rejoice in all that God gives us and  that his hand is constantly upon our shoulder.  For if God stands with me, who can stand against me?


-------------
Stage III ICD/TNBC 9/07; lumpectomy A/C/Taxotere+rads; Stage IV bone mets 12/10. Xeloda and Gemzar, no good. On Navelbine + rads


Posted By: memeb
Date Posted: Jun 02 2011 at 10:39am
Hello to All!  Thanks to all of you for replying and for your uplifting comments!  It is good (and very sad) to know that there are more of us"oldie but goodies" going down this road.  But I feel like it is good to talk with others in the same age group who are in the same condition, so THANKS for your help!
I saw the Onc yesterday, and found out I was dehydrated so got IV fluids and nausea meds and am feeling better today. 
It is so good to hear from you sweet ladies who have passed the 3 yr mark and still going strong - that gives me such hope!  I WILL make it thru this, but definitely want to continue to draw strength from all you new sisters in the cause! 
{{{{HUGS}}}}
MemeB


Posted By: Karen O
Date Posted: Jun 02 2011 at 11:03am
Sorry you had to get dehydrated...DEFINITELY drink a LOT when you're on the A/C stuff... !!!  Push that water down daily!  It flushes the toxicity out of your system faster too.   Never hestitate to ask questions; as the saying goes, we've all "been there, done that" and we all have great advice/remedies/what worked for us for you to try.    And most of all, we all have great HUGS to give each other !!

-------------
Stage III ICD/TNBC 9/07; lumpectomy A/C/Taxotere+rads; Stage IV bone mets 12/10. Xeloda and Gemzar, no good. On Navelbine + rads


Posted By: mainsailset
Date Posted: Jun 02 2011 at 11:06am
memeb, the dehydration thing is a big thing, I'm so glad that was caught early on for you!
  What I didn't mention before was I have felt that all of us, but the older ladies moreso I think, find that 'fixing' things takes longer than they did when we were spring chickens! I found that during and after chemo my thyroid was out of sync and it literally took a year for that to more or less shake out and even now it can still fight me.
  After chemo my muscles were basically non existent and it has taken forever to get them even sort of up to speed, none of that work out for a month or so for me, it's taken a couple of years!
  So what I've learned is to go at things slowly, try and treat your whole body not just the aches and pains that hang around after treatments because sooner or later it all comes together.
  I go in next week for my checkup, I'm 2 months late going because the mountain pass has been closed and I have to say I have a fair amount of anxiety to see how I'm doing...I chastise myself for 'being weak' but then I just feel guilty so there's nothing more to do but just get it over with. In July it will be 3 years since dx. It seems like forever.
 


-------------
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear


Posted By: Carol (Tenn)
Date Posted: Jun 03 2011 at 1:28pm
Karen O
Please come join us at Spiritual Support thread. It's not a replacement for other threads, just an add to....Love and Prayers, Carol


-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: Karen O
Date Posted: Jun 03 2011 at 1:59pm
Thanks, Carol!  I do go 'lurk' in there... it's very uplifting, and I enjoy the posts.

-------------
Stage III ICD/TNBC 9/07; lumpectomy A/C/Taxotere+rads; Stage IV bone mets 12/10. Xeloda and Gemzar, no good. On Navelbine + rads


Posted By: cheeks
Date Posted: Oct 09 2011 at 5:29am
I know i'm late on this post but i was 52 at diagnosis and post menopausal. I stayed pretty "wired" through all of it and was actually walking 5 miles every evening after my surgery and through chemo and i had never been an exercise person before. Maybe it was just my body's reaction to everything that was going on...I certainly don't walk 5 miles anymore in this south Florida heat. I only remember being really tired a few times during treatment but these days i certainly give myself plenty of permission to rest as I like so many woman hold this family together. 

This may not seem funny but one day our 26 year old son said, "Mom, the only good thing i can think of about your cancer and treatment is that Dad is sure doing more around the house than he ever has done." I had to laugh!








Married 33 years with two sons age 26 and 28


-------------
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.


Posted By: stardog
Date Posted: Dec 26 2011 at 11:09am
I was diagnosed in Sep 11 at the young age of 61.  I too have read that it mostly affects younger women, maybe our bodies think we are younger than we really are!Embarrassed


Posted By: Carol (Tenn)
Date Posted: Dec 26 2011 at 11:19am
StarDog,
 
I was 66 when diagnosed....I like that thought!
 
Welcome to TNBC forum. I'm not happy with the circumstances but I am happy you found us. You won't find a group of more loving, encouraging, knowledgeable people anywhere. We know what you are going through...we know what will go through..and we are here to help any way we can.
 
I'd also like to invite you to join us in the Spiritual Support thread if that is something you might be interested in. There you will also find caring, loving and supportive Christian prayer warriors.
 
Again, Welcome!
Love and Prayers,
Carol


-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: *Nancy
Date Posted: Jan 27 2012 at 12:10pm
I was diagnosed right after I turned 54 and I am having my 56th birthday next month. When I started researching TNBC, I was very surprised that I did not match any of the usual risk factors for this disease. (At first it made me question if I was diagnosed correctly.) It just goes to show that there are no "rules" for anything. We are the ones who skew the statistics.

-------------
Dx March 2010, age 54, 5 mm tumor, Stage Ia, Grade 3, 0/3 Nodes, Ki-67 70%,

Lumpectomy April 2010, TC x 4, Rads x 33, Treatment completed Sept 2010, NED 06/17


Posted By: Lee21
Date Posted: Jan 27 2012 at 12:18pm
Me too. I didn't fit the stats either.

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


Posted By: Carol (Tenn)
Date Posted: Jan 27 2012 at 2:56pm
Me three

-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: cheeks
Date Posted: Jan 27 2012 at 3:02pm
me either - post menopause - maybe that's why there are subsets of TN



-------------
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.


Posted By: Charlene
Date Posted: Jan 27 2012 at 4:39pm
Nor did I.  But, I am thankful to have been as old as I was (and am).  It breaks my heart every time I read about a young woman being a victim of this disease.  I think it's so unfair.
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


Posted By: Lillie
Date Posted: Jan 27 2012 at 5:22pm
I don't fit the mold either. And also my heart breaks for the young women and mother's who are diagnosed. Also, the mothers with teenage and college age children. It is so unfair.

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 - 11/2018-12 yrs NED


Posted By: *Nancy
Date Posted: Jan 27 2012 at 5:35pm
I had 3 (of my 6) children at home when I was diagnosed: a freshman (son), sophomore (son) and junior (daughter) in high school. It was hard on them to watch me go through it all. Just recently, one of my sons has started to have panic attacks, yet no one else in the family has ever gone through anything like that before. We're wondering if it's a delayed reaction, in part, to what he saw me go through. Or maybe it's just that he's a teenager? We're taking him to counseling, so I hope we can find some relief for him.

-------------
Dx March 2010, age 54, 5 mm tumor, Stage Ia, Grade 3, 0/3 Nodes, Ki-67 70%,

Lumpectomy April 2010, TC x 4, Rads x 33, Treatment completed Sept 2010, NED 06/17


Posted By: BamaRachel
Date Posted: Jan 27 2012 at 9:58pm
I, too, am an "oldie."  Diagnosed last year at age 58. 

-------------
DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.


Posted By: Genie
Date Posted: Jan 28 2012 at 10:27am
Count me as an "oldie" also. Diagnosed in 2008 at age 67. Will celebrate 4 years NED this year!

-------------
DX 3/10/08 at age 67, IDC. Stage 1, Grade 3, 1.5 cm.
KI-67 99% at MX . Bilateral mastectomy 4/1/08 Node-, BRCA 1/2-,BARD1+, TX:Cytoxan/Taxotere x4,3 in family with TNBC


Posted By: TNBC_in_NS
Date Posted: Jan 28 2012 at 10:01pm
Me too! I was 56 almost 57 when diagnosed the first time in 2009, then again in June 2011 at (60)six months after returning to work. No chemo or rads second time around. Just BMX. Back to work Nov 2011 but only three days a week.

-------------
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear


Posted By: trip2
Date Posted: Apr 02 2012 at 3:24pm
I was dx at ages 56 and 60, now working on 5 years for a second time.


Posted By: HappyGoLucky
Date Posted: Apr 02 2012 at 4:20pm
Hey Ms Pam  trip2
 
You helped me so much in April 2009 and all the years thereafter, and I won't ever forget all the times we told you to take a break and step away from the keyboard..you are always in my thoughts and prayers. Love youHeart
 
Karen


-------------
2/2009 7cm tumor, sent nod. pos. Lumpectomy 3/19/09,a/c dose dense+avastin clinical trial, taxol avastin stopped with pneumonia. 33 Rads 01/2010 ~ reccur 2011 supraclav.and internal mammary nodes. rad


Posted By: SagePatientAdvocates
Date Posted: Apr 02 2012 at 4:56pm
Dear Pam,

So nice to see you posting...You have been deeply missed. 

I have confidence that if you re-enter the posting part of your life, you will do so carefully and with respect for your mind/body.

As you can see, re-entry is seamless and it will always be for you because you are deeply loved. Sure, many new names but the same dynamic on the board still exists. A respectful resource where women and men can come for support, and to learn, and we have tried to add some difficult topics, as separate forums, that many may not wish to read about on the main forums such as Palliative Care as in Supportive Care Services and also, Hospice. Unfortunately, as you can see, if you chose to read the Tributes section we have had to suffer awful losses in the last months. As our membership increases, it stands to reason that there will be more to come and I want you to be prepared for that. Please make sure you are aware before you jump back in. I know you have seen a lot and dealt with a lot over the years, Pam, and again I trust your instincts but please think about what forums you are able to assimilate if you decide to actively come back. 

The site has become more active and the pace of threads is faster. I have asked about whether it is possible to get a larger number of threads on the first page because I find it hard to keep up. That seems to be a major, complicated, project not possible, I am told, now, unfortunately.

Please pace yourself and know, in advance, that whatever contributions you make will be important, and valued, as they always have been. 

You are deeply loved by our TNBC family and always shall be.

And please, if you decide you need a break, at any time, just take it. No explanations are needed. 

As far as I am concerned this site would not have developed in the beautiful way it has without all of your hard work and nurturing. You have done a magnificent job for all of us and your spirit is still what we emulate. Pam, I deeply, deeply admire you.

Thank you for being you and I hope you can post without it being too stressful.

with my love and prayers and ++++++ vibrations for a good, non-eventful, recovery,

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


Posted By: HappyGoLucky
Date Posted: Apr 02 2012 at 5:20pm
Love you much Steve!
 
Karen


-------------
2/2009 7cm tumor, sent nod. pos. Lumpectomy 3/19/09,a/c dose dense+avastin clinical trial, taxol avastin stopped with pneumonia. 33 Rads 01/2010 ~ reccur 2011 supraclav.and internal mammary nodes. rad


Posted By: Skclayton
Date Posted: Apr 02 2012 at 7:33pm
Did you all know that the new medical rules---as of jan 1, 2012--- does not allow payment for the genetic testing if you were diagnosed on or after your 60th birthday?.   Even if you are triple neg and met all the medical criteria.  And they blocked all fed based insurances from paying for it under any circumstances.  I know.  I have BCBS and Tricare.  I was just advised that both turned the testing down for the above reasons.  I was diagnosed 5 months past my 60th birthday.  


Posted By: Skclayton
Date Posted: Apr 02 2012 at 7:42pm
I was diagnosed last year at 60---only 4 months after I retired.  Just had 2nd reconstruction surgery today.  Did not fit any of the criteria.  Active horsewoman who does not drink, smoke, and no family history of any type of cancer.  My father still swears they mis-diagnosed me.  Ha.  Caught with mammogram at stage 1.  I truly feel mine was brought on by severe stress ( worked last two years with the boss from your nightmares).


Posted By: Grateful for today
Date Posted: Apr 02 2012 at 9:27pm
Originally posted by Skclayton Skclayton wrote:

Did you all know that the new medical rules---as of jan 1, 2012--- does not allow payment for the genetic testing if you were diagnosed on or after your 60th birthday?.   Even if you are triple neg and met all the medical criteria.  And they blocked all fed based insurances from paying for it under any circumstances.  I know.  I have BCBS and Tricare.  I was just advised that both turned the testing down for the above reasons.  I was diagnosed 5 months past my 60th birthday.  


For BRCA testing after January 1, 2012:

See also:
    http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458.html - http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458.html


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


Posted By: mindy555
Date Posted: Apr 05 2012 at 10:40am
memeb-

Love your name!  My grandkids call me meme.  Sounds a bit narcissistic doesn't it?  ha!  Maybe should have changed the spelling..

Anyway, you can add me to the 'over 50 gang'.  I was a few months into 56 (going on 21) when I was diagnosed and post menopausal for 5 years.

My mother was diagnosed with breast cancer at age 38 (or maybe 39. My calculations are poor-memory based).  There's strong evidence the BRCA gene mutation was inherited from Mom's side since my maternal grandfather was of Ashkenazi descent- although Mom was the only family history of breast cancer to my knowledge and no known history of ovarian cancer.  Mom's sister, my aunt recently tested negative.  My dear mother survived breast cancer just shy of 30 years. Back then she was given a radical mastectomy and harsh radiation.   Due to her young age I imagine she too was Triple Negative.  She took no "after drug." She later developed AML and died at age 67- still much too young as far as I'm concerned.

One of the most disturbing aspects of this disease is the number of very young women diagnosed daily with TN.

Welcome to the old folks home!  LOL  Wink


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


Posted By: Maureen0424
Date 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


Posted By: krisa
Date 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.


Posted By: mindy555
Date 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


Posted By: mindy555
Date 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


Posted By: trip2
Date 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..


Posted By: trip2
Date 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


Posted By: Skclayton
Date 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...........


Posted By: trip2
Date 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?


Posted By: Grateful for today
Date 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/ - http://www.patientadvocate.org/

                                             Judy


Posted By: smaguire
Date 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


Posted By: Charlene
Date 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


Posted By: Lillie
Date 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 - 11/2018-12 yrs NED


Posted By: trip2
Date 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+


Posted By: Skclayton
Date 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.


Posted By: Skclayton
Date 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"...........    


Posted By: Lillie
Date 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 - 11/2018-12 yrs NED


Posted By: trip2
Date 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...
 
https://www.breastsurgeons.org/statements/PDF_Statements/BRCA_Testing.pdf - https://www.breastsurgeons.org/statements/PDF_Statements/BRCA_Testing.pdf
 
 
That is just wonderful that you are feeling well and enjoying life!
 


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Nanc620
Date 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


Posted By: trip2
Date 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+


Posted By: trip2
Date 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+


Posted By: dldlogan
Date Posted: Nov 10 2012 at 4:32pm
I am 62 now, was 61 at time of diagnosis and mastectomy.  I did not ask for genetic testing.  I told my daughter to get it done though.
 
Perhaps the doctor at that conference figured any one at our age who would have been positive would have been dead...a waste of their time and money to test on people they can't help.
 
I guess I'm a little out of it today.  Chemo last Thursday and things just hit me harder right now.
I'm still trying to come to terms with not having reconstruction at the time of my mastectomy.  The plastic surgeon simply refused because he thought I was too high a risk.   Oh yeah, he may consider it after all my other treatments...yeah like I'll ever go back to him.Cry
 
I still haven't connected with my oncologist.  She asks questions, I answer...Hi, bye.
 
Sorry for the outing, I guess I need somewhere to dump this.  I don't mean to offend anyone.
I love having a place to go and read all I can of other peoples experiences. It helps me try to keep my experience in perspective as best I can.
 
Lots of love to all,Hug
Diana
 
 


-------------
Diagnosis 6/25/12
Biopsy 7/20/12
Mastectomy 8/15/12
IDC 1.9 cm TN Gr 3 Stage I
Chemo Start 9/27/12 ACT
Done 3/7/13
BRCA Neg
Reoccurence-Lung 12/3/13-Biopsy 12/16/13 Brain MRI 2/20/14 Stage IV


Posted By: Lillie
Date Posted: Nov 11 2012 at 1:31pm
Dear Diana,
 
Dump away sweetie.  I don't think anyone will be offended by your post.  I thank God regularly for having this dumping ground where others totally understand.
 
I am wondering why the plastic surgeon considered you to be "too high a risk" for reconstruction.   If it truly is out of concern for your health, good.  If there is some other agenda going on, I would want to know, WHY?   Also, it sounds like your oncologist is a Ghost.   Is there any way that you could find another oncologist with whom you could have a "real conversation". 
 
Please keep sharing and outing.  We will continue to care and help all we can. 
 
Love and 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 - 11/2018-12 yrs NED


Posted By: trip2
Date Posted: Nov 15 2012 at 5:09pm
Hi Diana,
 
I hear you and I'm certainly not offended!  The doctor did not explain further but I wish there had been more time because I have seen several "older" women diagnosed with TNBC in this forum.  I would be guessing here but suppose it is because the majority of women with tnbc are younger but that doesn't satisfy me.
I'm so glad you suggested to your daughter to be tested.
 
You have every right to dump, please anytime.  We get it here.  I'm so very sorry you are having a tough time.  It's not easy but we get thru it.  If we can help in any way let us know.
 
I hope you are feeling better by now.  Chemo can be cummulative.
http://www.livestrong.com/article/144028-cumulative-side-effects-chemo/ - http://www.livestrong.com/article/144028-cumulative-side-effects-chemo/
http://www.cancercare.org/publications/24-understanding_and_managing_chemotherapy_side_effects - http://www.cancercare.org/publications/24-understanding_and_managing_chemotherapy_side_effects
 
Did you look thru the "chemo tips" section in the TNBC News/Resource area?  Those ideas were compiled by our members.
 
I went thru a bil mx 5 years ago w/no recon, it's tough.  I don't know why your doc said you were high risk but I'd certainly get another opinion.  I have read many times this can be done at a later time as long as you are not at risk of course.
 
That is so hard when you don't connect with your Onc..  Do you like the nurses?  I found my first Onc to be very cold and distant, perhaps it was his nature or his defenses working but I called him Dr. Iceburg.  The oncology nurses at my care center were very nice and extremely helpful.  I called whenever I had questions or concerns so you might try that angle and see if it helps.
 
You are welcome to PM me if you like..keep us updated on how you are feeling.  Hope you have good support at home.


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Skclayton
Date Posted: Nov 21 2012 at 9:00pm
FOR INFO FOR ALL:  When I originally had my diagnosis, I had every test out there for the lymphoids.  Everything was negative----the biopsies, the MRIs, the CT/PET scans, and even when I had the bi-lateral mastectomy lab results, all was negative.  So, I just had the chemo treatments.  Been done, hair back, feel great!!

I never have back aches and recently I had one for a couple weeks, so I insisted on a CT/PET scan.  Guess what?  Everything was normal----EXCEPT two lymphoids lit up.  The doctors were in shock.  I had the biopsy this morning and they are definitely positive.  No symptoms, no nothing.  My doctor swears I have a 6th sense.  So-----next week is surgery and then 5 weeks of radiation---at 5 times a week.....then a couple months of chemo. 

So, just because you feel great and your regular quarterly tests come back normal, think about this.  As my doctors said, this is a shock to all of them and by the time I would have started to have later symptoms, It could have been too late.  This was discovered by accident.  Now, they are waiting to find out if this is TN or hormonal (I guess you can have both)???!?!?!?!

My spouse and I are actually very happy right now.  Just think if I had not discovered this now?  We feel blessed.


Posted By: 123Donna
Date Posted: Nov 21 2012 at 11:52pm
Skclayton,

Which lymph nodes were positive?  The axilla area?  Glad you had the 6th sense and hope your upcoming surgery and treatment gets you back to NED.  My story is very similar to yours.  I was having absolutely no symptoms and a routine PET scan showed activity in an internal mammary node.  
Please keep us posted on how you are doing.  Have they told you what type of chemo you'll be getting?

Donna


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



Posted By: Skclayton
Date Posted: Nov 22 2012 at 7:58am
Donna---just got the scan news on Tuesday evening at 5 pm and had the biopsy at 8 am yesterday morning.  The pathologist was in the room while they did the biopsy and ran them out.  Before I got dressed, they came and told me they were positive ---but would tell me more by Monday evening.  I would be having everything today---except for the Holiday weekend.   I have two more scans Monday morning and was told I would be in surgery by Thursday or Friday.  Did not give specifics on where they are.  I know they are under my left armpit area---right next to reconstruction implant.   I was told that they will have to remove the implant for the surgery.  Confused  Like Diana, my 62nd birthday is Thursday.  I was joking with them and told them ---"if you are going to take one---you need to take two.  I did not want to go around lop-sided for five months.  ha  I had originally had the reconstruction behind the chest wall muscle (highly recommended for horse ladies).  I kinda' enjoyed---at 61---having smaller boobies and going around with no bra---even when I rode my horses.  That is the reconstruction I liked.  ha


Posted By: trip2
Date Posted: Nov 29 2012 at 2:26pm
I'm so glad you spoke up and had the scan, good for you.  Thinking of you today and hope your surgery goes smoothly.

-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Skclayton
Date Posted: Dec 01 2012 at 5:11pm
After extensive MRIs, CT/PET scans, detailed bone scans, kidney/liver detailed scans, and biopsys, it was determined the cancer came back in only two lymphnoids.  No where else.  Had those removed yesterday and prognosis looks good.  They will determine whether the new cancer was TN again or has some hormonal diagnosis.  I am so blessed to have found this early.  Totally caught the doctors off-guard since my NOIDS were all negative when I got diagnosed 1-1/2 years ago.  All NOID tests were negative back then.  After reading the research-----if TN comes back, it is normally in the organs---so really feel blessed.  I will have to do 5 weeks of radiation and then move on with life.  Smile


Posted By: Grateful for today
Date Posted: Dec 06 2012 at 1:22am
Skclayton,

What a good 6th sense you have.......and thank goodness.
So sorry to hear the news.
Glad you updated us. Glad the MRI/CT's etc were negative.

Sending lots of positive thoughts and wishes to you as you start your radiation.

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


Posted By: Skclayton
Date Posted: Dec 06 2012 at 7:27am
Got the call last night.  They took 21 NODES on my Friday surgery.  Four of the 21 were positive.  The surgeon was very glad we went that route and got it out.  I will now have radiation for five weeks and chemo after that.  They are testing the positive NODES to see if they are still TNBC and had not flipped.  So, onward we go.........................  The CU Breast cancer center is in shock over this.  I am the talk of the Oncology department.   HA


Posted By: arabella
Date Posted: Feb 03 2013 at 9:04pm
I have just recently been diagnosed with Triple Negative, Lymph negative (12 where checked in an axillary dissection and all negative), Stage 1, Grade 1.  I am 63.  My doctor said that he "hates" to give me chemo and would consider looking at the oncotype dx test to see if that would help in treatment plan.  He said without this test, he would give me chemo, but that it wouldn't be heavy duty....something about 4 rounds.  I quit listening and concentrated on the oncotype dx test in the  hopes I can avoid chemo.  The lab called this past Friday about my insurance and all (this test is over $4,000) and I asked if it wasn't very strange to be performing it on Triple Negative.  I was told that some doctors will call for it with Triple Negative cases and Lymph node positive cases.   This test is for hormone receptor positive and lymph node negative.  Anyway, I was delighted to think that I may  not have to have chemo.   I am having scans done....bone, pelvic, abdomen, chest and colon....ct scans with contrast dye.

Is anyone else familiar with this oncotype dx test?  Has anyone escaped chemo because of this test?  Anyone out there like me, with Stage 1, Grade 1....lymph negative....?

TIA for any advice anyone can offer.



Posted By: Skclayton
Date Posted: Feb 04 2013 at 9:45am
Please be careful with "under-treatment" with TNBC.  It is very aggressive.  I had same diagnosis as you and I am 62.  But--although all NODES was negative, I did decide to go aggressive and have 4 treatments of chemo. Considered very aggressive for Stage one.  I had all the tests you listed and all tests were negative for the NODES---biopsies, MRIs, CT/PET scans, organ MRI, detailed bone scan, and several nodes tested when I had the bi-lateral mastectomy surgery.  All negative for nodes.  All was good.  

BUT
........A year later, 4 nodes showed up positive (found by accident---same side).  I am now undergoing 8 treatments of heavy duty chemo and radiation (4 of "AC" and then 4 of TAXOL).  Please stay on top of all of this.  Be careful and research the TNBC.    It is nothing to play with................


Posted By: Charlene
Date Posted: Feb 04 2013 at 10:15am
I certainly agree that the TNBC diagnosis is something to take very seriously.  A second or third opinion is well worth the time spent.  I think it's also important to note, however, that extremely aggressive treatment is not always successful.  From being on this forum, I think I have learned that there are many different types of this triple negative disease and that no single treatment regimen is a guarantee of no recurrence.  If one existed, it would be called a cure.  I think each of us has to learn as much as we possibly can, in the short period between diagnosis and treatment, while we are under tremendous stress, and to choose the route that we feel is best for our particular situation.
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


Posted By: Skclayton
Date Posted: Feb 04 2013 at 12:14pm
So true!  no guarantees.  From everything I have read, TNBC either responds to chemo or it doesn't.  If it does, chances look pretty positive.  If it doesn't, the long-term results do not look positive.  WE are all so different.  Scary stuff to deal with........................


Posted By: arabella
Date Posted: Feb 06 2013 at 11:13am
Thanks, Skclayton and Charlene, to you both for responding.  After I posted the above, I met with another doctor, who I greatly respect and I am now going for a second opinion at UAB with a Breast Cancer Expert Oncologist.  My appointment is 2/19th (almost 2 wks. away) and I really wish it were sooner.   I think I am now  just beginning to realize and really wrap my head around  how much I have to fight this thing and beginning with the right treatment is so important.    I so hope I am one who responds to chemo.  

You know, I went in to meet with the oncologist I mentioned above with the attitude that I would surely have chemo, etc., and I knew enough to know that TN is very different, but during that consultation he somehow made me think that I really might get by without chemo....something about the way he talked to me, I started thinking that it was so small, low grade, etc., that MY cancer was different.

Again, I thank my other doctor, and you two as well for bringing me back to my good senses.
Hope you're doing well with your current treatments, Sk.  How did they find the positive lymph nodes by accident???  From a routine test....or by touch?

Warm regards to you both.


Posted By: arabella
Date Posted: Feb 06 2013 at 11:48am
Skclayton.....I just went back and reread previous posts which mean more and more to me as I am coming to understand this disease.  That's really something about the way you found out about positive nodes, etc.  I can relate to your history in that it seemed to be "not too much" in the beginning which is where I am.    We are all different, but we can learn from each other.  I don't want to put my head in the sand for one minute for sure.   Thanks so much for calling this to my attention!  Your response could be a life saver for me!  


Posted By: Grateful for today
Date Posted: Feb 06 2013 at 1:44pm
arabella,

When I read your post, a thought came to mind.
Some times there are appointment cancellations.
If there are no cancellations/or you can not get an earlier appointment, it's good that you already
have the Feb 19 appointment. Good work getting a consult at UAB.
Think you said travel to UAB might not be easy....and the present plan might be the best plan all around.
However, just a thought.......would you consider calling the UAB appointment office to see if they had
any cancellations for tomorrow Thursday for a TNBC expert?   Think another member posted she had
an UAB appointment on a Thursday to see Dr. Forero-Torres a TNBC expert.   This is providing you
can get a ride.
Again, providing you can get a ride, if there are no appt cancellations for tomorrow, would
you consider asking about other cancellations for a TNBC expert or do they have a
cancellation list........and emphasize you are TNBC and the consult is very important for your
chemo decision?


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


Posted By: arabella
Date Posted: Feb 06 2013 at 2:52pm
Thank you so much, Judy, for your kind, caring suggestion.  I'll see what I might possibly could swing.


Posted By: beck
Date Posted: Feb 06 2013 at 3:30pm
im 63 year old,1 yr. out from tn, mine was stage 1 no nodes, i was given lumectomy, chem 6 treatments, cmf, i would go two weeks in a roll, and that was 1 treatment , so i had to go 12 times, to get 6 wow... then i had 33 rad. finished in sept 2012 , i was given chemo because of the tn.


Posted By: mindy555
Date Posted: Feb 06 2013 at 7:17pm
beck-

Just wanted to tell you I've enjoyed reading your posts.  I haven't been as active lately,  although our forum family remains my life-line.

Thanks for sharing your experiences.


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


Posted By: beck
Date Posted: Feb 07 2013 at 9:20am
thanks mindy i enjoy writing them, i can relate to women on here, they get it,how are things in OK. my dad was born in bristal OK, Il. is snowy today, Granddaughter did her firts solo driving yesterday, she lives with us , since she was 3, man it was nerve wracking like the first day of kindergarten for me Beck


Posted By: mindy555
Date Posted: Feb 09 2013 at 2:39pm
Hi beck, It was nice last week.. sunny, cool.. perfect for walking or outdoor activity. Unfortunately I was stuck behind a desk of work.  I know Bristal OK.. I believe it's on the way to Tulsa.  My long-time friend's dad, now deceased owned the funeral home in Bristal. 

Congrats to your granddaughter! LOL That takes me back to those first nail-biting drives with my kids.. especially my son who was so close to running a 4 way stop sign with a police car at the intersection just to the right of us.  I yelled at him. He slammed on the brakes just in time. His driving was pretty bad for a while.  Now at age 30 he doesn't scare the snot out of me and I'll get in his car.

If anyone can relate to our feelings and fears it's this wonderful family.  Even when we're away I guarantee those who are struggling are always on our minds.  xxx Mindy



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


Posted By: dldlogan
Date Posted: Feb 10 2013 at 3:57pm
Beck,
I know you asked how to get your information on the bottom of your posts.  Since you haven't done it yet, here is what you do.
 
After you log in, go to the Member Control Panel located under the Forum Home button.  From there select the Profile tab.  On the bottom is a place to type your signature that can include your information such as diagnosis, dates, pathology...etc.
 
Just trying to help.  Smile
 
Diana


-------------
Diagnosis 6/25/12
Biopsy 7/20/12
Mastectomy 8/15/12
IDC 1.9 cm TN Gr 3 Stage I
Chemo Start 9/27/12 ACT
Done 3/7/13
BRCA Neg
Reoccurence-Lung 12/3/13-Biopsy 12/16/13 Brain MRI 2/20/14 Stage IV


Posted By: beck
Date Posted: Feb 10 2013 at 4:20pm
thanks didlogon ill try it Beck

-------------
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.


Posted By: beck
Date Posted: Feb 10 2013 at 4:22pm
yea it worked i am computer savy after all Beck... kind of strung out , but its on there   Beck

-------------
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.


Posted By: mindy555
Date Posted: Feb 18 2013 at 10:16am
Good job computer savvy Beck.  I've tried to make mine look like yours - on one line.  For some reason it won't behave.


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


Posted By: cheeks
Date Posted: Feb 18 2013 at 1:59pm
Mindy,

 I believe it will work if you don't hit enter between each thing but just use some type of symbol between information and keep on typing.  Each little thing goes toward your total character count. 

 Thanks for the email(s) really enjoyed them. Smile

Blair


-------------
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.


Posted By: mindy555
Date Posted: Feb 18 2013 at 3:05pm
Thanks Mizz Blair!  I'll change it later. SO GREAT to see ya, GF.

Here's your cyber hug, from me to you. HugHug

One day maybe that hug in person.  Ya just never know who might come knocking.  We'd prefer the master bedroom during our stay. Shocked Big smile  Egyptian cotton sheets with at least a 300 thread count will be fine.

Oh, and I like my breakfast brought to me in bed when I wake at noon.  One white rose and dark blend coffee pleazzze.

Seriously, hope you're enjoying your new home retreat.  It looks dreamy to me!


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


Posted By: memeb
Date Posted: Feb 25 2013 at 6:17pm
I can't believe it's been so long since I've posted on this site; but quick summary - I'm doing great!  I finished the dose dense chemo (AC & T) & 32 radiation txs in Nov., 2011.  Won't lie to you - it was rough, but I made it better than I had expected!  Thank God for that!  I have had trouble getting my strength back, but I am able to continue my work (accounting - work from home) and I also am keeping my great grandson who is 15 months old and brings my husband and me so much joy!!!Smile
 
I don't have any news - just wanted to let you sweet ladies know that I appreciate all your encouraging posts so much and to send lots of hugs to each one of you {{{{{}}}}}
 


-------------
DX 3/11 age 68; Stage 3, Grade 3; Lump-y w/SNB - 1/2 +; DD AC x 4 & T x 4 - 4/11; 32 Rads


Posted By: Lillie
Date Posted: Feb 25 2013 at 7:40pm

Dear memeb,

So good to hear from you again.  We appreciate your encouraging post and send lots of hugsHugHugHugyour way.   I am glad you are still working and also, it takes a while to get your strength back.  Actually, you are not far behind me in age and to tell the truth, I'm not sure if how I feel is chemo effects or age related.
 
Anyhow, post often dear.
 
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 - 11/2018-12 yrs NED


Posted By: Knitter 1
Date Posted: Apr 09 2013 at 9:47pm
I was just diagnosed with tnbc this past week.  I am 58 years old.  Tomorrow I go for my first meeting with the oncologist and hematologist.  Met with my employer today to discuss possible implications for my job during my treatment.  This is uncharted territory, certainly.  I also talked with people who said that they didn't miss a day of work or who cut down to part-time or who didn't get sick at all during their chemotherapy.  If I get sick I'm going to feel like I'm just not doing a very good job of handling it now that I've heard all of these great stories, although I'm glad that their experiences were positive ones.  I have also heard about women who were so tired that their husbands had to turn them over in bed.  I'll let you know how it goes for me when I start treatment in the next two weeks.  Meanwhile, don't feel badly...apparently, everyone experiences treatment differently.  I'm sure you'll feel stronger soon.  (You can tell me that when I write how tired I am...haha)


Posted By: Knitter 1
Date Posted: Apr 09 2013 at 9:52pm
Memeb - I'm brand new to this forum and just posted, but mistakenly posted on p. 5.  I hope you find it.  Next time, I'll post on the right page.  Take care. God bless.


Posted By: Grateful for today
Date Posted: Apr 10 2013 at 12:29am

Memeb,

Thank you for updating us.......so great to hear you are post treatment, doing great and also caring for
a 15 month old grandson.

Sending lots of caring and positive thoughts and hugs to you,
Grateful for today.............Judy

=======================================

Knitter 1,

Like your Name, Knitter 1 !
Glad you found this forum and posted. You will find many caring and knowledgeable women and
men here.

Am sure you will have many questions on your list to ask your physicians.
You might like to consider including the following with your questions if not already on your list:
      - Ask for a copy of your pathology report (if you do not already have a copy).
               Have your MD write down for you: the Stage, the size of breast lesion,
                        and if you had a lymph node biopsy, what was the report.
      - Not sure if you have had a biopsy or if you already had a lumpectomy or mastectomy.
               If you already had a lumpectomy or mastectomy, disregard the following 3 questions -
                     about which to do first.   If not, consider asking:
                                          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 surgery option?
      - What are the pros and cons of each chemo option?
      - Request a referral to a Certified Genetics Counselor for a consult about BRCA* testing.
      - Confirm that a Vit D** test will been done.

In addition to the 2 extremes of dealing with/side effects with chemotherapy you have already
heard about, there are plenty of responses in between.   There is a large range how chemo effects
a person. That's one of the initial unknowns about chemo......how it will effect oneself. Will hope
you are in the group of minimalists.......minimal side effects. In any case, once one has had the
first chemo, one then can work and plan with one's oncologist to tweak the various pre and post
chemo side effects meds as needed.



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




*On BRCA testing:
If one has TNBC and under age 60 years, a certified genetics counselor consult regarding
      BRCA testing is important.   Information on the following link:
    http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458_page1.html?KW=BRCA" rel="nofollow - http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458_page1.html?KW=BRCA
**On Vitamin D3:     
   Some/many with TNBC are low in vitamin D at time of diagnosis. If one has a Vitamin D3 test and
       the result is low, one can make a plan with one's MD for Vitamin D3 supplementation.
       See especially page 26 on following link:
    http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page26.html" rel="nofollow - http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page26.html


Posted By: Carol (Tenn)
Date Posted: Apr 11 2013 at 10:07am
Welcome Knitter,
I'd like to invite you to the Spiritual Support thread. You will enjoy the group there as well. They are faithful believers who will help you through this journey. Give them a try. And oh yeah...Welcome!!


-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: memeb
Date Posted: Apr 11 2013 at 10:52am
Hi Knitter,
So sorry that you have to join this sisterhood, but Thank God for this forum where we can talk with others who are going down this same bumpy road.  Everyone is different and I think we just have to take it one day at a time - I know that is an old saying, but it is true.  You may get lucky and not be too effected by the chemo and then again, it might be terrible - but just know that you are fighting that terrible beast and you intend to win!!!
I finished treatment (chemo and rads) in November, 2011 and now I am keeping my 16mo great-grandson!!!Smile   So you see, there is really life after cancer!  Stay strong and lean on all of us for support to help you through these next months.   God Bless


-------------
DX 3/11 age 68; Stage 3, Grade 3; Lump-y w/SNB - 1/2 +; DD AC x 4 & T x 4 - 4/11; 32 Rads


Posted By: Knitter 1
Date Posted: Apr 13 2013 at 9:22pm
Hi, Grateful for Today
Thank you for your suggestions - I'll follow up on them

Carol - will try to find the Spiritual Support thread.  Thank you!

memeb - thank you for the encouragement...

Everyone - thanks for the warm welcome! 


Posted By: wildabandon
Date Posted: May 31 2013 at 5:59pm
Hi, Memeb,

Like you, I was just recently diagnosed.  I'm 60 years old.  My cancer is:
IDC, level 3, Stage IIa, triple negative and metaplastic sarcomatoid carcinoma

(I see others have postings below their notes giving all their stats, but I have no idea how to do that.)

So far: lumpectomy, CT scan, Bone scan.  My doctor called last night and the bone scan is clean; however, I will now be having a PET scan due to a couple nodules seen on my lungs.  I'm optimistic that those are from pneumonia a few years back.  On Tuesday, June 4th, chemo will begin; six sessions three weeks apart.  After that, radiation.    

Not afraid of losing my hair at all; horribly anxious about the chemo.  Feel better after reading another thread here where someone said it's like childbirth; awful when you're in it, but soon forgotten.  That truly helped calm me down a bit.


Posted By: 123Donna
Date Posted: May 31 2013 at 7:24pm
wildabandon,

To get your information so that it appears at the bottom of your posts, like mine, go to Member Control Panel in the upper left side of the screen.  Click on Edit Profile.  Scroll down until you see Signature.  Type the information you want to appear, then scroll down to the bottom of the page and click on Update Profile to save your changes.

Donna


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



Posted By: Skclayton
Date Posted: May 31 2013 at 8:32pm
As stated, we are all different and have different effects.  I also feel alot depends on how people deal with it emotionally.  When I had my last 8 chemo treatments, I had the Heavy Duty AC and was prepared for the worse (especially when they require you to have a heart scan to make sure your heart can handle this chemo)--but expected minimal.  I did have very minimal side effects.  Some gals have negative reactions to the neulastic shot.  I had none.  I intentionally rested each afternoon ---but I am retired and can do that.  The taxol effected me a little more than the AC---- but not bad at all.  Most negative effect was on the digestive system and the lower energy levels.  But, I did most of my activities.  I ride horses and have a ranch ---so stayed fairly active.  I went on a cruise after the last Chemo --and before starting radiation.  Only side effect I have had with radiation is a good rash and a little tired here and there.  Just finished five weeks (5 times a week:Monday-Friday) of radiation and am now looking forward to great results on next CT/PET scan.  A CT/PET Scan, detailed bone scan and an organ MRI was done during my chemo treatments and they were all clear. 

Good luck and let us know how you are doing.  Note:  I am still bald and bought a hairflair hat (a hat with fake hair sticking up).  I have had a ball with that.  You cannot believe how many people think it is real.


-------------
Diag 5/2011-stage1 60yrs. Nothing in Nodes. Had Bi-lateral Mastectomy and 4 chemos.
NOV 2012: ReDiag in L-nodes-21 Nodes removed-4 positive. 8 HD chemo & 25 radiation. Clear CT/PET scan.


Posted By: Grateful for today
Date Posted: Jun 12 2013 at 9:44pm
Knitter 1,

Sending caring and positive thoughts to you during your treatment.
Hope you are a minimalist when it comes to side effects.

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

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

Wildabandon,

From your note above, sounds like you started chemo June 4.
Usually, once the first chemo is completed, then one can work with treatment team to adjust/tweak
the pre/post chemo plan for as few side effects as possible.   Sometimes it can be a "little better"
once the uncertainly of how one will respond to chemo is past.

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

=====================================

Skclayton,

It was so good to read that you are now post chemo AND radiation AND that repeat imaging during
chemo was all clear.     Joining with you in your " looking forward to great results on next CT/PET scan."

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






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