New Posts New Posts RSS Feed - Newly Diagnosed Support
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Newly Diagnosed Support

 Post Reply Post Reply Page  <1 1011121314 16>
Author
 Rating: Topic Rating: 1 Votes, Average 5.00  Topic Search Topic Search  Topic Options Topic Options
arabella View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 28 2013
Location: Alabama
Status: Offline
Points: 288
Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2013 at 1:39am
Thanks, Judy, for your good advice and food for thought.  I really appreciate it!  More than anything, I'm thinking my gut says do the chemo because of UAB expert's experience, etc., and for the reason Lillie spoke of above about feeling I've done everything to help myself.   They were both speaking of 10 yr. recurrence.  I'll see how I feel tomorrow.  
Again, thanks, for taking the time to try and think this thing thru for me,
Kaye
Back to Top
Charlene View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 14 2010
Location: Atlanta, GA
Status: Offline
Points: 613
Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2013 at 7:25am
Hi, Kaye,
All I can speak from is my own experience.  My largest focus was 1.1 cm and my oncologist recommended chemo because it was larger than 1 cm and ER-.  As I moved forward after treatment, I did find peace in knowing that I had done everything I could and would, therefore, not blame myself if I had a recurrence.  Having said that, though, I have learned from follow-up visits and further discussion, that the chemo only improved my chances by about 7%.  Still, at the time, I was willing to do anything that would improve my chances for long term survival.  I wish you well as you make your decision, as there are certainly reasons on both sides of the equation.
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
Back to Top
arabella View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 28 2013
Location: Alabama
Status: Offline
Points: 288
Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2013 at 8:21am
Thank you so much, Charlene.  You sound like you are very much in my position.   I am 63....I see where you were 59.  To me that is not a big difference, but according to all their charts and all, there's a break where it begins at 60 and my onc showed me this.  Everything is so close in my case.  And yesterday was 6 weeks exactly and nobody in this whole mess has said anything to me about this window of starting chemo.  I am going to call UAB this morning and see what happens.  I cannot shake the feeling completely that if I didn't have chemo and it came back in a year and a half that I would feel foolish........  Yet, if the UAB expert had told me I could move on without it, I would be doing that and not looking back....at least I think I would feel that way.  This cancer is something else.

Thanks so much, Charlene, for your input.  It does matter to me very much in my decision making.  I almost feel sick this morning over all this.

Also, the only doctor that has really showed any concern at all in the BRCA gene mutation testing for me is my surgeon.  That doesn't seem quite right to me either.

Kaye
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13509
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2013 at 9:04am
Kaye,

I know this is a tough decision for you and ultimately you'll have to go with your gut decision.  From what I've seen, most oncs will suggest chemo if the tumor is bigger than .5 cm.  Your's was 1.1 cm and TNBC.  There's no guarantee with chemo either, but hopefully it helps our odds.  The biggest fear we have after diagnosis, surgery and treatment is the fear of recurrence.  Sometimes knowing we threw everything at it give us peace of mind.  I'm kind of rambling and probably not helping you very much.  I think talking the the UAB person is a good idea and giving yourself time over the weekend to make your decision.

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
Debby Doo View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 22 2013
Status: Offline
Points: 3
Post Options Post Options   Thanks (0) Thanks(0)   Quote Debby Doo Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2013 at 9:31am
Hi ~ To make a long story short, had a double mascetomy, went thru chemo and finished radiation last month. My question is should I take Tamoxifen or not? I don't think it would benefit me.
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13509
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2013 at 9:33am
DebbyDoo,

Did your tumor have some percentage positive for estrogen?  
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
Debby Doo View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 22 2013
Status: Offline
Points: 3
Post Options Post Options   Thanks (0) Thanks(0)   Quote Debby Doo Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2013 at 9:40am
No, I'm on the county program thank god b/c they have so far paid all my bills. My sister is worried so got tested and the 1 st one is negative. It's been a rough year.

Back to Top
Debby Doo View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 22 2013
Status: Offline
Points: 3
Post Options Post Options   Thanks (0) Thanks(0)   Quote Debby Doo Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2013 at 9:49am
Just found this website, seems like it's good to connect, it's late my time, sorry, need to get some much needed sleep.. I'll try to log in in later my time, PST. Thanks!
Back to Top
Charlene View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 14 2010
Location: Atlanta, GA
Status: Offline
Points: 613
Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2013 at 10:00am
Regarding BRCA testing:  I had it at my own insistence because I have a daughter and two nieces and I wanted them to have that information.  My oncologist said it was much less likely for me to be positive for BRCA since my cancer developed post menopausal.  Again, not impossible, but very unlikely.  Kaye, I also think you are correct as far as the age factor is concerned--the older you are at diagnosis, the less chance for recurrence.  Again, nothing close to a guarantee, though!  And, that's the whole dilemna with this, I think--no guarantees with anything, so we all have to choose the path that we can best live with.
 
DebbieDoo:  I don't think tamoxifen is prescribed unless your pathology report showed a significant percentage positive for estrogen.  I also think age might be a factor. Congratulations on making it through treatment!
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
Back to Top
arabella View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 28 2013
Location: Alabama
Status: Offline
Points: 288
Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2013 at 10:57am
Thanks again Charlene and Donna.  Your comments are helping me....they really are.  It reassures me that most oncs suggest chemo for anything larger than .05, Donna....I didn't know that.  And, I do know that my age makes a difference....that's what my local onc keeps referring to as well.  As far as BRCA testing goes, Charlene....I want it for the same reason as you did....for my daughter and my sister and nieces benefit and I do have a mother and aunt who had breast cancer,  though at age 70 in both cases and the cancer took my aunt's life.  

Please, if y'all can think of anything else....anything.....please don't hesitate to post it.  Any little thing helps me at this point.  I've got a call in now to UAB and waiting for a call back.  My expert BRCA doctor is not there today and her #1 nurse is doing clinicals today, but somebody "should" get back in touch with me.  Hopefully that will happen.  

Kaye
                                                            *****************

DebbieDoo:  I offer my congrats to you as well in getting thru treatment!  Has a doctor suggested that you take tomoxifen.....or are you just wondering?  I think Donna and Charlene gave you great advice.         Kaye  
Back to Top
Lee21 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Dec 22 2011
Location: Michigan
Status: Offline
Points: 752
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2013 at 12:05pm
Hi Kaye,

Glad you had your 2nd opinion and to hear they weren't too perplexed by the grade 1 histology. My impression is that pathology reading still has a subjective component and depends on the experience of the attending pathologist.  Consequently there will be some variation in the readouts by different pathologists. If two pathologists agree then likely it is the way it is.

Regarding chemo vs no chemo, there is a tool called Adjuvant Online! that my oncologist used for assessing the benefit of chemo. What she did not tell me was that the tool hasn't been updated since 2006, it doesn't distinguish between Her2+ or TN disease, and in the treatment choices, Herceptin (which is very important for Her2+ patients) is not listed.  So I tend to take the numbers from Adjuvant Online with a grain of salt.

What kind of chemo did the UAB onc recommend? If the regimen doesn't contain an anthracycline (adriamycin or epirubicin) then you won't get the long term side effects of leukemia and cardiac diseases (these risks are under 1%).

I am also not aware of a strict window for starting adjuvant chemo.  However it makes sense.  There is a belief in the literature that at the time of surgery micromets are disseminated and adjuvant chemo is supposed to go after those wandering tumor cells.

The NCCN recommendation for BRCA testing is for anyone under the age of 60.  If you are over 60, chances are it will not be covered by insurance.  I think out of pocket costs will be on the order of $3000+ (the main BRCA test and the BART test).

Lee

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

Joined: Jan 28 2013
Location: Alabama
Status: Offline
Points: 288
Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2013 at 3:35pm
Hi Lee!  Thanks for all the info.....very valuable info for me.

I also would like to update on my situation.  I have now received a call from UAB and my Expert Dr. did call promptly and early Wed. morning to the local onc and left  a long voice mail.  I knew I liked the UAB doctor soooo much and now I like her even more for calling me back so promptly today  and during her busy schedule and all.  I wish I lived right there and it would make it so much easier to be under her care.  I have faith in her, like her and respect her.

I now have been accepted as a patient by an onc in Tuscaloosa (a little over an hour's drive away)....he's well respected and is familiar with TNBC and also feels I need chemo.  I am awaiting a call from his office with an appointment time.  His office is one of those groups that are affiliated with MDA....

I told my friend today that I cannot believe that I am doing the happy dance because I will start chemo soon.  Amazing how life is, isn't it?  I feel like a huge burden has been lifted and a decision has been made.  True enough, I've not met this doctor yet, but have heard all good things about him.  

Oh, and Lee....the test you're referring to is the test my local onc said he ran on me.  Gave me his printout of it.  He said to just overlook the part about hormone therapy as it didn't apply to me so he didn't put those figures in.  Isn't that something?  Thanks again for all your good insight and info.

Just got a phone call.....my appointment is this Monday at 8 a.m.   YEAH!!!    Doing the happy dance, ladies!

Thanks to everybody for all the super help and support....y'all are the best friends ever!

Kaye  HugHeartHug

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

Joined: Nov 30 2012
Location: ILLINOIS
Status: Offline
Points: 276
Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Feb 22 2013 at 5:50pm
arabella you are the same age as me im 15 months out from the tn and 5 years from the er postive, i did chemo both times   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.
Back to Top
arabella View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 28 2013
Location: Alabama
Status: Offline
Points: 288
Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2013 at 8:47am
Lee, the UAB doctor said TC for 4 rounds. 
 
I didn't realize that you needed to be under 60 for insurance to pay for BRCA.  With my mother and my aunt (my aunt's only child, a son, died with prostate cancer) having breast cancer, and now with me having TNBC, I just thought it would be easy to get insurance to pay for this test.  I do understand about everybody being younger and all when diagnosed with breast cancer.  I guess I will have a decision to make as I do have a daughter who'll be 25 next month and several nieces.  

beck, it's great to know that you have done so well and that you are my age and all.  Your going through two different types of breast cancer must be very difficult, but your attitude and way of dealing is truly uplifting.  I loved the story on another thread that you shared about your little coon.... :)))
Back to Top
Lillie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3616
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2013 at 10:13am
Dear Kaye,
 
Getting a plan in place and progressing forward is really a 'mind liberating' thing.  So sorry it has to be about tnbc, but we are here for you ALL THE WAY!
 
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
Back to Top
dkmoore2 View Drop Down
Newbie
Newbie


Joined: Feb 23 2013
Location: Cleveland, OH
Status: Offline
Points: 10
Post Options Post Options   Thanks (0) Thanks(0)   Quote dkmoore2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2013 at 11:12am
Hi my name is Debbie, just turned 53, just diagnosed with triple negative breast cancer.  The tumor is 1.5 cm.  My husband does not believe in doctors much.  Going in for surgery this Friday.  I am freaked out.  Why me?  Changed my diet and eating vegetarian now.  I dont want to do chemo.  Has anyone out there just skipped it?
Back to Top
dkmoore2 View Drop Down
Newbie
Newbie


Joined: Feb 23 2013
Location: Cleveland, OH
Status: Offline
Points: 10
Post Options Post Options   Thanks (0) Thanks(0)   Quote dkmoore2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2013 at 11:14am
I have many questions.  All of you seem to say the cancer comes back anyway?  I couldnt bear a reccurence.  They havent staged it yet, until surgery as you all already know.  Glad I found this site and will check in often.  Scared...
Back to Top
Lillie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3616
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2013 at 1:08pm
Hello Debbie,
 
I'm glad you found this site, but sorry you have a need to.   What type of surgery are you having?  "mastectomy or lumpectomy".   A very few have skipped chemo.  Usually, it is because of very small tumor .5 cm or less.   After your surgery and staging you will be in a better position to make the choice about chemo.  Also, if lymph nodes are involved makes a difference in what you should do. 
 
I am sorry your husband is anti doctor.  It sounds as though you will not have support from him.  Do you have children, friends or close family to support you? 
 
Please know that you can post here anytime, with any questions, any emotions, any concerns.  WE UNDERSTAND your fear and uncertainty about what to do.  We are here to support you.
 
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
Back to Top
AllisonW35 View Drop Down
Newbie
Newbie
Avatar

Joined: Jan 04 2013
Location: Murray, KY
Status: Offline
Points: 18
Post Options Post Options   Thanks (0) Thanks(0)   Quote AllisonW35 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2013 at 1:45pm
According to my doc, there is an 85% chance it won't come back once I finish chemo in my case. Mine was 2cm (or 1.8, depending on which pathology report you read; go figure), stage 1 so not in the lymph nodes. It was grade 3, which is highly aggressive, so I am relieved it hadn't spread but just hope the chemo gets any stray cells. I don't know if I could handle a recurrence, either. Praying you get a good report from the biopsy! By the way, chemo isn't fun but it is bearable, at least that has been my experience so far.
Back to Top
beck View Drop Down
Senior Member
Senior Member
Avatar

Joined: Nov 30 2012
Location: ILLINOIS
Status: Offline
Points: 276
Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2013 at 3:34pm
dkmore, it dosent reacuure in all cases many many never have a reacurrance most of them arnt on here, you have to remember not all tnbc women are posting on here many are just living their lives, im 15 months out on my tn of course i worry, but i saw Robin Roberts on 20/20 last night , when she was asked about worrying , she said if she spent her life worring, then the cancer won, she said no way did she go through what she went through, to just end up with alife of worries, man she is a strong women, as far as chemo, mine was 1.5 cm and i did chemo, had erpostive in 2007 , and did chemo,you will find most of us have, i hope you get lots of help with what you decide , 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.
Back to Top
 Post Reply Post Reply Page  <1 1011121314 16>
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 12.01
Copyright ©2001-2018 Web Wiz Ltd.