Go To Main TNBC Website


  New Posts New Posts RSS Feed - Second cancer - not triple neg
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Second cancer - not triple neg

 Post Reply Post Reply
Author
NewDay View Drop Down
Newbie
Newbie
Avatar

Joined: May 08 2011
Location: Warren, Ohio
Status: Offline
Points: 7
Post Options Post Options   Thanks (0) Thanks(0)   Quote NewDay Quote  Post ReplyReply Direct Link To This Post Topic: Second cancer - not triple neg
    Posted: May 08 2011 at 3:45am
Hello.  I may be new here but I am not new to triple negative.
I have just been diagnosed with a second cancer, not triple negative -
(ER+)  Now because of an oncoDX test my onc wants me to decide to take more chemo.
I am not fully in agreement.  There are things in the test that I don't agree with.
1. I am less estogen pos. than the test results are based on. (>5%)
2.) The women in the clinical experience group took tamoxifan. I am postmenopausal 
     and will have to take an aromatase inhibitor instead. 
3.) The report admits that "it is unknown whether the findings apply to patients outside these criteria".
 
THE PROBLEM: I have fear that this is the first step to going south with having had triple neg before.
 If I take the chemo and weaken my immune system, will that give triple neg a chance to come back?
I would like to know others experiences with their triple negative, especially how and when it came back, if they has other cancers, more chemo, how they have coped and what treatments and tests they had. 
I know that that when breast cancer returns in the oppsite breast it is treated as a whole new cancer,
but I am afraid it is just my luck that everything is just starting to goand fast.   
 
Thankx 4 the responses.
1/9/2009 TNBC
DCIS 2.7cm Stage 2A
NO MO
R MAST C/T
3/10/2011 ER+
DCIS >1CM Stage 1A
NO MO
L MAST
Back to Top
Debris View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jun 07 2010
Location: Forsyth,Georgia
Status: Offline
Points: 756
Post Options Post Options   Thanks (0) Thanks(0)   Quote Debris Quote  Post ReplyReply Direct Link To This Post Posted: May 08 2011 at 12:08pm
Hello there!  I'm sorry I cannot give you any meaningful answers because I'm not knowledgable enough in that area.  I'm sure, though, that those on this forum who can give you suggestions will soon be along to do so.  I just wanted to say "Hi!", and send you warm greetings.
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs
Back to Top
Autumn10182001 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 18 2009
Location: Highland, NY
Status: Offline
Points: 557
Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn10182001 Quote  Post ReplyReply Direct Link To This Post Posted: May 08 2011 at 10:24pm
New Day... if your new cancer is less than 5% ER+,  then I believe it is usually considered triple negative.. I think anything under 30% ER+ is considred  TN.  I was 5% ER+ this time (2009), but am told it is TNBC..  I was ER+ and PR+ last time (1999). I am on Femara because the onc thinks it might help a little since iam er+ 5%... not sure if this helps... Autumn
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
Back to Top
NewDay View Drop Down
Newbie
Newbie
Avatar

Joined: May 08 2011
Location: Warren, Ohio
Status: Offline
Points: 7
Post Options Post Options   Thanks (0) Thanks(0)   Quote NewDay Quote  Post ReplyReply Direct Link To This Post Posted: May 09 2011 at 12:07am
It sure does help!!  That is positively interesting!    My onc will have some questions to answer!!  I asked the nurse at the office for her to call me back but she didn't return my call.  I was suspicious about the low ER because the onco DX has me as triple neg.   That was one thing I needed to ask her about.
Am about to call another onc for a 2nd opinion. 
Thank you so much for responding to my thread Autumn!
Hello to you too Debris.   Glad to meet you both.
1/9/2009 TNBC
DCIS 2.7cm Stage 2A
NO MO
R MAST C/T
3/10/2011 ER+
DCIS >1CM Stage 1A
NO MO
L MAST
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12793
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 09 2011 at 7:30am
New Day,

So glad you're getting a second opinion with another onc.  It's always a good idea and will help answer your questions about your treatment options.  Keep us posted on what you find out.

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

Back to Top
Autumn10182001 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 18 2009
Location: Highland, NY
Status: Offline
Points: 557
Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn10182001 Quote  Post ReplyReply Direct Link To This Post Posted: May 09 2011 at 8:47am
New Day,  please keep us posted. For obvious reasons, I am etrememly interested in your 2nd opinion... being at 5% myself....  if you would like, send me your email address and we can keep in touch that way... or if you are on FB, I doing alot of chatting on there.   my email is autumn10182001@yahoo.com...
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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: May 09 2011 at 5:11pm
NewDay, have you been tested for BRCA mutations?   Two primaries in two years does suggest something might be up genetically.    I'm so sorry you are dealing with this. 

How big is the invasive component?

d
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
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: May 09 2011 at 5:16pm
Also, what % of the BC cells were progesterone positive?

d
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
outnumbered View Drop Down
Senior Member
Senior Member
Avatar

Joined: Feb 02 2009
Location: New Jersey
Status: Offline
Points: 525
Post Options Post Options   Thanks (0) Thanks(0)   Quote outnumbered Quote  Post ReplyReply Direct Link To This Post Posted: May 09 2011 at 5:46pm
Hi NewDay,
I went to a talk on Triple Negative last summer and an oncologist spoke and a pathologist spoke.  If I remember correctly, and I think I do because it stood out to me at the time, he said something confirming what you are hearing.  He said that more recently pathologists are calling small amounts of ER and PR positive where previously they were considered to be negative.  Its not a change in the pathology, its a change in the interpretation. This in turn can change the treatment.  I would get another consultation.  Also, if you ahavent done so already, I woud see a genetic counselor.
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008
Back to Top
NewDay View Drop Down
Newbie
Newbie
Avatar

Joined: May 08 2011
Location: Warren, Ohio
Status: Offline
Points: 7
Post Options Post Options   Thanks (0) Thanks(0)   Quote NewDay Quote  Post ReplyReply Direct Link To This Post Posted: May 09 2011 at 9:06pm

I don't know a lot about how to read my pathology report, and I don't pretend to know what it means, but I will try to answer all your questions. 

My sentinal node biopsy was 0/3.  DCIS present,  Over all Grade 2,  Scores of 6 or 7. 
Estrogen receptor: Immunoreactive tumor cells present (>1%) ; Quantification: 80%.  
(Oncotype test puts me ER+ at 4.9)
Progesterone receptor:No immunoreactive cells present.
HER2/neu receptor: Negative (Score 1+).
Primary tumor >5mm. but < 10mm. in greatest dimention.
It also mentions "Glandular differentiation" - score 3:  <10% of tumor area forming glandular/tubular structures. (???)     "Nuclear pleomorphism" - score 2:  Cells larger than normal with open vesicular nuclei, visable nuclei and moderate variability in both size and shape...(???)
If anyone knows what some of this means, I would appreciate a pathology lesson.....
 
I wanted tested for BRCA the first time I had TBNC, but the Doc said she didn't believe I would have it because of my age when diagnosed. (51)  I think BRCA is found in younger women with a dx of tnbc ... ? ..   I have it now on my list of questions for the Dr. for my second opinion.  I think I will also go line by line and make the doc explain it to me.
 
So far my Dr will not be in the office till tomorrow to set up a second consult. She has to give me a referral.
 
Something else - I realize now there is no mention of hormone receptor results on my 1st path report. 
I have no way to compare the two.  I was just told I was neg for all......
 
1/9/2009 TNBC
DCIS 2.7cm Stage 2A
NO MO
R MAST C/T
3/10/2011 ER+
DCIS >1CM Stage 1A
NO MO
L MAST
Back to Top
NewDay View Drop Down
Newbie
Newbie
Avatar

Joined: May 08 2011
Location: Warren, Ohio
Status: Offline
Points: 7
Post Options Post Options   Thanks (0) Thanks(0)   Quote NewDay Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2011 at 2:06pm
Dear dmwolf;
Thankx for the support.
My oncotype dx score for progesterone was 4.6,  (with <5.5 considered negative.)
Streight from the report: "the maximum dimention of invasive carcinoma within the recent mammotome biopsy apppears to be between 0.6 - 0.8 cm."
I don't know how big that is , but the radiolgist who gave me the injection for the sentinal node biopsy told me "they were lucky to find it - that radiologist did you a big favor."
 
Thank you everyone!!!   Will keep you posted....
1/9/2009 TNBC
DCIS 2.7cm Stage 2A
NO MO
R MAST C/T
3/10/2011 ER+
DCIS >1CM Stage 1A
NO MO
L MAST
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: May 10 2011 at 11:49pm
NewDay, what was your oncotype DX risk score?  Did you fall in the high risk category, or intermediate?

I don't know how much faith I'd put in the oncotype DX score for estrogen or progesterone, as those are mRNA transcript scores rather than protein as is captured by IHC staining.   Also, the transcript variant they use for ER might not be the best one to use for assessing risk.

Am I right in reading your report that 80% of the cells stained positive for estrogen?  That is a good thing, suggesting responsiveness to Tamoxifen and low risk of recurrence.  The negative progesterone staining, however, is associated with more aggressive cancers.   But the tumor is very small. 

How about scoring the tumor using Mammaprint?  (The company is Agendia).  That way, you'll have more information on your risk from independent sources: Oncotype DX, Mammaprint, plus of course %ER+, tumor size, and grade.     This should help you decide whether to have chemo, and if so what kind.

Best,
d


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
NewDay View Drop Down
Newbie
Newbie
Avatar

Joined: May 08 2011
Location: Warren, Ohio
Status: Offline
Points: 7
Post Options Post Options   Thanks (0) Thanks(0)   Quote NewDay Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2011 at 11:35am
DX score = 46   I know, it is high risk. 
I am not sure how many were pos for ER - I don't know what some of the path
report means.    I will ask the onc about the mamoprint.  She was going to give me another report -AduvantOnline  - or something like that. But she said the program wasn't working....
I am still waiting for the referral Dr. to give me an appointment.   - -  time is running out!
1/9/2009 TNBC
DCIS 2.7cm Stage 2A
NO MO
R MAST C/T
3/10/2011 ER+
DCIS >1CM Stage 1A
NO MO
L MAST
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: May 11 2011 at 2:29pm
Hmm...that predicts a 30% risk of recurrence. 

It sounds like the line: "Estrogen receptor: Immunoreactive tumor cells present (>1%) ; Quantification: 80%. "  means that 80% of your tumor cells stain positive for ER.  That is very high, as the threshold for ER positivity is 30% or even much lower, depending on whom you ask.

Adjuvant online will give you a much lower risk of recurrence.  Actually, maybe I'll check it out for you.

How old are you? (it's one of the questions they ask).

If I put in that you are 50 years old with average comorbidities, Adjuvant online gives you the following prediction (at 10 years):

no therapy:  18% recur.

hormonal therapy only: 7% absolute gain in survival.

chemo only: 8% absolute gain in survival

combined: 12% gain in survival

so....according to Adjuvant, you gain 4% absolute survival from chemo, which cuts the rate of recurrence from untreated by about 22%. 

BUT adjuvant online doesn't allow input of progesterone receptor status, so this is an underestimate of your risk of recurrence and an underestimate of the anticipated benefit of chemotherapy.

It sounds to me like you should do it, as icky as it is to anticipate going through chemo all over again.

HTH,
d
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
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: May 11 2011 at 2:30pm
email me at dmwolf@lbl.gov and I'll send you the report.
best,
d
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
rigatonismom View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 22 2010
Location: Albuquerque, NM
Status: Offline
Points: 264
Post Options Post Options   Thanks (0) Thanks(0)   Quote rigatonismom Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2011 at 7:30pm
Hi Newday,
I'm <5% progestrone positive and the onc says she will put me on Arimidex(sp?).  I'm 64 so am postmenapausal.  I don't really understand but I know that I couldn't get on a PARP trial because of the 5%.
 
Nita
DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
Back to Top
rigatonismom View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 22 2010
Location: Albuquerque, NM
Status: Offline
Points: 264
Post Options Post Options   Thanks (0) Thanks(0)   Quote rigatonismom Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2011 at 7:35pm
dmwof,
I did a search on Adjuvant and found the website.  Where do you put in the stats to get your results?
 
Nita
DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
Back to Top
NewDay View Drop Down
Newbie
Newbie
Avatar

Joined: May 08 2011
Location: Warren, Ohio
Status: Offline
Points: 7
Post Options Post Options   Thanks (0) Thanks(0)   Quote NewDay Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2011 at 9:17am

Well, my second opinion appointment isn't till the 25!

Before too long it will be too late to make an informed decision.
A breast cancer navigator is suppose to call me back. 
1/9/2009 TNBC
DCIS 2.7cm Stage 2A
NO MO
R MAST C/T
3/10/2011 ER+
DCIS >1CM Stage 1A
NO MO
L MAST
Back to Top
NewDay View Drop Down
Newbie
Newbie
Avatar

Joined: May 08 2011
Location: Warren, Ohio
Status: Offline
Points: 7
Post Options Post Options   Thanks (0) Thanks(0)   Quote NewDay Quote  Post ReplyReply Direct Link To This Post Posted: May 26 2011 at 1:12pm
The navigator said that even if I was > 5% I am still ER+ and will be treated as such. 
She works with the Dr. I had a second opinion with - He suggests chemo also. -
1/9/2009 TNBC
DCIS 2.7cm Stage 2A
NO MO
R MAST C/T
3/10/2011 ER+
DCIS >1CM Stage 1A
NO MO
L MAST
Back to Top
AKA04 View Drop Down
Groupie
Groupie
Avatar

Joined: Mar 23 2010
Location: DFW
Status: Offline
Points: 58
Post Options Post Options   Thanks (0) Thanks(0)   Quote AKA04 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 22 2011 at 5:09pm
Hi NewDay,

I had triple negative in Mar 2008, went through chemo and radiation.  Two years later, March 2010 my cancer came back in the second breast and it was not triple negative.  I had the BRCA test and I am BRCA 2 positive and my ONCODXT tested to be high.  Therefore, I had a double max, and 6 mos of chemo all over again and I am having a oophorectomy next month.  I am doing all I possibly can do to prevent cancer from returning and leaving the rest to God!  Today, after two 3 months visits I am still cancer free again.  Find a great Oncologist and communicate with him or her until you feel good about the decision you will make about your life!  Good luck and I am sure you will come to a decision that works for you!

God Bless!
Dn 4/08, tnbc/idc, gr III, stg I, 1.5 cm, 3 nd-, lump 5/08, chem 4xCT,Radx36

New prim 3/10, ER/PR+ HER2-/idc, gr III, 0.8cm, lump 4/10, BRCA2+, Bi Mast 05/10       

Back to Top
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down

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