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Topic: Triple negative beyond 2 years- What was your treatment?

Forum: Triple Negative — Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Oct 25, 2007 09:44AM, edited Oct 25, 2007 09:44AM by Sadie-Rose

Sadie-Rose wrote:

Hi Everyone,

I am just curious--For those of you who are triple negative and are beyond the 2-3 year window...  Did you choose lumpectomy or mastectomy?

Sadie

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Oct 25, 2007 10:05AM ravdeb wrote:

I am just over 2 years out and I had a lumpectomy.

I had a 2 cm tumor, node neg, grade 3.

I did AC followed by Taxol and 33 rads.

IDC, 2cm, triple negative, grade 3, node neg

Dx 9/5/2005, IDC, 2cm, Stage Ia, Grade 3, 0/1 nodes, ER-/PR-, HER2-
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Oct 25, 2007 10:06AM Nicole_McC wrote:

I am triple negative but not within your time frame.  I am only 4 months out from my last chemo treatment and bilateral mastectomy.  I am still a leery about the whole triple threat.  Everything that I am reading about being triple negative is not a good prognosis. 

Dx 1/17/2007, 3cm, Stage IIa, Grade 3, 0/2 nodes, ER-/PR-, HER2-
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Oct 25, 2007 11:51AM Shirlann wrote:

I was a triple negtive, had a lumpectomy and rads, and am 9 years out from treatment and so far, so good.

Hugs, Shirlann

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Oct 25, 2007 12:21PM Nicole_McC wrote:

I was lucky in the sense I did not require radiation treatments.  But my surgeon told me that he still removed 2 lymph nodes because they looked "suspicious".  Now every little ache and pain I have I am worried that it has spread to other areas.  I have not had any scans or xrays since my initial diagnosis.  Is that normal?

Dx 1/17/2007, 3cm, Stage IIa, Grade 3, 0/2 nodes, ER-/PR-, HER2-
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Oct 25, 2007 04:35PM, edited Oct 25, 2007 07:56PM by Watson

2 and one half years out.

lumpectomy, chemo, rads.  One bastard positive node

AC x 4 then taxotere x 4,   33 rads.

Nicole, we all freak a little over aches and pains.  That's just a part of the new normal.  Most mastectomy patients don't have rads.  If you had lumpectomy, rads is a given.

My onc follows standard of care.  Since I am early stage, no scans unless symptomatic.

Watson

I'd rather laugh with the sinners than cry with the saints. - Billy Joel

Dx 1/29/2008, Stage IV, mets, ER-/PR-, HER2+
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Oct 25, 2007 04:37PM Shirlann wrote:

Yes, Nicole, I have had nothing. In California,where almost everyone is in an HMO, they don't do any of the "upper" echelon testing without symptoms.

Sighh, Shirlann

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Oct 25, 2007 05:20PM LisaSDCA wrote:

I have a friend who is a triple neg. 20+ year survivor. Her treatment was a mastectomy.

That's it.

It's such a crapshoot. And she came up very lucky - somebody has to. As I've said before, I try to rub up against her regularly hoping I'll get a bit of it, too. Wink

Lisa

Stage IV mets to brain 11/2008 BRCA-1 positive

Dx 1/24/2007, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Oct 25, 2007 09:48PM Sadie-Rose wrote:

Thank You Everyone,

I hope we continue to get more stories. I forgot to mention I had a lumpectomy and was stage IIb, grade 3.  I had chemo, surgery, and radiation.  I am 3 years out from the end of treatment and 4 years from diagnosis.

My oncologist requested scans about every three months.  I would have an MRI, PET or mammogram and rotate.  Now we are going 6 months out for scans.

Sadie

Dx 9/2003, IDC, 3cm, Stage II, Grade 3, 1/14 nodes, ER-/PR-, HER2-
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Oct 26, 2007 02:36AM Godsgirl wrote:

I will be 2 yrs. this Halloween. I ended up with bilateral and all my nodes taken from all 3 regions, which they could get to safely.I had tumors throughout and nodes not looking the way they should.  More tumors showed up on my Pet under my collar bone, so 3c. I had aggressive protocol chemo and 38 aggressive rads with 27 aimed at my collar bone. I do have a hacking cough sometimes due to the rads.I will be having my genetic counseling on my 2 yr. and a Pet in November.Pray for me. My dr's couldn't believe nothing showed up for my 1 1/2, so I'd like to keep amazing them.Surprised Thanks for listening.
Dx 10/31/2005, IDC, Stage IIIc, Grade 3, ER-/PR-, HER2-
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Oct 26, 2007 05:51AM Sadie-Rose wrote:

Godsgirl,

Way to go!  I hope you keep your doctors on their toes.  What has been most helpful to keep you going?

Have a wonderful day

Sadie

Dx 9/2003, IDC, 3cm, Stage II, Grade 3, 1/14 nodes, ER-/PR-, HER2-
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Oct 26, 2007 07:31AM ravdeb wrote:

Sadie-Rose..that is wonderful to hear that you are a 4-year survivor! Gives us all a lot of hope.

Also, Shirlann, of course!

Godsgirl...you seem to be on the right road..2 years out. That is great. Wishing you many more years of amazing your doctors!

I've had no PET or other scans besides mammo and US. I am going to request digital mammo and/or breast MRI for the next annual mammo because I have dense breasts. They've never offered it to me but the radiologist this time said she couldn't really tell what was there because of the fibrosis. Makes one wonder...

IDC, 2cm, triple negative, grade 3, node neg

Dx 9/5/2005, IDC, 2cm, Stage Ia, Grade 3, 0/1 nodes, ER-/PR-, HER2-
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Oct 26, 2007 08:30AM Gorilla12 wrote:

I am 2-1/2 years out and had a lumpectomy, 4 dose dense AC & rads. So far so good! Stage 1 with no nodes, 1.5cm.

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Oct 26, 2007 10:05AM Nicole_McC wrote:

Thank you for all of your information.  Being new to cancer and these chat boards has offered alot of great information. And of course, GREAT PEOPLE to share stories and experiences with that understand the rest of us when we are having our "down, crappy" days.

I just take one day at a time as if it where my last.  Definately don't leave anything for chance these days......LOL!!!

And now with my hair coming back, I have to start buying shampoo and conditioner again.....hair dye to cover up the gray.......razors for my legs, and BRAS!!!!.......now that I put this on paper (sort of) chemo was saving my husband some money..........LOL!!!!

Dx 1/17/2007, 3cm, Stage IIa, Grade 3, 0/2 nodes, ER-/PR-, HER2-
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Oct 27, 2007 12:28AM Godsgirl wrote:

Sadie-Rose, my hope in God, plus I'm a pretty stubborn person. Also if I left my 2 kids that I have left they would be orphans (16&22). They have been through a lot these last 3 yrs. When my Dr's told me how bad I was I told them I had to stay around at least till my daughter reaches college. They've told me they will try to help me make the 5 years that I've demanded.

ravdeb thank you for your support.

Thanks for the laugh Nicole McC. I have to say you do have a point and I do miss not having to shave.Laughing

Dx 10/31/2005, IDC, Stage IIIc, Grade 3, ER-/PR-, HER2-
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Oct 27, 2007 10:45AM Negative3Grade3 wrote:

I can't tell you how much all of us who are undergoing chemo right now take courage and hope from all of you posting.   I was just wondering if genetic testing played any role in your decision to go for mastectomy rathen than lumpectomy (if you were a candidate for it).  I'm waiting for the BRCA results (had no prior family history with BC but I did it because of the strong association between triple negative and BRCA+).

Dx 9/1/2007, IDC, 1cm, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Oct 27, 2007 12:36PM Traci-----TripNeg wrote:

Hi Everybody....

I'm not 2 years out either but....I'm trip neg and BRCA 1+. Because of that and my little sis had BC 9 yrs ago, I opted for bi-mast and, I'm having a preventative hysterectomy because my other sister had uterin and cervical cancer. I know....not ovarian but, close enough for me.

Some people think I'm crazy for doing it because I'm only....41. But, my surgeon and my oncologist both agree.

Nicole, I had my mast on 3/21 and my chemo ended on 8/16. My oncologist says he will test my markers on 11/15 (3 mos after) and do some kind of scan(s) 6 months after. Man, I'm not looking for to that......

Hugs, Traci

Trip Neg BRCA + If I never look behind me, my troubles will be few. Supertramp.

Dx 2/12/2007, IDC, 6cm+, Stage IIIb, Grade 3, 0/14 nodes, ER-/PR-, HER2-
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Oct 28, 2007 07:22AM Sadie-Rose wrote:

Hi All,

Nicole-I did the same thing. As soon as my hair started to come in I went to the store and bought coloring to cover the gray. It really was an emotional boost for me. It added color around my face. I soon gave up my wig even at work.

My eye brows and lashes came back slower. I learned some tricks to make them look thicker. I don't have to shave my legs as frequently even now and I am four years out from treatment.

My shake and run wig is stored away. My son came home this weekend and saw it and wondered why I didn't throw it away. I told him I thought of it like the old tale about getting rid of all your baby things. Women used to say if you give away all your maternity clothes and baby items, you were sure to get pregnant again. So I just put it away.

I just had a breast reduction to match up both of my breasts and a tummy tuck was added, just two weeks ago. I'm still healing from that, but I am feeling a kind of closure with the surgery over.

I'm excited to go back to work next week. I want to buy a very colorful sweater for the first day--the new me and all. I think only I can tell any difference, but that's what counts.

I'm just enjoying all the little things in life. Life is rich.

Warmly,

Sadie

Dx 9/2003, IDC, 3cm, Stage II, Grade 3, 1/14 nodes, ER-/PR-, HER2-
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Oct 28, 2007 10:17AM GrandmaWolf wrote:

Sadie-Rose,

Don't throw that wig out. There just "may" be some truth to that old wives tale.  

I was also a triple neg 8 1/2 years ago with stage 1.

Just last spring while cleaning out closets, I came across one of the head wraps I had used.  It was my favorite, which is probably why I kept it for so long.  Well, this time I said to myself, this is silly and so I put it in the bag of donated cloths.  Wouldn't you know it.... in Sept I was diagnosis with a brand new primary.

Take heart all you dear triple neg women... it was not associated with my first diagnosis.  Technically, I am clear of that 8 1/2 years out.  However... any one dx with breast cancer has a 5% chance of developing a "new primary". 

Should of kept that cap.

Grandma Wolf 

Dakota Wolf

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Oct 28, 2007 03:49PM, edited Oct 28, 2007 03:51PM by Sadie-Rose

Oh, Grandma Wolf,

I love your name!  You said you have a new primary breast cancer.  Have you received your pathology report yet?  Can you tell us where your emotions are at now?  Do you know what your treatment wil be?

When you were diagnosed 8 years ago, what was your treatment?

I will hold you in my thoughts.  Keep writing.

Warmly,

Sadie

Dx 9/2003, IDC, 3cm, Stage II, Grade 3, 1/14 nodes, ER-/PR-, HER2-
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Oct 28, 2007 07:09PM Rainenz wrote:

GrandmaWolf

Your  tale mirrors my own I was dx in Jan 97 and had a lumpectomy, chemo and rads for a triple neg stage 2b, grade 3, node pos tumor.  All went fine till June 2006 when a new primary was dx in the other breast, went for another lumpectomy but had to go back for a mast.

Am now 16 months along and doing fine.

Rainenz 

Dx 1/1997 3.5cm Medullary, Grade 3, 6/14 nodes er-/pr-, her2 -

Dx 6/2006, IDC, 3cm, Stage IIIc, Grade 3, 29/34 nodes, ER-/PR-, HER2-
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Nov 5, 2007 07:19AM Sadie-Rose wrote:

Hi Everyone,

I just want to keep this thread going so we can hear from as many women as possible.

Triple negative breast cancer is such a puzzle and there doesn't seem to be one best treatment path.  One decision my doctors and I made that I hope has long term positive outcome for me is that we did two surgeries.  First, we removed some lymph nodes to know if my cancer had reached them.  I had one positive node.  Then we started chemotherapy AC.  After three rounds, I did another MRI and it showed no change in my tumor size. This allowed us to change my cocktail to T and Carblplatin.  Again, I had another MRI and the tumor did get smaller.  Then I had surgery to remove the tumor.  Of course I also had radiation.

There are posters who say it is all random and you never know. I hope new research will help us unravel this mystery.

Thinking of you all,

Sadie

Grandma Wolf-I did keep my wig, but I hope not to wear it again.

Dx 9/2003, IDC, 3cm, Stage II, Grade 3, 1/14 nodes, ER-/PR-, HER2-
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Nov 5, 2007 07:19AM Sadie-Rose wrote:

Hi Everyone,

I just want to keep this thread going so we can hear from as many women as possible.

Triple negative breast cancer is such a puzzle and there doesn't seem to be one best treatment path.  One decision my doctors and I made that I hope has long term positive outcome for me is that we did two surgeries.  First, we removed some lymph nodes to know if my cancer had reached them.  I had one positive node.  Then we started chemotherapy AC.  After three rounds, I did another MRI and it showed no change in my tumor size. This allowed us to change my cocktail to T and Carblplatin.  Again, I had another MRI and the tumor did get smaller.  Then I had surgery to remove the tumor.  Of course I also had radiation.

There are posters who say it is all random and you never know. I hope new research will help us unravel this mystery.

Thinking of you all,

Sadie

Grandma Wolf-I did keep my wig, but I hope not to wear it again.

Dx 9/2003, IDC, 3cm, Stage II, Grade 3, 1/14 nodes, ER-/PR-, HER2-
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Nov 5, 2007 08:52AM AlaskaDeb wrote:

Hey ladies -

I always love to hear people's stories. 

I think I might be one of the people that you were talking about saying it is all random.  Maybe I didn't explain myself very well....

My own thoughts are that the statistics of a group actually have no bearing on my personal cancer journey.  With all the factors involved: the genetic make up of my cancer, my treatment, my immune system, my nutrition and vitamins, maybe even my state of mind, I don't think I can foresee how my course with this cancer will end.  I hope in time the docs can do a simple blood test and tell us who needs exactly what treatment.

Statistically, I should at least have mets and most likely be dead right now. 

My oncologist said something to me early on that has really stuck with me.  I was begging her to give me some hope because my odds sucked.  She took my hand and told me that she just didn't know.  She said that either my cancer cells would behave and die with all the treatment or they wouldn't.  She said there was no way to predict whose cells would be cooperative and DIE and whose wouldn't.  THAT is the crap shoot.  Either the weapons we have available to us will work, or they won't....no matter what the statistics say.

Statistics have a use.  They can tell you what treatment plan will give you the best odds of survival....but they can't tell you empirically if they will work for your specific cancer cells.

SO...once I picked my treatment plan I asked my doc to chuck all the stats out the window and treat me as if I was going to live.  God bless her, she did.  I found my hope after I quit obsessing about numbers.

Does any of this make sense?  I am not saying we should stick our heads in the sand and not gather information, including what the statistics say.  I just think we need to acknowledge that NO ONE knows what any individual person's results will be....that is the crap shoot.

I went in for my check-up last week.  My doc asked if she could share a statistic with me.  I told her yes and she smiled when she said for the first time since this whole damn thing started the odds were now in my favor to live five years.  We had a good laugh about it and went on....but really, that statistic, as reassuring as it should be, really doesn't mean anything either.

I guess it is a matter of perspective.  If gathering stats gives you hope and makes you feel better, then by all means, do it...but if you are one of the ladies who only got BAD news from the stats...feel free to chuck the whole works out the window.  No one knows how cancer will react in your body...no one.  Someone has to beat the odds and I am determined to try. 

Deb C

http://glassylady41.spaces.live.com/

Dx 2/29/2008, IDC, 3cm, Stage IV, Grade 2, 27/32 nodes, mets, ER-/PR-, HER2-
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Nov 5, 2007 01:56PM Sadie-Rose wrote:

Hi Alaska Deb,

I do understand what you are saying. I think I was the one who wasn't clear. My oncologist told me the same things you just said. If I have to choose a statistic to hold on to today, I would choose the three year window one. Wink My oncologist was really pleased when I passed that mark.

Thank you for your reply. I love reading your entries.

Sadie

Dx 9/2003, IDC, 3cm, Stage II, Grade 3, 1/14 nodes, ER-/PR-, HER2-
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Nov 6, 2007 08:00AM slanderson wrote:

I was 2 years this past July and all's well so far.  I had a lumpectomy with rads, and TAC x 6.  My lump was 1.7cm, grade 3.  Node status unknown because of location of lump.

Thanks, Shannon

Shannon

Dx 7/13/2005, IDC, 1cm, Stage I, Grade 3, ER-/PR-, HER2-
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Nov 6, 2007 08:18AM Msklapkin wrote:

I was diagnosed 8/05-I was triple negative IDC, BRCA2+, 1 sentinal node positive

I had bilateral mast, dose dense chemo-AC x4 and Taxol x4, then oopherectomy.  Finished chemo in Feb 2006.

Now 2+ years out- go to onc every 6 months for blood tests.  Never had scans.  Feeling good and onc was so happy when we passed 2 year mark.

I still thank God and pray every day!

Light and love to you all

susan

Dx 8/8/2005, IDC, Stage IIb, Grade 2, 1/8 nodes, ER-/PR-, HER2-
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Nov 6, 2007 09:00AM Nicole_McC wrote:

the more I read the more confused I get about triple negative diagnosis.  I am only 4 months out from my last chemo and I had bilateral mastectomy.  My worry is that it will metastisized elsewhere and be worse then it was before.  I am also BRCA negative which really tells me that are not sure why I got breast cancer to begin with.  I was healthy, active and exercised religiously, then BAM!!!  a 3.2 cm lump shows up "over night".  It was only 4 weeks from my annual physical to my breast cancer diagnosis.  Why me?? What did I do?  What could I have done different?  Then they paint this gloom and doom picture because of my age, the stage, the grade and NOW triple negative on top of it!!  I am more angry NOW then I was when I was going through my treatments.  I am not one to just sit back and wait for anything and from what I am reading all over the place, it's just a matter of time before recurrance.

This is driving me crazy!!! 

Dx 1/17/2007, 3cm, Stage IIa, Grade 3, 0/2 nodes, ER-/PR-, HER2-
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Nov 6, 2007 11:11AM Watson wrote:

Nicole,

Remember that a lot of the women who post regularly on these boards are here because of a recurrence or are going through this for the first time.

Think of how many women did their treatment, posted a few more times and then got busy LIVING and don't really have the need to come back and post. 

I know how hard it is to not DO anything, but don't the the bitterness take over.  At the end of treatment a lot of us triple negs get nervous because our 'safety net' of chemo is gone.  But it gets better.

Go out and have fun!

Watson

I'd rather laugh with the sinners than cry with the saints. - Billy Joel

Dx 1/29/2008, Stage IV, mets, ER-/PR-, HER2+
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Nov 6, 2007 12:13PM Nicole_McC wrote:

Thank you Watson,

This is my first time going through breast cancer.  I have not been out of treatment that long.  Don't get me wrong, I am getting out and living life again since my completion of chemo.  But it is always in the back of my mind, the what if's.  I believe that is just human nature kicking in.

I am just asking questions from the women here that HAVE gone through this before.  Knowledge is power.  

Dx 1/17/2007, 3cm, Stage IIa, Grade 3, 0/2 nodes, ER-/PR-, HER2-
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Nov 6, 2007 02:19PM Watson wrote:

Kiss

I'd rather laugh with the sinners than cry with the saints. - Billy Joel

Dx 1/29/2008, Stage IV, mets, ER-/PR-, HER2+

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