Go To Main TNBC Website


  New Posts New Posts RSS Feed - Triple negative breast cancer after 5 years
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Triple negative breast cancer after 5 years

 Post Reply Post Reply Page  12>
Author
lindarenee View Drop Down
Newbie
Newbie
Avatar

Joined: Jul 15 2009
Location: Michigan
Status: Offline
Points: 15
Post Options Post Options   Thanks (0) Thanks(0)   Quote lindarenee Quote  Post ReplyReply Direct Link To This Post Topic: Triple negative breast cancer after 5 years
    Posted: Jul 15 2009 at 7:49pm
Hi everyone:
 
I am new to the forum and i would like to know is it uncommon for triple negative breast cancer to return after 5 years of being in remission?  I haven't ask my oncologist thisquestion and she has not told whether it is uncommon or not for it to return after 5 years. i was just wondering is it uncommon for triple negative cancer to return once you reach the five year mark?  I know that it is still possible for someone to relapse of TNB after 5 years, but heard that it is rare.  Is that true at all?
Back to Top
cg--- View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 20 2007
Location: Canada
Status: Offline
Points: 1379
Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2009 at 7:56pm
I think you may find this rather interesting reading....
 
 
 
Connie
Back to Top
Kazza View Drop Down
Groupie
Groupie
Avatar

Joined: Jul 09 2009
Location: New Zealand
Status: Offline
Points: 65
Post Options Post Options   Thanks (0) Thanks(0)   Quote Kazza Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2009 at 3:45am
Hi
The article Connie has sent you to is great - it gives the plain truth but also the good news - when we get past a certain point our chances are actually better.  I met with my Onc for the first time today and I have to say if I had not found this website I would be n absolute mess.  He gave me the facts straight - in fact I had to point of the positive facts to him. My hubby who seems to have forgetton that he married me for my brillance and clearly has been ignoring everything I have said for the past week is having a bit of an emotional journey tonight.
 
There are many stories of women who have fought our disease with more then one reacurrance and a still going strong.  We will always fight it and there is always a chance - but we could also get run over by a bus tommorow.  At least we can fight.  I am only early on my journey so still full of the positive and the fight.  It is only our experiences that tell them what is rare, un common or common.  It is just a label. If we l ive every day like life is short then we  will end up more blessed than those who have never faced the truth.
 
Best of luck and good wishes
Kazza
Back to Top
SagePatientAdvocates View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4452
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2009 at 4:08am
Dear Lindarenee,

I think Connie's article is a very important one for our community..

I posted in a recent thread about a meeting we had with one of the country's
most TNBC oncologists. It is in the Talk section on the forum..."PARP inhibitors-some feedback from an oncologist"

The wonderful takeaway message for me was that a woman who has survived five years with no recurrence, new primary can be considered cured.

Are their exceptions?...I am sure there are, but I am seeing my daughter today and as she is almost five years NED I am going to try and encourage her to think more positively.

Probably there is always a lingering doubt when you have had cancer...A woman came up to me at the training session I attended and told me she is 12 years out now but said "I still worry a bit..especially when I have some strange ache or pain or some 'symptom'.." I feel that is normal and goes with the territory.

I also believe it is imperative to do clinical surveillance for as long as your physicians recommend and if there is something that is troubling from
your own observations..e.g. lump in your armpit...you should immediately check it out.

BUT, Renee, I was VERY encouraged by what the oncologist told us and what Connie's article tells us.

I wish you a very long, productive life with cancer becoming an increasingly distant memory...

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
Back to Top
dmwolf View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 22 2009
Location: Berkeley, CA
Status: Offline
Points: 3619
Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2009 at 6:15am
There's one caviat here.  Not all triple negatives are actually of basal or claudin-low class.  Those who are not are less likely to recurr overall, but if they do, it is likely to happen later (more like ER+s who recur between 5 and 10 years).  So overall odds are on our side if we make it to 5 (and even 3.5 or 4), but not all are cured at the 5 year mark.  There's a woman on INSPIRE who had this very thing happen to her - TNBC with metastatic recurrence at 5 years out.  Rare, but possible.  

So, as someone quotes in her signature, we need to "enjoy every sandwich". :)

Love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
Back to Top
CarynRose View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 04 2007
Location: Robbinsville, NJ, USA
Status: Offline
Points: 960
Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2009 at 8:05am
I was almost 5 years out when the disease metastatized.  I"m now stage 4.
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
Back to Top
vickyann View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 25 2008
Location: Texas USA
Status: Offline
Points: 127
Post Options Post Options   Thanks (0) Thanks(0)   Quote vickyann Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2009 at 6:04pm
My doctor told me most triple negative returns in the first three years. If you make it past 5 your risk is close to the same as positive breast cancer pts.. I hope it is true..i have a long way to go..but i will get there....
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09
Back to Top
Raine View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 14 2007
Location: New Zealand
Status: Offline
Points: 34
Post Options Post Options   Thanks (0) Thanks(0)   Quote Raine Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2009 at 6:36pm
Will I ended up with a new primary in opposite breast 9&1/2 yrs later am now 3 yrs out from that one.  Had lymph node involvement (both times) and lymph/vascular invasion.

So far NED to any advance outside of the breasts auxiliar.

Like many every ache is a worry.
Raine
Dx Jan 1997 Medullary,6/14 nodes Lumpectomy, Rads & 6xAC
Dx July 2006 IDC, 29/34 nodes, Mastectomy, 4xFEC and 6xTaxol, Rads
Back to Top
lindarenee View Drop Down
Newbie
Newbie
Avatar

Joined: Jul 15 2009
Location: Michigan
Status: Offline
Points: 15
Post Options Post Options   Thanks (0) Thanks(0)   Quote lindarenee Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2009 at 2:22pm
Thanks to everyone here for taking the time to answer my question.
Back to Top
Lisa L View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 06 2007
Location: United States
Status: Offline
Points: 146
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lisa L Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2009 at 3:59pm
Nearly 4 year survivor here! 
I know a women who is a 23 year survivor.  I'm not sure when triple negative was coined, but many years ago, women were not tested for all three, so that is one reason you dont hear about longer term survivors.
Dx 8/05 age 43
mast & lat flap 10/05
Triple neg
BRCA neg
IDC 4.5cm rt br
0/1 sen node
6 A/C 5 Taxol, 25 rads 11/05-6/06
Central Illinois
Currently NED
Back to Top
vickyann View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 25 2008
Location: Texas USA
Status: Offline
Points: 127
Post Options Post Options   Thanks (0) Thanks(0)   Quote vickyann Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 4:32am
We are screaming for an after care plan.... a drug... help..... medication something. Where are our trial studies.... To prevent recurrance....Where is our ...Harry Connick jr movie... Maybe we should contact the maker of herceptin and ask plead for something. I appreciate and love this site, i wish the trial studies were for prevention..recurrance.....
I found this my self on the susan komen site in dallas. Dr. Powell Brown is the researcher.  I go for month 3 july 21st.  Columbia is sponsoring this study with baylor and md anderson conducting the study if anyone is  interested
Ok now you know why i picked the bear not at the peace stage lol  yet
Love you all,
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09
Back to Top
vickyann View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 25 2008
Location: Texas USA
Status: Offline
Points: 127
Post Options Post Options   Thanks (0) Thanks(0)   Quote vickyann Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 4:35am
Part of the message did not post.. Polyphenon E
It is a green tea study for tn pts. After chemo..
Columbia Baylor and Md Anderson. I take 6 capulse a day. I go the doctor in Houston each month.
Trial study....
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09
Back to Top
SapphireSkies View Drop Down
Groupie
Groupie
Avatar

Joined: May 24 2009
Location: Madison, Wisconsin
Status: Offline
Points: 67
Post Options Post Options   Thanks (0) Thanks(0)   Quote SapphireSkies Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 4:53am
Originally posted by Lisa L Lisa L wrote:

Nearly 4 year survivor here! 
I know a women who is a 23 year survivor.  I'm not sure when triple negative was coined, but many years ago, women were not tested for all three, so that is one reason you dont hear about longer term survivors.
 
VERY good point, Lisa!


Dx'd April 23, 2009 at the age of 30 - Stage 3 TNBC.
Back to Top
rena View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 06 2007
Location: United States
Status: Offline
Points: 181
Post Options Post Options   Thanks (0) Thanks(0)   Quote rena Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 6:44am
I'm so glad that Lisa mentioned the longer-term survivors. I'm one of them. I was diagnosed in 1986 with an ER/PR-negative tumor that my oncologist called "aggressive." I had 22 positive lymph nodes. Although there was no HER test in those days, my oncologist has told me that he is 99-percent certain that I was TN. The two main factors he cites are my age at diagnosis--37--and the fact that many years later, I tested positive for BRCA2. I will never be 100-percent sure that I'm TN, but my onc and I are convinced that I am. The other thing I think about is this: HER-positive indicates a more-aggressive tumor, so if I had been ER/PR-negative and HER-positive, my prognosis would have been even worse, no?

Lisa, you are so right that the fact that HER came along so recently obscures he truth about how many long-term TN survivors there are. For me, it will be 23 years in September. I'm inspired to do some research to locate others like me. Wouldn't it be interesting? Anyone out there have ideas about how I would do that? My very, very best to you all. Rena
Diagnosed 9/86. 1 cm tumor, 22 positive lymph nodes. CMFVP chemo, weekly for one year. 7 weeks radiation. BRCA2-positive. Multiple attempts at reconstruction (three's a charm)
Back to Top
colleen View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 02 2008
Status: Offline
Points: 38
Post Options Post Options   Thanks (0) Thanks(0)   Quote colleen Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 12:24pm
I always heard with TN that after three years there is less of a chance of it coming back.  That even tho it is more aggressive the farther u get from the diax date after three years you actually have less of a chance of it coming back than the ER+ or PR+ cancers.  This is a plus for TNBC patients!
Colleen
DIAX 4/08 age 49 Stage 1C, 1.8 cm, IDC, Grade 3 Lumpect 5/08
rads 33 end 8/08
no lymph node 0/4 BRCA 1/2neg
no chemo
< stress
> nutrition
9.11 N.E.D
Back to Top
vickyann View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 25 2008
Location: Texas USA
Status: Offline
Points: 127
Post Options Post Options   Thanks (0) Thanks(0)   Quote vickyann Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 12:37pm
IS time measured by dx date always and not from last chemo date. I know we all post dx date..Do doctors measure the same way we do?
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09
Back to Top
SapphireSkies View Drop Down
Groupie
Groupie
Avatar

Joined: May 24 2009
Location: Madison, Wisconsin
Status: Offline
Points: 67
Post Options Post Options   Thanks (0) Thanks(0)   Quote SapphireSkies Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 1:31pm
Originally posted by rena rena wrote:

I'm so glad that Lisa mentioned the longer-term survivors. I'm one of them. I was diagnosed in 1986 with an ER/PR-negative tumor that my oncologist called "aggressive." I had 22 positive lymph nodes. Although there was no HER test in those days, my oncologist has told me that he is 99-percent certain that I was TN. The two main factors he cites are my age at diagnosis--37--and the fact that many years later, I tested positive for BRCA2. I will never be 100-percent sure that I'm TN, but my onc and I are convinced that I am. The other thing I think about is this: HER-positive indicates a more-aggressive tumor, so if I had been ER/PR-negative and HER-positive, my prognosis would have been even worse, no?

Lisa, you are so right that the fact that HER came along so recently obscures he truth about how many long-term TN survivors there are. For me, it will be 23 years in September. I'm inspired to do some research to locate others like me. Wouldn't it be interesting? Anyone out there have ideas about how I would do that? My very, very best to you all. Rena
 
Rena,
A big congrats to you on a 23 year survivorship! You are such an inspiration to me, as well as others here.
 
I suggest contacting Dr. Susan Love about a possibility of getting that researched. She is an amazing advocate for BC awareness, and is always doing, and routing for research.
 
 
 
On Dr. Love's Facebook page she has her email addy publicly listed listed as:  slove@earthlink.net 
 
That would be an awesome research study!
 
-Christine


Dx'd April 23, 2009 at the age of 30 - Stage 3 TNBC.
Back to Top
trip2 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jun 03 2007
Location: Under Palm Tree
Status: Offline
Points: 8549
Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 2:17pm
Vickyann,
 
Some women count differently.  My Oncologist went from time of diagnosis, the surgery to remove all bad things.
Stage 2 2003
Stage 1 2007
BRCA 1+
Back to Top
rena View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 06 2007
Location: United States
Status: Offline
Points: 181
Post Options Post Options   Thanks (0) Thanks(0)   Quote rena Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 3:19pm
Christine, thank you for the great idea! I will contact Dr. Love--nothing to lose. And I agree--you look beautiful in your photo! Take care. Rena
Diagnosed 9/86. 1 cm tumor, 22 positive lymph nodes. CMFVP chemo, weekly for one year. 7 weeks radiation. BRCA2-positive. Multiple attempts at reconstruction (three's a charm)
Back to Top
cubfan View Drop Down
Newbie
Newbie


Joined: Jul 18 2009
Status: Offline
Points: 1
Post Options Post Options   Thanks (0) Thanks(0)   Quote cubfan Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 3:24pm
 Hello All,
I have been reading all of the postings and feeling somewhat better.  I was newly dx in March 09 at 43. <1cm, no node involment.  I have IDC, and DCIS. I had a lumpectomy and have done 4 tx of ACT.  I have my follow up appt. on Monday to determine if I should get Taxol. If I dont I will follow up with radiation.  Just very scared and glad to know there are women out there fighting daily.  If there are any new medications please comment.  I hope to get to a point where anxiety and fear do not make up my days.  Praying for the cure in Iowa
Back to Top
 Post Reply Post Reply Page  12>
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.