Triple Negative-How are you doing?

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Nuzzys Nana
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Re: RE: Triple Negative-How are you doing? - Saturday, April 11, 2015 9:10 PM
I'll be thinking of you. Please let us know how you are when you are when you want to communicate. Best wishes.
Lumpectomy 4/14/05 at age 69
Stage 1, 2cm, Node Negative
Grade 3, Triple Negative
AC/Taxol, Radiation,
BRCA2 positive (It's always something!)
No Family History

Sadie Rose
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Re: RE: Triple Negative-How are you doing? - Saturday, April 11, 2015 11:54 PM
Thank you Nuzzys Nana!  I'm sending you positive energy too!

Sasha0124
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Re:Triple Negative-How are you doing? - Friday, May 08, 2015 4:43 PM
Hi everyone! I am new to this website and forum. My 62 year old mom was just diagnosed with triple negative metastatic breast cancer. She had a <2cm primary tumor (right breast at 7 o'clock) and 20 lymph nodes under her arm removed (only 3 were positive for cancer cells). The pathology report from the surgery indicated that lymph vascular invasion was present. Her cancer was considered grade 2 from the core biopsy report, but is now grade 3 from the surgery report. Since the surgery, she has had a CT scan & bone scan of her body (head CT upcoming). The oncologist told us that a spot was found on her L4 pedicle that had a high uptake, which makes them suspect it's metastasized cancer from the breast. She has no physical symptoms of this (ie. no pain). Therefore, she has been diagnosed with Stage IV metastatic breast cancer - without treatment she has maybe 1 year, with treatment maybe 2-3 years as the cancer is extremely aggressive. The oncologist felt that it had been present for less than a year before it was caught. My question is - how likely is it that the spot found in the CT/bone scan on her L4 pedicle is breast-to-bone cancer? My understanding is that bone mets don't usually show up for a good length of time from the initial diagnosis and breast cancer tends to invade the visceral organs first. And if the cancer is, in fact, that aggressive, shouldn't we expect to see more mets in more than one spot right now? Thank you in advance for your time

Tricia Keegan
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Re:Triple Negative-How are you doing? - Friday, May 08, 2015 6:14 PM
Hi and welcome and so sorry for your Mom's dx, bone mets are the easiest to treat and we have many members a few years out doing well with this dx so not sure why you were told a year and think your Mom needs to get a second opinion.A bone scan alone can show many hot spots other than cancer that can be old injuries or arthritis etc and can't be relied upon, an MRI or  CT/Pet would give you more answers.

IF this is bone mets it can show up early on in her2+ breast cancer and spread there first but should be easy to treat as I said earlier and the outcome should be far better than what your Onc is saying so would seek another opinion. 
<message edited by Tricia Keegan on Friday, May 08, 2015 6:24 PM>
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Nuzzys Nana
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Re:Triple Negative-How are you doing? - Friday, May 08, 2015 7:24 PM
I too had triple negative bc and was told I had a "poorer prognosis". But here I am, ten years later. The thing about triple negative, is that it is fast growing and the belief is that if it is going to spread and re-appear it will do so within the first 2 years. Chemo works very well on fast growing cells, which is what Grade 3 is. New treatments are coming on line all the time. Please do not give up hope and encourage your mom to get all the treatment that is offered. She may also qualify for clinical trials.*********** Best wishes to you and your family and keep us posted.
Lumpectomy 4/14/05 at age 69
Stage 1, 2cm, Node Negative
Grade 3, Triple Negative
AC/Taxol, Radiation,
BRCA2 positive (It's always something!)
No Family History

karey
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Re:Triple Negative-How are you doing? - Thursday, May 21, 2015 1:33 AM
On June 6th it will be seven years since I finished chemo. I just got the results yesterday from my annual mammogram and everything looks good.
Kathy
Diagnosed at age 47
DX: 12/13/07 IDC Stage IIa Grade 3 3.5 cm TN
Lumpectomy 1/30/08 SNB neg
Chemo-2/29/08: 4 A/C 4 Taxol-Done 6/6/08! NED!
33 Rads 7/7/08-8/20/08 Done!
12/10/09 Now Ruptured Brain Aneurysm Survivor!

Tricia Keegan
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Re:Triple Negative-How are you doing? - Thursday, May 21, 2015 4:00 AM
Wonderful news and many congrats!!!
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

gordon
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Re:Triple Negative-How are you doing? - Monday, November 23, 2015 6:41 PM
My wife was dx earlier this year Triple Negative w/ metaplastic w/ squamous, she had Carboplatin-Gemzar chemo, the therapy killled the cancer in 3-4 lymph nodes, but there was still 1.5cm cancer in her tumor, reduced from 3-4cm, now she's getting 12 weekly taxol after single masectomy and (5) armpit nodes removed. Our question now is does she need radiation over the entire breast area, the clavicle lymph node area, and whats left in the armpit? Is this over-kill?

Nuzzys Nana
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Re:Triple Negative-How are you doing? - Monday, November 23, 2015 7:11 PM
Does your wife have a radiologist? If so, that doctor will map out a plan for the treatment deemed best. Or, you already gotten an opinion? No one is forced to accept a doctor's recommendation. If your wife is not satisfied with one doctor's opinion she should seek one from another doctor. I wish her well.
Lumpectomy 4/14/05 at age 69
Stage 1, 2cm, Node Negative
Grade 3, Triple Negative
AC/Taxol, Radiation,
BRCA2 positive (It's always something!)
No Family History

karey
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Re:Triple Negative-How are you doing? - Monday, November 23, 2015 10:22 PM
TNBC can be extremely aggressive and unlike other breast cancers drugs like Tamoxifen or Herceptin are useless. Surgery, chemotherapy and radiation is all we have. That's the bad news. The good news is it can respond extremely well to chemo and radiation and we don't have to deal with the side-effects of hormone therapy. I had to make a choice between a lumpectomy and a mastectomy nearly eight years ago. One of the things that caused me to lean towards a lumpectomy was because I learned that as a triple negative, it was still recommended that I have chemo and radiation treatment even if I had a mastectomy. I had no lymph node involvement and yet I had the same radiation treatment you are asking about. If that is being recommended by her radiology oncologist, then I would say no, it is not over-kill.
Kathy
Diagnosed at age 47
DX: 12/13/07 IDC Stage IIa Grade 3 3.5 cm TN
Lumpectomy 1/30/08 SNB neg
Chemo-2/29/08: 4 A/C 4 Taxol-Done 6/6/08! NED!
33 Rads 7/7/08-8/20/08 Done!
12/10/09 Now Ruptured Brain Aneurysm Survivor!

Tricia Keegan
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Re:Triple Negative-How are you doing? - Tuesday, November 24, 2015 5:31 PM
No, not over kill at all Gordon and as this is an aggressive cancer it's worth treating aggressively too as you only get one chance to beat this.
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

gordon
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Re:Triple Negative-How are you doing? - Monday, November 30, 2015 2:50 PM
Thank you all for the replies. My wife did get her surgery's teams radio-oncologist's opinion and he want to irradiate everything but was'nt specific on what/why/. My wife's main concern is she will lose her port and she can't have it on the other side clavicle area b/c she had radiation in 2008 on other side. He said they can use the neck or ankle for a port in the future, if needed. She has lymphedema in other arm so wrist can't be used. She has collapsable veins in good wrist, hard to acess without several tries. But if she needs clavicle area nodes irradiated, that's going to be done. Do they do the under-sternum ones? The margin was clear to 1cm, which I know means not much with this aggressive cancer, after masectomy. She's getting weekly Taxol now for 12 weeks. Also, we heard a thyroid shield is a good idea? thanks for all info on this. Gordon.

Tricia Keegan
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Re:Triple Negative-How are you doing? - Tuesday, December 01, 2015 3:25 AM
Gordon I haven't heard of anyone using a thyroid shield so can't help you there, the rads are to zap any stray cells after surgery that may be lurking so is worth doing if recommended.  I can understand your wife's concern about her port, maybe she could have a PICC  line in her good arm? I had rads to three area's, under arm, breast and clavicle.
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

gordon
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Re:Triple Negative-How are you doing? - Saturday, December 05, 2015 4:01 PM
Thanks for you reply. My wife doesn't think she has a "good arm" because she got lymphedema in her left arm in 2008, she does not want to get it now, in her right arm, where they took out 5 nodes, they did use her hand, near the thumb on her left arm, during surgery/masectomy. That is her lymphedema arm. The surgeons and oncologists and anestiesologiasts are trying their best to avoid he geting lempedema again in her arm, my wife just doesn't want them to use this new arem, after surgery, to avoid anothe lymphe-arm, she has a phisio-therapist availaiable if any swlling in her new arm. Apparantley, even taking blood-pressure around the thigh is not accurate, I'm sure they will decide on something... thanks.

karey
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Re:Triple Negative-How are you doing? - Saturday, December 05, 2015 11:14 PM
This wasn't for chemo but I had to have a neck port a few years ago after having a subarachnoid hemorrhage due to a ruptured brain aneurysm. According to what my husband says, they did not want to use my left arm due to the high-risk of lymphedema even though I only had two lymph nodes removed. They tried to use my right arm but due to its history of being a pin cushion over the past few years plus my physical condition, all attempts to use it failed so they did a neck port.
Kathy
Diagnosed at age 47
DX: 12/13/07 IDC Stage IIa Grade 3 3.5 cm TN
Lumpectomy 1/30/08 SNB neg
Chemo-2/29/08: 4 A/C 4 Taxol-Done 6/6/08! NED!
33 Rads 7/7/08-8/20/08 Done!
12/10/09 Now Ruptured Brain Aneurysm Survivor!

gordon
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Re:Triple Negative-How are you doing? - Monday, December 07, 2015 6:29 PM
thanks for you reply, I will tell my wife

Three dogs
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Re:Triple Negative-How are you doing? - Wednesday, March 16, 2016 8:53 AM
I'm new to this forum.  I've actually never done a forum before.  I was diagnosed with Triple negative in January 2016.  I am on my 4th A/C chemo.  I am grade 3, Stage 2 and 3 cm tumor in left breast.  I am 56 years old and BRCA 1 and 2 negative.  I was looking for some statistics which are hard to find.  Any help?

Tricia Keegan
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Re:Triple Negative-How are you doing? - Wednesday, March 16, 2016 10:11 AM
Hi and welcome, I'm sorry for your dx but can't help with your question but I think just about all the triple neg members that were dx with me almost eleven years ago now are still doing great and enjoying life.  We often say here not to pay attention to stats as they're just a number and we all will react differently to treatments.  Good luck with the rest of yours, I had a/c too and was glad to get the last one finished.  This is a triple neg site so if you're determined to read stats they may have some here http://forum.tnbcfoundation.org/
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

nuzzysnana
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Re:Triple Negative-How are you doing? - Wednesday, March 16, 2016 7:41 PM
In April, I will reach my 11th cancerversary since diagnosis and treatment. Triple negative tumors respond very well to chemo. I found out I carried the BRCA2 mutation two years after treatment. So far, no more problems. I celebrated my 80th birthday in January and am looking forward to at least another 11 years! If you have questions you can contact me with a Private Message. Best wishes.
Diagnosed in 2005 at age 69 Two Centimeter IDC, Stage 1, Grade 3, Lumpectomy, Dose dense chemo, radiation. No family history. Tested positive for BRCA2 in 2007 Who knew?

MarciLyn
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Re:Triple Negative-How are you doing? - Thursday, May 05, 2016 6:36 PM
Was just diagnosed 2 weeks ago with Triple Negative grade 3 stage 1. Had a lumpectomy on Monday and a port placed for chemo. Things have moved so quickly, I meet with the oncologist next week to get my chemo set up. Just nice to be able to get on this site and to read about POSITIVE outcomes. "Walk in Faith not in Fear"

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