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Triple Negative, Stage 1 Thinking NO CHEMO

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KPittman
KPittman Member Posts: 1

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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Comments

  • debiann
    debiann Member Posts: 447
    edited February 2016
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    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.

  • farmgirl31
    farmgirl31 Member Posts: 3
    edited March 2016
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    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

  • meow13
    meow13 Member Posts: 1,363
    edited March 2016
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    farmgirl31, how big was your tumor? I can't believe grade 3 invasive triple negative cancer and no chemo advised.

  • farmgirl31
    farmgirl31 Member Posts: 3
    edited March 2016
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    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.

  • chi-girl
    chi-girl Member Posts: 1
    edited March 2016
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    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.

  • Cathytoo
    Cathytoo Member Posts: 394
    edited March 2016
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    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

  • farmgirl31
    farmgirl31 Member Posts: 3
    edited March 2016
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    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.

  • meow13
    meow13 Member Posts: 1,363
    edited March 2016
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    one thing to note triple negative risk of recurrence goes down significantly after 5 years

  • ForeverOptimistic
    ForeverOptimistic Member Posts: 4
    edited March 2016
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    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.


  • KPeace
    KPeace Member Posts: 1
    edited July 2016
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    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

  • meow13
    meow13 Member Posts: 1,363
    edited July 2016
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    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

  • JanetCO
    JanetCO Member Posts: 11
    edited July 2016
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    My tumor was 2.4 cm and I was recommended chemo for TNBC then radiation

  • Bowleranna
    Bowleranna Member Posts: 1
    edited July 2016
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    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.

  • moderators
    moderators Posts: 7,913
    edited July 2016
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    Hi Bowleranna and welcome to Breastcancer.org!

    Thanks for posting! We're sorry that you're here, but happy you found us. We know you'll find great support here.

    Please let us know if there's anything we can do to help you navigate the boards. We're all here to support you!

    --The Mods

  • Sister-Sister
    Sister-Sister Member Posts: 22
    edited October 2016
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    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

  • gymgirl1940
    gymgirl1940 Member Posts: 1
    edited November 2016
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    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.

  • meow13
    meow13 Member Posts: 1,363
    edited November 2016
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    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...


  • aterry
    aterry Member Posts: 142
    edited November 2016
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    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.

  • vlh
    vlh Member Posts: 768
    edited January 2018
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    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

  • KellyAnne13
    KellyAnne13 Member Posts: 8
    edited December 2016
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    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.

  • elainetherese
    elainetherese Member Posts: 1,625
    edited December 2016
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    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.

  • meow0369
    meow0369 Member Posts: 125
    edited December 2016
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    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.

  • lsm5253
    lsm5253 Member Posts: 1
    edited January 2017
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    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

  • meow0369
    meow0369 Member Posts: 125
    edited January 2017
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    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.

  • ChattyKat
    ChattyKat Member Posts: 1
    edited January 2017
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    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.

  • sunnyspot
    sunnyspot Member Posts: 6
    edited January 2017
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    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

  • Mdickson
    Mdickson Member Posts: 1
    edited January 2017
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    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

  • moderators
    moderators Posts: 7,913
    edited January 2017
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    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

  • moderators
    moderators Posts: 7,913
    edited January 2017
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    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

  • meow0369
    meow0369 Member Posts: 125
    edited January 2017
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    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.