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Topic: Triple Negative, Stage 1 Thinking NO CHEMO

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Feb 13, 2016 01:07PM - edited Feb 13, 2016 01:08PM by KPittman

KPittman wrote:

Hello all,

I'm 44 years of age just recently diagnosed with cancer. My oncologist recommends carboplatin & paclitaxel chemo. After much research, I'm looking for alternatives to chemo. I am a PALB carrier and I'm not sure chemo would add any benefits to my situation. Is there anyone else that could shine some light on this for me? I know every individual is different, I'm just curious as to how many (if any) triple negative individuals did not do chemo.

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Feb 13, 2016 01:50PM debiann wrote:

I think that being a PALB carrier just means you were at an increased risk of developing cancer, which you did. I don't think it has any correlation with how effective treatment would be. 

Triple negatives are often recommended chemo to reduce the risk of a distant recurrance in the event that some cancer cells have already left the breast. Since anti-hormone therapy is not for you, chemo is the only systemic treatment available for triple negative. Surgery and radiation can only prevent local recurrance.

A second opinion may help you decide.

Chemo sucks, we'd all like to skip it, but if you decide to do it, its something you get through in a few months and then put it behind you and get on with your life.

Good luck to you.

"I live knowing it will be ok when I'm not." Dx 3/2014, IDC, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 4/3/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Targeted Therapy 5/8/2014 Herceptin (trastuzumab) Chemotherapy 5/8/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 9/29/2014 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 11/5/2014 Arimidex (anastrozole)
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Mar 18, 2016 08:03PM farmgirl31 wrote:

I just signed up here to talk to you. I am a year and a half out from ending my treatments for 3neg. I was stage 1a grade 3 no node involvement. I was told I didn't need chemo because it was caught early. I did have rads, whole breast and they zapped my ribs and lung too. I'm curios to see what you decided

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Mar 18, 2016 09:41PM Meow13 wrote:

farmgirl31, how big was your tumor? I can't believe grade 3 invasive triple negative cancer and no chemo advised.

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Mar 19, 2016 03:58PM farmgirl31 wrote:

It was 2 cm with a 1 cm satellite. I knew it was er-,pr- after the biopsy and didn't understand anything abut that. Then found out her2- also and that that was bad. KI67 was 47%. The rad onc was the one who let me know that that was not good and has questioned the no chemo every since. He radiated my chest wall, ribs and partner my lung.

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Mar 20, 2016 03:09PM chi-girl wrote:

My onc said that they don't recommend chemo for TN tumors under 5mm (.5cm). Mine was 6mm, so right over the line. I remember specifically asking the question and the answer.

This was back in 2012, so the standard of care guidelines may have changed between then and now.

Dx 1/31/2012, IDC, Right, <1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (IHC) Surgery 3/5/2012 Lumpectomy: Right Chemotherapy 3/27/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 6/16/2012 Whole-breast: Breast
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Mar 20, 2016 03:44PM Cathytoo wrote:

farmgirl31......It's too late now to second guess yourself and the treatment. My tumor was 2cm, no node involvement and clean margins. I consulted with four oncologists who ALL AGREED that chemo was needed...aggressively AND radiation. From what I've been told and read, the ONLY treatment for TN is Chemo. Radiation kills any cells left in the breast. With TN, it's cells that have left the breast that need treatment. My oncologist told me that no one ever dies from cancer in the breast. It's cancer that recurs distantly that will kill you. But, at this point in time, just live as healthy as you can and hope for the best. This is what you would do even if you had Chemo. With TN there is no sure thing

Dx 10/13/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- Chemotherapy 1/18/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Mar 20, 2016 06:33PM farmgirl31 wrote:

I'm sure I won't get BC again. I'm not worried about it. Only 1 cousin has had it also. So not much family history. We eat clean and raise our own meat so I know what goes into my body. And I know God is in control and He has given me a peace about it. I'm just curious about how others are being treated and what went on behind those decisions.

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Mar 20, 2016 10:14PM Meow13 wrote:

one thing to note triple negative risk of recurrence goes down significantly after 5 years

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Mar 29, 2016 05:05PM ForeverOptimistic wrote:

Hi - I was diagnosed with TN in June 2015. After the lumpectomy, they have me an 85% chance of remaining clean. I declined chemo and radiation. Another lump appeared in January. I'm meeting with the oncologist tomorrow to discuss treatment options.

I have a relatively healthy lifestyle. Social drinker, non smoker. My father has bladder cancer, but the remainder of the family is healthy. I'm seeing a naturopath for vitamin C iv and do mistletoe injections. I'm also seeing an osteopath.

I'm getting my body as prepared as possible for the medical system.


Surgery 6/20/2015 Lumpectomy; Lymph node removal: Underarm/Axillary Dx 3/3/2016, Right, 3cm, Grade 2, 0/3 nodes, ER- Chemotherapy 4/2/2016 AC + T (Taxotere) Surgery 11/12/2016 Lumpectomy: Right; Lymph node removal Radiation Therapy 1/11/2017 Whole-breast: Breast, Lymph nodes
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Jul 16, 2016 11:50PM KPeace wrote:

My tumor is 4 mm, no node involvement, Ki 40%. One oncologist recommended no chemo, consistent with NCCN guidelines. It is most likely path I will follow. Wishing you well

DX 5/10/2016, IDC left, 4mm, Stage Ia, grade 2, neg node, lumpectomy 6/6/2016, rad to start 8/25/2016, BRCA -, ER-/PR-, HER2-
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Jul 17, 2016 03:55AM Meow13 wrote:

That is interesting I guess if tumor is less than 5 mm they don't think it has escaped from breast. Mine was 1.2 and 1.1cm

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Jul 17, 2016 11:16PM JanetCO wrote:

My tumor was 2.4 cm and I was recommended chemo for TNBC then radiation

Dx 6/9/2016, DCIS/IDC, Left, 2cm, Stage IIA, Grade 3, 1/1 nodes, ER-/PR-, HER2-
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Jul 20, 2016 04:47PM Bowleranna wrote:

I had Tripple Negative Stage 1. I received radiation. No Chemo. Just finished treatment two weeks ago. Will be glad when side effects from treatment are over. The deep itching is the worst. Nothing helps. I know I'm not suppose to scratch. I'm using Aquaphor and Regenecare and aloe. Hopefully the effects will be gone in a couple of weeks.

Dx 3/2016, IDC, Left, <1cm, Stage IA, 0/1 nodes, ER-/PR-, HER2- Radiation Therapy 5/24/2016 Whole-breast: Breast
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Oct 20, 2016 06:08PM - edited Oct 20, 2016 06:12PM by Sister-Sister

Hello KPitman, I've been where you currently are. In Sept 2012, I had Stage 1 Breast Cancer not in Lympnodes, had a Lumpectomy and Radiation, declined Chemo, bad mistake. In Feb 2016 Metastasis to my Lung and Brain. I finally accepted Chemo which was only for my Lungs.Please think about it, once Cancer Spread, your Life becomes complicated. Aug 2016 I lost my ability to walk, talk and have normal functions because Cancer went Rogue in my Brain. I was hospitalized and not receiving my Chemo, I had Whole Brain Radiation and Physical Therapy. I was doing well until October 12th, unable to Breathe, had Plueral Effusion (Fluid around Lungs) that happen when you're off you Chemo pills, I currently have Chest Tube and on Oxygen. My advice is get the Chemo, if you have side affects your Dr. can prescribe you Mets. Don't make the mistake I di

Dx 9/24/2012, IDC, Right, 1cm, Stage IA, Grade 1, 0/7 nodes, ER-/PR-, HER2- Chemotherapy 2/5/2016 Abraxane (albumin-bound or nab-paclitaxel) Surgery Lumpectomy; Lymph node removal: Sentinel
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Nov 3, 2016 03:33AM gymgirl1940 wrote:

Did any of your sentinel nodes show micro metastasis (cancer cells)? If not there is a high probability that no cells escaped the primary tumor(s). In my case I had no sentinel node involvement and my cancer was Stage 1C. Still I elected to have chemo because TN is highly susceptible to it. I wanted to increase my survival chances. I am now 7+ years cancer free. My oncologist thinks I am essentially home free. Maybe chemo didn't really do anything for me and it was no picnic but I am glad I did it.

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Nov 3, 2016 03:43AM - edited Nov 3, 2016 03:49AM by Meow13

Has anyone heard of a test for circulating tumor cells? I thought I read something about it for use in determining if metastases is present. I could be crazy but I thought I read about it briefly.

https://www.cellsearchctc.com/about-cellsearch/wha...


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Nov 3, 2016 09:54AM aterry wrote:

Yesterday my MO said that "wet tests" were being developed and explained that that meant blood tests. She didn't mention the specific research but it may be the one you've referenced.

Dx 10/13/2016, IDC, Left, 1cm, Grade 3, ER-/PR-, HER2- Surgery 4/18/2017 Radiation Therapy 5/23/2017 Chemotherapy AC + T (Taxol) Targeted Therapy Targeted Therapy
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Nov 3, 2016 10:25PM - edited Jan 20, 2018 11:24PM by VLH

Why only metastatic, I wonder? Given that chemo seems hit or miss for those of us with early stage triple negative (IIa in my case with some genetic mutations associated with secondary tumors & chemoresistence), I would like to know if my chemo was successful at the end of my treatment plan rather than just waiting around with dread wondering if every headache or cough is metastasis.

Lyn

Dx 5/20/2016, IDC, 2cm, Stage IIB, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
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Dec 21, 2016 12:35PM KellyAnne13 wrote:

Please don't forget that the only nodes tested are generally in the axilla. You still have intramammary nodes under your sternum that could be a portal for mets.

Dx 1/15/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/7 nodes, ER-/PR-, HER2- Surgery 2/13/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 3/16/2015 AC + T (Taxol) Surgery 9/21/2015 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement Surgery 10/15/2015 Prophylactic ovary removal
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Dec 21, 2016 01:12PM ElaineTherese wrote:

Also, remember that cancer cells travel through your bloodstream as well as through your lymph system. Invasive cancers have a blood supply, and that blood circulates throughout our bodies.

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/22/2014 AC Targeted Therapy 9/16/2014 Perjeta (pertuzumab) Targeted Therapy 9/16/2014 Herceptin (trastuzumab) Chemotherapy 9/16/2014 Taxol (paclitaxel) Surgery 1/11/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/24/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/8/2015 Breast, Lymph nodes
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Dec 23, 2016 12:40AM Meow0369 wrote:

I know of ladies here and my OBGYN that only had DCIS that decided to do chemo. My Drs at Stanford said the guidlines for a tumor larger than 5mm is to do chemo.im sure other factors like the grade and size matters too. I had a 2mm and another 4 mm with additional DCIS on one breast (that's why I'm staged 1b)and did chemo but no radiation which I'm alittle perplexed about. They said it wouldn't do any good and that my tumors were small and I had bimaxtecomy. Since I had microinvasion the chemo would take care of that.

Dx 3/1/2016, DCIS/IDC, Both breasts, <1cm, Stage IB, Grade 3, 0/5 nodes, ER-/PR-, HER2- Surgery 4/25/2016 Lumpectomy: Left; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/20/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery
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Jan 9, 2017 09:00PM lsm5253 wrote:

Hello ladies,

Thank you for sharing your journey. TNBC certainly has it's challenges to figure out. This is my 2nd round with breast cancer. I was initially diagnosed in March 2008 with Invasive Grade 3 DCIS, Lumpectomy, 0/12 nodes, 35 radiation treatments, no chemo. January 2009, my health guru's didn't read my previous mammo;s dating back 5 years that discussed micro calcifications which were removed with a Low grade 2 DCIS pathology. I then had a Right mastectomy with immediate reconstruction. 12 surgeries later, I hoped that it would be over.

July 2016, I was diagnosed with left breast cancer. I had a mastectomy Dec 15 2016 and the pathology results determined a combination of DCIS Grade 3 invasive(which my oncologist is not worried about), and (1) one tumor that is TNBC invasive grade 3 - this one is the problem. My medical care has been pretty messed up and I am just now getting a medical team that cares. I hope to find out my options this week. What do I know... sentinel lymph node clear, and other lymph nodes removed clear, no vascular invasion seen in the breast tissue, TNBC tumor size is 1.3. The reason it is invasive is because I let them biopsy the tumor... big mistake with my history. Totally regret that decision.

I have not completely healed from my mastectomy and will require additional surgery to correct which will clearly hold off any chemo treatments at this time.
Good grief... anyone hear of clinical trials that are worth looking at? I will confirm but fairly confident that I will be considered a stage 1... however, with 2 different types... who knows.

Hugs to all, stay strong. Any thoughts would be appreciated.

Lor

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Jan 9, 2017 11:30PM - edited Jan 10, 2017 12:23AM by Meow0369

Hi Ism5253, so sorry for your reoccurrence and medical team dilemma. I feel your frustration. Good there's no node involvement. Forgive me for asking , why was it a bad to do the biopsy. Are they a advising to wait on chemo?My MO said the sooner the better after surgery. I held off fills for recon to do chemo. I finished in Sept and waiting to remove my ovaries next.

By the way I was offered a study with a pill called Olaparib.

Dx 3/1/2016, DCIS/IDC, Both breasts, <1cm, Stage IB, Grade 3, 0/5 nodes, ER-/PR-, HER2- Surgery 4/25/2016 Lumpectomy: Left; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/20/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery
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Jan 13, 2017 02:14PM ChattyKat wrote:

Farmgirl31 you didn't say the size of your tumor. I also was 1a, grade 3, 1.5 cm tumor but I had 4-1/2 months of chemo the first 8 weeks double dose AC and 12 weeks of paclitaxol. Finished 12/13/16. Just started radiation (21 days) yesterday. It was difficult to go through but I don't think I would take the chance of not having it.

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Jan 15, 2017 02:24PM sunnyspot wrote:

Hi I am new to the forum and new to posting on a forum in general so I have NO IDEA what I'm doing!!!! Hope I'm doing it right. I was diagnosed with TN in July 2013, approximately an 8mm tumor with DCIS, the worst- grade 3 but stage 1. I went on to have 2 surgeries- one in August with no clean margins so I went in again September and got clean margins then. 0/8 sentinel node dissection. I was 49 years old at the time, in the best health and place in my life and then I heard the dreaded words from my onc- chemo. He highly recommended I get dose dense AC-T 8 sessions to be assured I did all I could to get rid of this beast. I was at Memorial Sloan Kettering (their branch out on Long Island, surgery was performed in Manhattan) so I felt I was getting the absolute best opinion on what I should do. He highly advised I take this opportunity to get rid of this once and for all because if it came back it was going to "be ugly" (his exact words), he wanted to throw whatever was available at it. Scared me out of my wits because here I was thinking this was a pretty tiny tumor and I could go either way. He left it up to me and I took his advice and went the chemo route. I am SO SO glad I listened and would do it again in a heartbeat. The extra security I found from having the chemo under my belt is immeasurable. I don't know how I would've made it through these few years without the knowledge I had done all that I could. Every twinge, every ache, every pain makes me just cringe with fear. I just want to make it to my 5 year mark and start breathing again. I just wanted to say that I had no idea at the time how I was going to react after treatment was done, how I was going to feel, but having done all I could possibly do REALLY helped me in my journey. I also had the standard radiation schedule and my treatments weren't a piece of cake but I wouldn't say I was tortured either. And nobody knows how chemo will affect them. I was always PETRIFIED of getting chemo and having to have to go through chemo- and you know what, the FEAR I had was the worst side effect I actually encountered. I was strong and tolerated chemo very well and it surprised me after I was done how manageable it was. I know this is not the case for everyone but it was for me and I'm glad I didn't let fear take over. My onc made sure I got every medication that helped counteract the side effects and I NEVER threw up once and I was actually the opposite- hungry from the steroids! It was a very trying journey but the love, support and guidance I got made me come away with encouragement that I could beat this and LIVE!!!! Just wanted to share my story so maybe someone on the fence can get a little insight from someone who decided to go the chemo route. MUCH HEALTH and good wishes to all here!!!! XXX OOO

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Jan 15, 2017 07:28PM Mdickson wrote:

45 yo. Diagnosed with TNBC, stage 1 grade 3, clean margins. Bilateral mastectomy, implant reconstruction. They are recommending chemo as a preventative for any microscopic cells that could be undetectable in the bloodstream. I'm struggling with treating with chemo when I don't actually, best that can be determined, have active cancer. Prohibited from rads due to previous treatment for Hodgkins in my 20's. The recurrence percentage margins between doing and not doing chemo are about 25%. Anyone on this forum refuse chemo? Current status? Thoughts in genersl

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Jan 15, 2017 08:54PM Moderators wrote:

Dear sunnyspot, Thanks for sharing your story. We appreciate it as we know that out members do as well. Please stay connected here as you can and keep us posted. The MOds

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Jan 15, 2017 09:08PM Moderators wrote:

Dear Mdickson, Welcome to the BCO community. We are sorry that your cancer brought you here but glad that you reached out. Please keep us posted and let us know how things go for you. You are warmly welcomed here. The Mods

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Jan 16, 2017 12:12AM - edited Jan 16, 2017 12:24AM by Meow0369

Mdickson, how big was your tumor? I was terrified of chemo I watched my mom go through it twice but us having TN it's the best treatment for its aggressiveness. I almost didn't do it either. You can get a second opinion. Your young ( I'm 43)enough to do well on it and avoid mets. Can't mess with cancer. If you do decide to do chemo look into cold capping to try to save your hair. Some ladies kept most of their hair. There's a lot of info here on this site. I was not offered radiation ,some ladies do well w chemo. It was hard for me but knew this wasn't something I could wish away.

Dx 3/1/2016, DCIS/IDC, Both breasts, <1cm, Stage IB, Grade 3, 0/5 nodes, ER-/PR-, HER2- Surgery 4/25/2016 Lumpectomy: Left; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/20/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery

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