Anyone who was Stage 1 Grade 2 who did not do chemo?

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4love
4love Member Posts: 13
edited July 2016 in Stage I Breast Cancer

Hi,

I'm new to this group, but wish i had come here before i started my treatment. I was diagnosed almost 2 years ago at the age of 43 and had a mastectomy. I had Stage 1 Grade 2 with the oncotype of 25. I saw 2 oncologist and they both told me that they would not recommend chemo for me because i was "young" and the side effects may out weigh the benefits. After reading many of the posts here, i'm starting to second guess my treatment plan. I have been taking Tamoxifen for about 1 1/2 now. I was wondering if anyone else with a mid range oncotype score who was also "young" chose to not take chemo and how have you been doing since. Thanks for your time...

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Comments

  • odie16
    odie16 Member Posts: 1,882
    edited June 2015

    4love, wish I didn't have to welcome you to the group. My story is similar to yours as I was diagnosed at age 40 with a Stage 1, grade 2 IDC however my oncotype was 11. I am on the 10 year plan for Tamoxifen but did not do chemo as the benefits would have been minimal. I had a double mastectomy and did not have radiation or chemo. Currently on year 4 and doing well.

    Hope this helps ease your mind some.

  • Beckers
    Beckers Member Posts: 1,883
    edited June 2015

    I was grade 2, stage 1, on other 19. Did not do chemo and only able to tolerate Tamoxifen 10 months

  • Beckers
    Beckers Member Posts: 1,883
    edited June 2015
  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2015

    My oncodx was 34 and doctor's strongly recommended chemo but I didn't do it.

  • 4love
    4love Member Posts: 13
    edited June 2015

    Thank you all for your replies. Wish none of us were on this rough ride....really get scared at times when i read what the stage 4 ladies have to share. Wish my doctor's would have told me that stage 1 can become stage 4 down the road!!! I'm sure I would have asked for chemo had i known...

  • MerrellGirl
    MerrellGirl Member Posts: 67
    edited June 2015

    4love, I know it's so difficult not to look back on our decisions, and it's also hard living with the cancer recurrence monkey lurking, but why are you reading the stage iv boards? Mental masturbation, my other bc sister says, with no orgasmic upside. I try not to do it, though I want to sometimes. I too have seen many different recurrence scenarios - some who took chemo, others who didn't.

    Please try to focus on doing those things to help prevent a recurrence: regular exercise, healthy food, limited alcohol, green tea, etc. We hate this beast. I try not to give it anymore of the life I have left. And even some stage iv women live YEARS with the beast, and they must live each day the best they can, too. Hugs to u. MerrellGirl

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited June 2015

    Your opening post did not provide as many details as you might think, so I am not sure how to comment to you. For instance, 25 is a fairly high intermediate score. Did your Doc ever run the Adjuvant Online program for you which tells how much of a benefit (in percentage) doing chemo would have given you. I know that my doctor sees the 5% risk reduction as the point in which the benefit outweighs the risk. So, I wonder what percentage of benefit chemo would have given you? For another instance, Grade 2 is weird, a grey area. You might want to look further into the pathology which could break that score down into the three component scores, most specifically mitotic (growth) rate. If you scored a "1" on that, perhaps your tumor would be too slow growing to benefit much from chemo; on the other hand, scoring a 2 or 3 on that could indicate that chemo would have greater effect. Finally, also contained somewhere on your Path. Report (or maybe the Biopsy Report) should be the percentage of ER positivity you had. If you were strongly positive, like 90-95%, then an anti-hormonal (your Tamox.) would be the drug of choice as far as adjuvant--insurance policy--treatment. I take it that you had no positive nodes. Many with early Stage, without node involvement get to skip chemo.

    What comes to my mind is that when a woman is "young", aggressive BC is more prevalent and more of their BCs are not strictly estrogen dependent. For that reason, many "young" women are candidates for chemo moreso than older women. However, if your pathology was reviewed by two doctors and they both concurred that chemo was not required for you, then don't worry too much about it.

    Check into the few things I mentioned and, as always, go back to the doctor source and simply ask WHY chemo was not considered. Just to ease your mind and gain understanding. I believe that all questions like that need answers and who cares if it is two years down the road, ask!

  • hummingbirdlover
    hummingbirdlover Member Posts: 421
    edited June 2015

    Mine was a grade 3 (upgraded after final pathology) and oncotype was 17. Chemo was not recommended for me

  • 4love
    4love Member Posts: 13
    edited July 2015

    @elimar Both oncologist's had told me that chemo would reduce my risk by 6%, but at the same time kept saying that 6% is not a huge % point and the risk factor is higher for someone who was 43. I just took a look at my pathology report and the Mitotic score is 1. The pathology report does not show the % for my ER positive, so will have to check my biopsy report. I had 0/2 nodes involved and my tumor size was 1.5cm. I think i'm gonna give my self a heart attack long before the cancer gets a chance to kill me...

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited July 2015

    Now I don't know how it applies to everyone's age, but there are women on BCO who opted to do chemo even when it just reduced their risk by 3-4%. Some just have that "throw everything at it" mentality, so when given a say in the matter, they said "yes" to everything. Most of the chemos used are effective during the phase of cell division, during the growth phase, and your tumor was not growing aggressively. I think the doctors took into account the slow rate of your cell division and just did not think chemo was the best bet.

    One thing to realize is that chemo is not better at fighting cancer than the anti-hormonal drugs (which are chemicals in their own right) is is just a different form of effectiveness and it is a matter of selecting the "right tool for the right job" in the case of our chemotherapies.

    I think that with a mastectomy, your chance of recurrence is in the ballpark of 2-5%, and rather than have a heart attack stressing that you fall into that very slim minority, try to embrace the statistical average that you are 95-98% done with BC. Ya know, someone has to be in the statistical group that "beats" breast cancer, so why not you? That's what I always tried to focus on and so far so good.

    BTW, My Oncoscore was 18 and no chemo for me.

  • Mabs
    Mabs Member Posts: 36
    edited July 2015

    I'm 36, dx last year with IDC stage I, grade II, ER/PR + and Her2 -, oncotype 11. No chemo, no rads. Currently on Zoladex and Tamoxifen, because tamoxifen caused an increase on estradiol levels. I also worry about recurrence, but I dont think I would worry less if I had done chemo...

  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2015

    It's obvious from these posts that ONCs are definitely not on the same page when it comes to treatment. I am Stage 2, Grade 1 IDC. I had a lumpectomy followed by 33 rads treatments. Currently taking Tamoxifen and 4 years out. Given I had a micromet in my SN my ONC ordered an Oncotype test. My score was 11. I can't believe some of you with higher scores didn't have chemo or rads. I'm not young so no need for aggressive treatment but still. Had my score been high I'm sure I would have had chemo.

    Diane

  • Jewel8
    Jewel8 Member Posts: 34
    edited October 2015

    I didn't do chemo even though my Oncotype was 21. My MO said there was a low percentage (below 3%) difference with chemo. I felt confident with her recommendation. My SO said 95% of her patients opted out of chemo with my scoring. I am being treated at Cedars Sinai in Beverly Hills.

  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2015

    rose - bummer. I've heard other horror stories from the effects of chemo. I did not want to do it of course but frankly would have been scared not to. However, had I read stories like yours ahead of time I might not have. Suzanne Sommers comes to mind when I think of "famous" people who opted out of chemo. She was DX in 2001 and had a lumpectomy and rads and despite her doctor's advice said no chemo. It is 2015 and NED.

    Diane

  • dianka
    dianka Member Posts: 2
    edited July 2015

    hi 4love

    i also did not go thru chemo.

    mine was stage 1 and grade 3, but the doctor did not suggest to go for chemo.

  • katcar0001
    katcar0001 Member Posts: 621
    edited July 2015

    Stage 1, grade 2 here, on the border with oncotype of 17. No chemo. My onc offered CMF if I really wanted it, but thought I'd get the most gain from Tamoxifen. He said that 80-85% of all women are cured by surgery alone, regardless of subtype and grade.

  • songbird68
    songbird68 Member Posts: 190
    edited August 2015

    Hi 4love and all.

    I couldn't just read and run.

    I'm 2 years out!!

    No chemo, no rads just mx :)

    And I had 3 IDC with a DCIS that was necrotic comedo ( I think that's the worst that in-situ gets, or something. Someone correct me if I'm wrong, I'll be happy!) They only test the largest tumor, ugh, that has gone round my mind - what if the smallest tumor was HER2+, what if it was ER- ... have I been given the right treatment. I'm gradually feeling better about it, sometimes even manage a "so what, whatever" ha.

    My surgeon and onc both said no chemo, and we had quite a long debate about it, involved second opinions. Their reasoning was good and I understood it.

    Elimar, you are so right when you say: "Ya know, someone has to be in the statistical group that "beats" breast cancer, so why not you? That's what I always tried to focus on and so far so good."

    x x

  • 614
    614 Member Posts: 851
    edited August 2015

    Stage 1a, Grade 2, pleomorphic invasive lobular carcinoma, pleomorphic lobular carcinoma in situ (2 locations in same breast), and invasive tubular carcinoma.  Oncotype 14, ER+, PR+, HER2-, Ki67 - 21%.  I had a double lumpectomy in the same breast and whole breast radiation.  No chemotherapy.  I am taking Arimidex.  I had my ovaries removed to be medically induced into menopause so that I could take the aromatase inhibitor.  I could not metabolize tamoxifen.  I was diagnosed 6/25/14.

  • HopefulJenn
    HopefulJenn Member Posts: 34
    edited August 2015

    Hi 4love,

    As you can see in my signature, I had an LX a couple months ago for a 5mm tumor of pleomorphic ILC. I'm starting rads next week and am on Tamoxifen for a minimum of 10 years. My Ki67 was 7%, so the mitotic rate of my tumor was so low (and it was so small) that chemo was not recommended for me. I had a few detailed conversations with my MO and got second opinions along the way. I wouldn't say I'm content with the decision for no chemo (I doubt many of us are content with any parts of this situation!) but it definitely makes sense in my situation. Second-guessing seems to go hand in hand with everything to do with BC but I absolutely agree with the previous posters - if it's bothering you at all, make an appt with your MO and quiz them as to their reasoning.

    Good luck!

  • 614
    614 Member Posts: 851
    edited August 2015

    Dear HopefulJenn:

    Good luck with your radiation treatments and in general.

  • 39andhip
    39andhip Member Posts: 164
    edited August 2015

    I have stage 1, grade 2 IDC with an oncotype of 13. I've seen two different MOs and neither recommended chemo for me. They said it might benefit me 1-2% but ultimately that benefit would probably not outweigh the risks. I think I tend to lean toward conservative treatment, though. I really didn't want to do chemo... I also really didn't want to have a mastectomy, but that apparently has to happen. I, too, get nervous about whether I'm doing the 'right' treatment, but I think second guessing yourself is inevitable no matter what, unfortunately. Like someone above said, if you read stories about recurrent and/or metastatic BC, it can happen regardless of whether or not one does chemo.

  • Mabs
    Mabs Member Posts: 36
    edited August 2015

    I'm courious about those who say that could not metabolize tamoxifen... I'd like to know how we know that...

    At first I was taking tamoxifen alone bit my estradiol levels went up so high that I had to add zoladex to stop my ovaries...

    Is that a sign that I can not metabolize tamoxifen?

    I'm currently on tamox + zoladex.


  • labelle
    labelle Member Posts: 721
    edited August 2015

    There is a test to see if you can metabolize tamoxifen but lots of OCs, including mine, don't/won't use it.

  • 4pink101
    4pink101 Member Posts: 45
    edited August 2015

    today is my second day on tamoxifen and I've experiencing pain around both ovaries. Has anyone else experienced this

  • 614
    614 Member Posts: 851
    edited August 2015

    Dear Mabs:

    My MO gave me a test to see whether I could metabolize tamoxifen.  The results stated that I was a poor metabolizer of tamoxifen.  That is how I know that I can't metabolize it.

    Regardless, Aromatase Inhibitors are slightly better for Invasive Lobular Carcinoma and LCIS.  That being said, there isn't that much difference between the two.  Since I was not in menopause at the time of my diagnosis, my MO would have prescribed tamixifen if I could metabolize it. 

    I started with Zoladex to suppress my ovaries and put me into menopause.  (One must be in menopause to take an aromatase inhibitor.)  However, I did not want to take an extra medicine and have the zoladex shots every month.  I had an oophorectomy to put me into menopause. It is a relief because now, I will not have to worry about ovarian cancer and I am taking one less medicine. 

    Most doctors will not do the tamoxifen test, and even if a test is done, most doctors do not place much stock in the results.  Doctors tend to feel that tamoxifen will work anyway.  I am glad that my doctor gave me the test. I would rather take a medicine that I know will work 100% for me.  Both tamoxifen and arimidex are strong medicines with potentially, a lot of side effects.  If I were taking tamoxifen, I would always be wondering if it was working.

    Good luck to everyone on this thread.

    614

  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2015

    I know my oncodx was high but I wasn't willing to risk chemo to cut my reoccurrence risk from 23% to 11.5%. If my cancer comes back I will deal with it then. Chemo is not a cure it knocks out fast growing cancer cells. But the immune system needs to to it's job.

  • 4love
    4love Member Posts: 13
    edited August 2015

    I think the biggest fear is the fear of the unknown... Meaning, not knowing what ahead for us or if we are doing everything that we need to be doing to make sure it never comes back. I hope and pray that they would hurry up in finding a cure so that we could put our minds at ease.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2015

    I was told by my surgeon (as he was reading the pathology report) prior to lumpectomy that the tumor they guessed to be 1.6 cm on ultrasound was actually 2 cm. Then as he probed a little further into the report, stated that it was actually just a little under 2 cm and classed as a T1C, stage 1, grade 2. When I questioned him about the oncodx (which I had learned about reading these forums and other sites), he said that my MO would be doing that test and that it would probably be the deciding factor in whether chemo is suggested or not. (I haven't met with MO or rads doctor yet.) He also said they used to do chemo automatically if the tumor was 2 cm or larger (I guess he told me this since mine is right on the border), but that the oncodx was more of a determination now. Now I'm am questioning if it would be productive to have chemo even if oncodx comes back low since my tumor was close to 2 cm. Any thoughts or experiences similar?

  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2015

    i don't think size is as important as the genetic makeup of the tumor these days.

  • dtad
    dtad Member Posts: 2,323
    edited September 2015

    Just wanted to let everyone know I have recently read a lot of literature that suggests there really isn't a grade 2 only 1 and 3. Anyone else?


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