Chemo or No Chemo?

12345678
12345678 Member Posts: 81
edited June 2014 in Stage III Breast Cancer

I am seriously considering NOT doing Chemo.

Here's why: ER+/PR+/HER2-, OncotypeDX Score 21 (low interm), low Ki67-1%.

Only problem is: Stage IIIC and 12 out of 12 nodes tested positive during mastectomy. 

My onc wants to start me off w/ACT (Adriamycin, Cytoxan & Taxotere). I couldn't even keep a statin down w/out a violent reaction and had motion sickness as a child.

Plus I've read articles that state that AT doesn't even work for ER+.  And I'm 62 years old.

Been taking Arimidex (anastrazole) since diagnosis last July 2011, which shrank my tumor from 4.6 to 2.5, almost in half.  

Given the side effects, and my sensitive system, I'd probably be the 1 in 100 that dies or has permanent damage from the chemotherapy.  

I'm thinking about taking my chances without it and just depending on the mastectomy and Arimidex alone.

Quality of Life is more important to me than long-term survival. 

Any comments? 

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Comments

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited March 2012

    Just curious... I thought the Oncotype DX test was for stages 1 and 2 and either node negative or few nodes. Not sure that the score you have would be valid and useful in making a decision.

  • DiDel
    DiDel Member Posts: 1,329
    edited March 2012

    Do the chemo...12 out of 12 nodes!!  I did 4 rounds of Taxotere and Cytoxan and never got sick. They give you so many anti nausea meds pre infusion. Talk to your doc about Emend and Aloxi before chemo infusion. I know its scary but the alternative is scarier.

    btw I had no node involvment and oncotyps RS of 17. My pathology on my smallest (of 4) tumors showed it was getting more aggressive as it hopped from duct to duct.

    Feel free to PM me if you have any specific questions.

    Hang in there ...it will be a distant memory before you know it.

    Diane

  • pupmom
    pupmom Member Posts: 5,068
    edited March 2012

    I was 62 at dx also, and I would have done chemo in a New York minute if my MO had recommended it. As it turned out I didn't get chemo beccause my Oncotype was 14. I am not ready to die and plan to fight like hell for at least 20 more years. Life is precious and I for one am not going to let cancer rob me of one minute more than I have to. Best wishes whatever your decision!

  • diana50
    diana50 Member Posts: 2,134
    edited March 2012

    well, the chemo is something you can do.  quality of life is important to me too; i did 6 TAC and i am 10 years out,  i believe in treatmentl chemo, rads.,.hormone treatment.  it isn;t easy but as my onc says..."it keeps you around"  your body will heal from the treatment.  that is really important to remember. 

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2012

    QOL is important, but I have the same question as voraciousreader regarding oncotype dx . The last time I looked at the Genomics web site, it said it was useful,for post-meno woman with 1-2 or 3 positive nodes. Has this changed? If oncotype is not a predictor for you would that make you view chemo differently? Yes, I know, too many questions , too many decisions.

    Caryn

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2012

    Cathy,

    Got curious and looked at the Genomics site and I stand corrected. For post meno, ER+ woman, node positive with no number specified may be candidates for the test. You have a tough decision to make and I wish you the best.

    Caryn

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited March 2012

    Wow, Stage 3c with 12 of 12 nodes.  I would do the chemo.  I am 61, still get motion sickness, am diabetic and was worried sick about the lasting side effects of chemo.  But I had to do it, I had a very aggressive cancer that was spreading like wildfire.  I got through 4 dose dense AC plus 4 Taxols with no lasting problems.  I was given Emend and Aloxi as pre-meds.  I wore a scopolamine patch for 4 days with each chemo treatment.  I took whatever pill necessary to ward off unpleasant side effects.  The only SE for which there is no treatment is hair loss.  Everything else can be managed.  I'm now 6 months post-chemo and other than my short hair, you'd never know by looking at me that I had chemo.  I feel just fine and my worst fears never materialized.  Of course, everyone is different and you might have every nasty side effect in the book.  Or, you might do really well and not suffer anything serious.  You won't know if you don't try.  You can always stop if it's unbearable.  The odds are in your favor that you'll get through chemo with little, if any, lasting problems. 

  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited March 2012

    I did taxol first and had seiours shrinkin of intermamarry know infected nodes.  From 1+cm to undetectable after 12 weeks.  So taxol (similar to taxotere) works for ER post, i am 95-98% pos depending on the test.  Also I had severe, really severe morning sickness and I am on FAC, and the first round on normal premeds sucked.  week 1 was terrible week 2 was better and week 3 I felt normal.  With round 2 they gave me EMEND, it was AMAZING.  I just felt kinda bad on week one and week 2 was great, just about to start week 3.  If you get IV emend the insurance pays for it, may don't pay fo rthe pills.  They will prolly give you WBC support shots for TAC, and I have read Claritin helps with that pain, so ask the MO about taking claritin for that and then support for the side effects from taxotere... so B vitamins, L glutamin and Acetyl L carinitine.  There is no question that it will be difficult, but its doable.  I have a 20 mo old and there are women who are actively pregnant getting chemo... YOU can do this if you choose to.  Hugs!

  • Laurie09
    Laurie09 Member Posts: 313
    edited March 2012

    I would at a minimum get a 2nd opinion before you make your decision. 

    FWIW, if I were you, I would have the chemo without a 2nd thought.  I don't think it's true that ER+ is not responsive to chemo.  I had ER + and I could feel my tumor shrink down to nothing while I was having neoadjuvant chemo.  

    I haven't had taxotere, and I understand it can be tough.  I had AC and taxol and while chemo wasn't a walk in the park, it wasn't THAT bad.  Really the side effects, while they sucked, were overall tolerable.  

    I'd be cautious about making your decisoin based on your own research.  I'd get a 2nd and even a 3rd opinion, ask as many questions as you need, and then make a decision.   

  • caaclark
    caaclark Member Posts: 936
    edited March 2012

    I say do the chemo.  I get motion sick too.  Also I am one of those people who seems to get the rare but serious side effects from other drugs.  I was not sick one day while on chemo.  I felt sort of yucky but as long as I took the anti nausea drugs I was good.  In fact, there was not one day that I could not get up, take a shower and function somewhat normally. I joke with my husband that the year I had chemo was my healthiest year-never had a cold or virus like most years.  Even when my entire family was sick I stayed healthy.

    I remember not wanting to do chemo too.  No one really wants to have chemo.  It is overwhelming to think about it but for me it was not nearly as bad as I had thought.  You are only 62-that's not that old. 

  • Ihopeg
    Ihopeg Member Posts: 399
    edited March 2012

    Hi. I would do the chemo. My thought is to throw everything possible at this beast! I am allergic to many meds and also get motion sickness easily. You will get through it. I had TAC together, and only 2 of the 6 infusions did I feel like not getting off the couch. I'm five years out, and would do it again if I had to..

  • Elizabeth1959
    Elizabeth1959 Member Posts: 346
    edited March 2012

    My guess is that death from breast cancer is more miserable than months of chemo. If I progress to stage IV, I want to know I did everything I could to prevent it.

  • lkc
    lkc Member Posts: 1,203
    edited March 2012

    Hi Dear, I hear you, but I beleive you should seriously reconsider. Chemo is by no means a picnic, however, metatstatic Breast Cancer is forever unitil we pass away.

     There is NO going back.

    I had 12 positive nodes too. There is never any guarantee  that doing chemo will work, however it's your best shot. Think about it.  You are still relatively young and have a good chance at living beyond this Cr*P

  • krcll
    krcll Member Posts: 343
    edited March 2012

    I'm with the others on this- do the chemo. I'm thinking QOL is not going to be any better if you are stage IV.... During my treatment, I was afraid of almost everything that I had to go through and every single treatment (surgery, chemo, rads, AIs) was more tolerable than I feared. When my onc asked if I got motion sickness easily, I told him I get nauseous just LOOKING at a boat... He let me have the Emend right from the start. I only threw up once and the nausea I experienced wasn't any worse than I have had on boats- not fun but doable. 

    I also think that when we have a bunch of positive nodes, it shows that our cancer knows how to travel and that giving it a one-two systemic punch  (with AIs and chemo) is the way to go. You just don't which one  will work best for you.

    Good luck on your decision!

  • Omaz
    Omaz Member Posts: 5,497
    edited March 2012

    Something about your tumor made it able to travel to the lymph nodes.  That is unsettling.  I agree that a second opinion would be worthwhile. Remember that if you start chemo you can have a dose reduction or can stop if it gets intolerable. Best wishes to you, it's tough.

  • Momine
    Momine Member Posts: 7,859
    edited March 2012

    I would do the chemo. I am the bigest whimp on earth and have needle phobia, doctor phobia, IV phobia, get car sick etc.



    I managed eight chemo TXs and never puked, never had a serious problem of any kind. I did have all kinds of annoying SEs, I did freak a few times and certainly it was not the funnest thing I ever did, but it was also nowehere near as bad as I had feared it would be.

  • etherize
    etherize Member Posts: 423
    edited March 2012

    What about CMF instead of the regimen proposed?  That's what I'm on, for different reasons. Apparently it's 2/3 as effective, but has only 1/3 of the side effects.  And you don't lose your hair. ;) 

    Even though it's not as powerful as ACT, it's much better than doing nothing, imho.

  • mamabee
    mamabee Member Posts: 546
    edited March 2012

    I'm about to have my last of 6 infusions of ACT (or TAC) chemo on Wed. I'm having my chemo before surgery so we can see how it's working. I had a Mammaprint test before my chemo which said that my tumor is low risk - because of that it wasn't supposed to respond that well. But guess what? my 3+ cm tumor has shrunk to almost nothingness and my palpable node is no longer palpable. I've had a great response to chemo with a low risk, ER+, grade 2 cancer so it can happen. 

     Chemo really isn't so bad. I'm very sensitive to medications and allergic to most antibiotics, but I haven't had much trouble. Days 3, 4 & 5 I feel a bit tired, my taste buds are knocked out for about a week, and I have to watch my diet to prevent constipation, but by the second week, I'm pretty much back to normal.

     I'm doing everything possible to fight this crap - chemo, mastectomy, radiation - because if, heaven forbid, it does come back, I want to be able to say that I tried everything I could. As my oncologist said, you only get one shot at this, so make sure it's your best. 

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited March 2012

    I can't wrap my brain around an Oncotype DX test being done on a Stage 3 tumor with 12 of 12 nodes positive. And then a "low" intermediate score with a KI 67 score of only 1?? This is really a very remarkable situation. Honestly, I wouldn't know what to think. I'm not even sure I believe in the validity of the Oncotype DX test any more..... This situation makes me pause and wonder.

  • pupmom
    pupmom Member Posts: 5,068
    edited March 2012

    So many things don't make sense about this, but I totally trust the Oncotype test. 

  • Omaz
    Omaz Member Posts: 5,497
    edited March 2012

    Does it make a difference if it is ILC rather than IDC for the oncotype test?

  • SharonMH
    SharonMH Member Posts: 353
    edited March 2012

    Hi,  I just wanted to chime in and say that Chemo was very doable. I was never sick once. I wish you the best in what you decide to do. SharonH

  • faithfulheart
    faithfulheart Member Posts: 544
    edited March 2012

    I don't know if you have children............... but, if you do, please do the chemo for sure!!!!!!!

    I won't lie, it's not a walk the park. However, I have friends in stage IV, that is a place you don't want to be............God bless you in your decesion!!!!!!

    Prayers and hugss

  • 12345678
    12345678 Member Posts: 81
    edited April 2012

    Dear Friends,



    Thank you so much for your replies, interest and encouragement!



    To answer some of your questions, I was part of an Arimidex clinical trial last July to try and shrink the size of the tumor prior to surgery. It shrunk from almost 5cm down to 2.5. I had a sentinel node biopsy of 2/2 nodes removed testing positive. They still did the OncotypeDx test at that time giving me the low score. The onc even said at that time that he would have no problem with me passing on the chemo based on that score. They even did all the scans that shows no evidence of mets. Then at the time of mastectomy, he removed 10 more of the attached axillary nodes testing positive to everyone's surprise. That's what changed everything re: chemo. I'm still thinking "no" based on that score. Has anyone out there passed on chemo at my stage?

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited March 2012

    Thanks for the clarification. I would be dismissive of the Oncotype DX score because you have ILC. ILC and my type of BC, while classified as an IDC, are both rare. Therefore, the Oncotype DX test is not as STRONGLY validated as it would be for the more traditional IDC.



    Therefore, I would agree with your doctor and do the chemo. I would also follow up with the Oncotype DX folks and ask for further evaluation of your tumor. I read that most Stage 3 tumors do not get evaluated for the Oncotype DX test. Maybe they could explain further why you got a low score... Which is contraindacated with so many positive nodes.





    Good luck!

  • TectonicShift
    TectonicShift Member Posts: 752
    edited November 2018

    I tried to get my onc to do the Oncotype. He said there's no point because Oncotype and node involvement are different, separate and independent prognosticators. According to him a low Oncotype score doesn't mean much if the cancer is already in the nodes.

    Chemo is not like it used to be. You don't feel too well but it is doable. I spent most of the time on the couch but it was okay. Did not get sick once with the good antinausea meds. With grade 2 BC you have a good chance of it killing any stray cancer cells. (On average it's most effective on grade 3, least effective on grade 1.)

  • 12345678
    12345678 Member Posts: 81
    edited April 2012

    Thanks again. Sisters! I see I should clarify something else again to confirm your thinking is on the right track with my diagnosis. I was originally diagnosed as a Stage II and had the OncotyopeDx test while in that stage last summer with only 2 nodes. The trial ended in December wherein I had the SNB. It wasn't until the end of January that I had the mastectomy with axillary dissection. Then it was mid-February at the post-op meeting hat I learned I had the 12/12 nodes, which as you are all correctly saying somewhat invalidated the ODx test results. I was still curious as follow-up tests showed no mets and I wasn't sure how the biology of my tumor could be invalidated by a few more nodes. Since I appear to be on the precipice of going either way with this, just wanted to know if anyone out here refused chemo at my stage and still survived 5+ years. I cannot thank you all enough for your input. God bless!

  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited March 2012

    I understand what you are asking.  Not if you should buf if anyone else has not done chemo at stage 111 :)  I would say (based on the responses) most of us stage IIIers here have done the chemo... but if you repost this in the alternatives forums, there might be others there who have forgone chemo.  Some people hop forums and some stick to one area... it might be worth a try!  Or perhaps editing your title to say something like:  Any stage 3 survivors without chemo?  Donno, just trying to help.  :)

  • 12345678
    12345678 Member Posts: 81
    edited April 2012

    I think you are right. I'm new to this, so I will try another section. Thank you and thanks to all of you wonderful, courageous women! God bless!

  • epgnyc
    epgnyc Member Posts: 101
    edited March 2012

    Hi, Kathy.

    My diagnosis was dissimilar to yours in that I was Stage II with no nodes, but mine was Triple Negative which is very aggressive.  I did AC + T dose dense.  I'm responding to your remark that you have a very sensitive system and are afraid that chemo will be intolerable.

    I can definitely relate to your concerns.  In general I'm extremely sensitive to medications of any sort and always end up taking the lowest therapeutic dosage because my body reacts so intensely, if I can take it at all.

    This most recent bout with BC was my 2nd and on the first go-round with a less toxic chemo in 2002 (CMF), I had bad side effects so was very nervous about going through it again with more aggressive treatment.  My oncologist describes my system as being almost allergic to chemo because of how negatively I am affected by SE.  On the sheet of "possible" side effects they give you at the oncologist's office, I ended up with about 90% of them!   However, while most side effects are temporary, advancing to Stage IV is permanent.

    I finished chemo last August and am feeling really well now.  The side effects are a thing of the past and I can take comfort in knowing that I did everything possible to treat my cancer.  Despite a 4-day hospital stay after my 1st chemo treatment and a reduction in the dose I was receiving for the duration, rashes that threatened to stop the treatments with Taxol altogether, 4 emergency room visits, constant nausea and a resulting loss of 30+ lbs. (not altogether a bad thing in my case) despite the best anti-nausea meds on the market, I got through everything and even continued to work throughout (except for that hospitalization and the days I had my chemo infusions).  I'm not trying to scare you with this list of chemo woes.  I just want to let you know that another woman with a very delicate system was able to successfully complete chemo.

    Honestly, if I were you I'd have the chemo.  It wasn't pretty but it was only 4 months out of my life and I hope to live a very long one.  Good luck making your decision.  I know it's not easy.

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