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

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  • Tmh0921
    Tmh0921 Member Posts: 714
    edited May 2016

    Sunnyone22

    When I was first Dx, a coworker of mine was right there telling me that I could beat this. That it wasn't a death sentence. At the time, she was 19 years out of a Stage 2, 2 node positive, ER-/PR - diagnosis. I clung to her story during my diagnosis and treatment, as it gave me so much comfort and hope. Not long after my diagnosis she had a second primary in her other breast, this time DCIS. She's now around 35 years out from her first Dx and 16 years out from her second.

    There are a lot of long term survivors out there ((((hugs)))



  • Sunnyone22
    Sunnyone22 Member Posts: 191
    edited May 2016

    Not one but TWO long-term success stories! Thanks SO much Tmh0921. It's been a long time since all of this was 'fresh' for you but I bet you don't forget it. Now that treatment is behind me, I'm transitioning into my new normal and hoping to use this experience as an impetus for some positive health AND life changes.

  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2016

    yes, love hearing of these success stories too. Gives me hope that I may not get a recurrence.

  • TennisPink
    TennisPink Member Posts: 22
    edited June 2016

    I am stage 1 grade 2 at age 44and there will be no chemo -- Radiation and Tamoxifen for treatment.

    To boost everyone's spirits--tonight I met a 21-year survivor.


  • Momof4gramof3
    Momof4gramof3 Member Posts: 15
    edited June 2016

    I was stage 1, grade 2 with an oncotype of 18. Under those circumstances and the fact that I was 63 at diagnosis and had already had a total hysterectomy/oophorectomy, my MO was very confident that I didn't need chemo. I did the condensed, Canadian fractionation radiation schedule of 18 treatments and then started on Arimidex. Unfortunately, I didn't tolerate that AI or Femara due to joint pain and developing a trigger finger that had to be surgically corrected. I've been on Tamoxifen now for about 18 months. I worry because I know it's not as effective as an AI would be for me and the only antidepressant I can tolerate is NOT recommended with Tamox. I still worry.....
    All that being said, my mother is 94 and a 33 year survivor from back in the day when they did the mastectomy and sent you home.

  • DenvMom
    DenvMom Member Posts: 27
    edited June 2016

    I had a Stage 1a Grade 2 ILC did a double mastectomy at 65 yo.  My Oncotype was 11 and my Oncologist will not do Chemo or radiation on me, but he has me doing Anastrozole, just started this treatment. 

    My sister had a Stage IIa Ductal not sure of the grade at 33 yo and she is now 70yo!   She had NO treatment in those days or even later.  The Docs thought she would not live over a year well 37 years later she is fine with no reoccurence.  My aunts on my mom's side had BC in their 50's and all lived into their 90's none died of cancer.   My mom had Ductal at 88 she had radiation and she is now 93. 

    I just am not worried about dying but doing the Anastrozole because my doc said I should.    All of my relatives had cancer like me in the left breast and they all lived.  We did the Braca and no to that but all docs we have believe there is a genetic component because we are all left breast cancer.

    My husband had PC and the Chemo was really bad so I am glad I don't have to do that.   Hope this info helps someone.


  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited June 2016

    Generally, the higher your ER+ % the more effective endocrine therapy (AI or tamox., depending on pre-or-post-menopausal status) will be. The one caveat is if you are PR-, which tumors tend to be more aggressive. I was 75% ER+ but 97% PR+, and 10 years postmenopausal, so AIs were recommended for me. I just finished my 5th month on letrozole, and depending on formulation (Roxane is the gentlest on me, then Femara, then Teva) side effects have been no picnic but still bearable. W/in the past month I developed trigger thumb on my R (“picking” rather than “fretting”--I’m a professional guitarist) hand, which is also my dominant and LE arm. I asked my LE doc today what I should do and he said the cortisone shot should be fine and require no precautions except for a couple of days on antibiotics or even just bacitracin on the dressing. Should I need the tendon-release surgery (as I eventually did on my L, or “fretting hand” thumb in 2011 before bc), he says his LE patients do fine even on carpal tunnel surgery--which is more complex and has longer tourniquet time. I shouldn’t even need wrapping, provided my LE stays at Stage 0. The triggering is getting very painful when I first awaken, but once I’m up & about and the Celebrex kicks in, it’s painless and sometimes even goes away till the next morning.

    I get night sweats. but running the AC takes care of that. I have severe startup pain in my hip (previous injury causing bursitis & IT band syndrome) the first 20 or so steps after sitting for awhile but it quickly goes away. Insomnia? 1/4 mg. of Xanax at bedtime drops me like a plugged buffalo and I can sleep 9 or even 10 hrs. if I have no reason to get up earlier (though my usual is 7-8). I’m noticing no skin or hair changes, but it is slowing my metabolism and caused a 13-lb. weight gain. But going back on low carb made me lose 7 of those lbs.. I just joined a gym, and am determined to be 10 lbs. below my dx weight when I next see the MO in August.

  • doxie
    doxie Member Posts: 1,455
    edited June 2016

    ChiSandi,

    I had a cortisone shot, then a year later trigger thumb surgery on my BC side that already had mild breast LE. The pain and inflammation was causing my thumb to swell. After surgery the swelling slowly returned to normal.

    My doctor had done a lot of research on the safety of this for another BC patient before doing hers. Neither of us had problems with LE. That's a grand total of two, though.

    Though let me add that I am someone who scrapes and cuts her BC hand and arm often. Add cat scratches. I'm not often good at applying antibiotics after. So far I've not had problems due these. My LE is mainly truncal and flairs in the upper arm only after over use.

  • Treefrog
    Treefrog Member Posts: 1
    edited June 2016

    hi. I'm new to group. Testing to see if this post is sent

  • JuniperCat
    JuniperCat Member Posts: 658
    edited June 2016

    Treefrog, it worked

  • Momof4gramof3
    Momof4gramof3 Member Posts: 15
    edited June 2016

    ChiSandy - your words give me hope. I was 95% ER+ and 80% PR+ so perhaps having to take Tamoxifen instead of an AI will be ok.

    I had a cortisone injection in the trigger finger which totally helped for about 6 months. It came back with a vengeance, so I had to have a release, but it was on my non BC side, so I wasn't worried about that. I do have osteoarthritis and can't tolerate any NSAIDs, including aspirin. I've seen a lot on this site and others about the benefits of Turmeric, ginger and VitD, so I'm doing my research to figure out the best way to add those to my daily routine.

    The hot flashes can be so bad that if I were to take something to make me sleep through them, I'd literally soak the sheets. We have no heat in our bedroom (in Maine) and I'd still have to get out of bed and go out to the dining room where I can turn on a ceiling fan and wait for it to pass. But, I've had them for so long, (they started about 8 years before my BC diagnosis) it's just a way of life for me.

    DenvMom - Wow, what a strong family history with such positive end results! Despite growing those BC cells, there must be some very strong cancer fighting genes in there too.

  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2016

    my trigger finger is gone since I stopped AI.

  • newbcny
    newbcny Member Posts: 24
    edited June 2016

    well, I am 65...stage 1 with an oncotype of 28...while most recommend chemo, for me the benefit is in the single digits so I am refusing chemo but will do radiation and a hormone...I realize you need someone younger to answer your post and this is just a personal choice so I would check with others for sure

  • clearly44
    clearly44 Member Posts: 9
    edited June 2016

    Hi everyone,

    My oncologist said that my pathology report came back so clean that it would be overkill to run my on oncotype. He rated my cancer at 10% recurrence rate and with Arimidex 5%. He told me that the side effects of chemotherapy would out weigh the benefits.

  • doxie
    doxie Member Posts: 1,455
    edited June 2016

    If insurance covers the Oncotype, demand it if the cost is not high for you. You are a Grade 2 and this is the grade where Oncotype really helps. This doesn't cost your MO anything. What % was your ER and PR? Do you know your Ki67? If ER and PR are high and Ki67 low, your MO may be correct. Still the Oncotype score helps you make decisions down the line, such as whether or not to stay on AIs if you are having serious SEs.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited June 2016

    My MO and BS both said that they don’t order Oncotype for Stage IA grade 1 or 2 Luminal A tumors smaller than 1 cm, because the score is sure to come back low; nor for those 2 cm or larger of any grade, with LVI or a positive node because of the certainty of at least an intermediate score. Since my tumor was a 1.3 cm stage IA grade 2 Luminal A, it was in the classic “gray area” of test vs. not test, and my score came back in the low range. At my age, with my comorbidities, the chemo would have done far more damage than good. Had it remained only the 7-9 mm originally estimated on ultrasound & biopsy, the test wouldn’t have been ordered.

  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2016

    ChiSandy, my mo said if I were both pr and er positive he would not have suggested the oncodx. We were all suprised at a score of 34. I still chose no chemo even though it was recommended. So far so good almost 5 years later. I did bail out at 4 years of hormone. I feel so much better I can't go back to it.

  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited July 2016

    Hi, I was diagnosed with stage 1 IDC at 41 this year in January. 97 percent ER, 76 percent PR, HER 2 negative, grade one. Sizes differed between 8 mms and 1.3 cm. Had lumpectomy with reexcision for clear margins and 20 doses of radiation with the last 5 boosts to the tumor bed. Oncotype was 14, so no chemotherapy. I am 3 weeks post total hysterectomy, but even without ovaries, MO wants me to take 10 years of tamoxifen so I can still have some estrogen for bone and heart health. I had baseline bone density so he can keep eye on bone loss. I feel I have done all I can to prevent recurrence, but would do chemo if absolutely needed to. 0 of 3 nodes - sentinel. Positive VUS of PALB 2 genetic mutation. 6th in 3 generations on moms side with breast cancer - one, possibly 2 pancreatic cancers that are associated with palb2 mutations. Hugs to all!!

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