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Stressmagnet View Drop Down
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Joined: Mar 21 2010
Location: NSW Aist
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    Posted: Mar 21 2010 at 8:06pm
Hiya, I have been battling breast cancer for about a year and a half now. 1st primary was inflammatory breast cancer which was treated with taxol and herception to shrink it down from a massive 8 cm mass to a 1cm mass. Had a double mastectomy (due to recurrence stats) and the cancer was gone -- nice clear margins. In the process of the mastectomy, they found another primary in my lymph nodes which was triple negative.
I've just returned from the geneticist who told me I do not have the mutations on BRCA 1 and 2. I am therefore ineligible (as far as I know) for any adjuvant treatment.
This scares the crap out of me, given the high recurrence rate of triple neg, and it's aggressiveness.
Is there any hope? I am 48 with two daughters who are only 10 and 7.
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123Donna View Drop Down
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Joined: Aug 24 2009
Location: St. Louis, MO
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Points: 13510 		Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2010 at 8:26pm
Hello and welcome to our family.  

It is true that there is no other adjuvant therapy for triple negative except chemo.  How many lymph nodes did they remove?  Are your docs considering additional chemo since they found a new primary in the lymph nodes?

Here's a link to a pamphlet explaining more about TNBC:

http://www.lbbc.org/data/media/LBBCunderstandtriplenegative.pdf
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
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Carol (Tenn) View Drop Down
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Joined: Aug 06 2009
Location: Paris,Tennessee
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Points: 2707 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2010 at 7:29am
Hello and welcome..Hug
 
The brochure that Donna recommended is wonderful in answering all your questions and concerns. Please tell us all about your latest dx. We can better understand your situation. Try not to be scared, we are all here to support you.
We also have a spiritual support thread and would love for you to visit if that is something you might be interested in.
Love and Prayers, Heart
 
Good morning Donna..
 
Just wanted to say hello and tell you that you are the greatest....I love reading your posts. You always seem to say the right thing. At least your not like me..."open mouth, insert foot"...have a great day!
Love and prayers,
Carol


Edited by Carol (Tenn) - Mar 22 2010 at 7:30am
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
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123Donna View Drop Down
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Points: 13510 		Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2010 at 7:49am
Carol,

We love you!  You speak from your heartHeart
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
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trip2 View Drop Down
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Points: 8549 		Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2010 at 10:28am
Hello Stressmagnet and welcome!
 
Have you spoken with your Oncologist yet?  There is chemotherapy they can give you to treat this new diagnosis.  Chemotherapy/radiation are all that works for TNBC but we respond very well to chemotherapy.
 
Unfortunately after treatment there is nothing more we can do but remain vigilant and see our Onc on a regular basis.   Some Oncs will scan on occasion while others do not unless symptoms were to suggest one is in order.
 
Please check out the Resource link above and also the TNBC News/Resource section, both of which will give you alot of info in regard to TNBC.
 
Write and ask any questions, we'll be happy to help and support.  This is an amazing group of members who are here for you.  So very sorry you have to go thru this again.  This time you'll stamp it out!Heart
Stage 2 2003
Stage 1 2007
BRCA 1+
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kirby View Drop Down
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stressmagnet,
 
Some people are so clever with usernames ! I have been trying to come up with something original for my email and am still at a loss.
 
The biggest concern I would think, would be the inflammatory and it sounds like you have that controlled. TN certainly sounds scary and it's return rate leaves us quaking however, remember these are statistics and basically a small percentage. Scared just sent a wonderful  post on breaking those statistics down that really put it in good perspective. I would look it up for you but am fairly inept at that.
 
My daughters were 9 & 13 when I was dx. just over 9 years ago. There is hope. Never give that up.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Stressmagnet View Drop Down
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Joined: Mar 21 2010
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Points: 2 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Stressmagnet Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2010 at 3:13pm
Thank you all from the bottom of my heart. My onc has me on a 52 week treatment of Abraxane, Herceptin (cos he reckons it can't hurt) and Zometa to strengthen my bones. My last scan showed no lesions so I suppose I am good shape.
Yuk. Cancer. I hate the way it takes over every waking minute of your life. It affects you, your kids, your hub and your friends.
Glad I found this place.
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dmwolf View Drop Down
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Joined: Jan 22 2009
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Points: 3619 		Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2010 at 10:18pm
Hi, Stressmagnet.  You are not the only stress magnet.  I am so stress-magnetic that stress leaps out of its chair to bludgeon me when I walk in a room.    Though at the moment I am a little lower on the stress scale after a weekend away skiing (badly). 

52 weeks...wow!!  That is a really long time for chemo (the taxol part) given you are not stage IV.  Congrats on having a clean scan.  That's the best any of us can do.   As for BRCA status and adjuvant chemo - I don't see why that should matter.  Most TNs don't have BRCA mutations.   Are they sure the TN tumor is a new primary?  Cancer can mutate away from its receptors.  Also, there are false negatives and false positives in the Her2 test.  It might be a good idea to retest to be sure that there's really a difference in receptor status.    As for adjuvant: well, you've already been on a year of chemo.  Then again, you haven't had adriamycin (not that I would wish it on you or anyone else, but it is part of standard of care for most aggressive breast cancers).   I dunno.  Second opinion?    Plus keep fingers crossed and build up your strength?    My girls are 9 and 12, so I know of whence you speak.

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.
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mom&grandma View Drop Down
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Points: 201 		Post Options Post Options   Thanks (0) Thanks(0)   Quote mom&grandma Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2010 at 12:08am
Hi Stressmagnet,
 
I am so sorry you have to deal with all this.  Many of the women on this site have young children including my daughter so they all know how you feel. You have already received excellent advice from Donna, Carol, Pam, Kirby and Denise.  They are the real veterans of this site and certainly very knowledgeable.  We have a few more that I am sure will pop in very soon.
 
Be kind to yourself!
Bonnie, mom of Heather, age 32, Dx on 9/1/09 TN IDC Stage 1, 1.4 c, lumpectomy, 10/8/09, DD AC & T, 3/9/10 bilateral mastectomy and immediate reconstruction, BRCA 1/2-
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