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Stage 1-Should I worry about recurrence???

tami48 Member Posts: 270

I had bi-lateral mastectomy and Ooph this year.  My Onco says I'm at low risk for cancer recurrence.  I just keep wondering if I really need to be on Arimidex since I'm low risk.  From my understanding they put you on an AI if your tumor is over 1.0, mine was only 1.5.  

I was told that by getting the bm and ooph that I lowered my chances of a recurrence by over 90%.  Sounds pretty good to me.  I'm also BRCA2+.

Has any other Stage 1, Grade 2 ladies had a recurrence that had bi-lateral mastectomy & ooph?  I do worry that my cancer could come back, so I'm asking questions and surfing the internet.

I may sound stupid, but I just wonder......



  • AnnNYC
    AnnNYC Member Posts: 236


    The first thought that is popping into my head is "You should take the Arimidex and not worry." 

    I had a tumor of 1 cm (stage 1, grade 2, BRCA-negative) and I am taking Aromasin.  I haven't heard of tumor size being a consideration one way or the other, with taking of tamoxifen, Arimidex, etc. 

    Tumor size is a consideration in deciding whether to do chemo.  I'm wondering if, when your onc said you were at low risk for recurrence, he/she was talking about it in terms of not recommending chemo?  Did they do an Oncotype Dx test on your tumor, which came back "low risk of recurrence"?  If so, that score ASSUMES you will be taking an anti-estrogen treatment like tamoxifen or arimidex -- I think the "low risk" category is based on studies of recurrence in women with ER+ tumors who took tamoxifen, but not chemo.

  • tami48
    tami48 Member Posts: 270


    My Onco told me that if my tumor had been less than 1 cm that I wouldn't have to take Arimidex. 

    My Oncotype Dx score was 13 (low risk).  I just got out my copy of the test results and I do see where it says "Average rate of distant recurrence at 10 years after 5 years of Tamoxifen treatment".  Thanks! 

    I know I should just take the Arimidex and not worry.  

  • AnnNYC
    AnnNYC Member Posts: 236

    Hi Tami,

    I was curious about this tumor size thing, and I looked up the National Comprehensive Cancer Network (NCCN) guidelines for breast cancer.  They said "when the tumor is 0.6 to 1 cm, and moderately [grade 2] or poorly [grade 3] differentiated... hormone therapy with or without chemotherapy is given if the tumor is hormone receptor-positive."

    [They said the same thing for a tumor 1 to 2 cm with no spread to the nodes.]

    I hope the Arimidex isn't too hard on you in terms of side effects -- I've been on Aromasin for a year now, and the last 6 months have felt a lot better than the first 6!

    Wishing you the best,


  • Dejaboo
    Dejaboo Member Posts: 761

    Hi Ann & Tami

    Sorry to bud in here tami...I have a Question for you Ann.

    You said you found this:

    "I was curious about this tumor size thing, and I looked up the National Comprehensive Cancer Network (NCCN) guidelines for breast cancer.  They said "when the tumor is 0.6 to 1 cm, and moderately [grade 2] or poorly [grade 3] differentiated... hormone therapy with or without chemotherapy is given if the tumor is hormone receptor-positive."

    Can I ask  what the NCCN recommended for 1cm or less tumors that are grade I?



  • AnnNYC
    AnnNYC Member Posts: 236

    Pam, believe it or not, it looks like they put that in TWO DIFFERENT decision trees!!!  So, I guess it's a judgment call?

    In one place it says:

    Tumor 0.6-1 mm, hormone receptor-positive, no lymph node spread: Adjuvant hormone therapy, with or without chemotherapy, with or without ovarian ablation if premenopausal. (Doesn't say anything about grade/differentiation)

    In another place, it says: Tumor 0.5 cm or less, or 0.6 - 1mm and well-differentiated, no lymph node spread: No adjuvant therapy.

    So -- this is either a proofreading lapse on their part, or a reflection of how much this is a judgment call on the part of patient and doctor....

  • Dejaboo
    Dejaboo Member Posts: 761

    Thank you Ann.

    I just went to look at how they typed it & It is confusing.  I think they maybe made a Typo on the bottom flow chart arrow?  

    As the 1st Part says grade I .6-1cm No Node- No No Adjuvant Therapy.   Meanign No Chemo & No Hormone Therapy.  Is that how you interpret it?

    For others wanting to look.

    We are discussing Page 56/57 of this link: Breast Guidelines.pdf


  • roseg
    roseg Member Posts: 15

    You should worry a little bit.

    You've done the right thing by trying the hormonal. My feeling is that if you turn out to hate the hormonal more than you are afraid of cancer returning then not taking the hormonal is a valid choice. If you don't take the hormonal and your cancer returns you have to have decided that you'll accept that.

    You can't hate the hormonal just because you don't like taking a pill or you worry that it may cause side-effects. Something actually has to happen side-effect-wise before you're allowed to hate the hormonal.  Plus you have to make a genuine effort to work with any side effects to minimize them.  That might include exercise, over-the-counter pain relief, weight loss to counter joint problems.  If vaginal dryness is a concern then you have to try a lubricant or consult with your GYN. 

    Everybody has different worries. You have to balance them out. 

  • tami48
    tami48 Member Posts: 270

    I sometimes feel that I don't word things correctly.  I have so many questions, so many things I wonder and worry about.  I do talk to my Onco, but there is always some questions I forget to ask her.  She feels I should be on Arimidex and I trust her judgement.  It's me I don't trust sometimes because here I am trying to justify why I shouldn't take Arimidex by saying I'm low risk, I've had a bi-lateral, an ooph, etc.  I also tell myself that I'm on so much seizure medication that I just can't handle another one.  I now realize it's just pitiful excuses. 

    I want to stay cancer-free no matter what it takes.  I just get a little sidetracked sometimes. 

    Thanks for listening 

  • nichola
    nichola Member Posts: 2

    Hi Tami

    I had a stage 1 grade Stage 1 DX and was told I only had a 5 or 6% chance of recurrence and as such declined tamoxifen.  I noticed a rice sized lump in the skin of my reconstruction about 9 months later, but the biopsy came back as a hair follicle:  3 years after my initial DX the rice sized lump had grown and was joined by a couple of others...Yep a skin recurrence...stage 3b!

    My onc said that I might not have recurred if I had taken tamoxifen... Keep on the Arimidex!


  • tami48
    tami48 Member Posts: 270


    Thanks so much for replying.  I was curious about low recurrence and taking Arimidex. 
    After reading your post I will definitely stay on Arimidex and won't question it again!

    I'm sorry that your cancer recurred and hope that things are going well.  Keep us informed as to how your doing.

    Wishing you the best.  Your in my thoughts. 

  • Jenniferz
    Jenniferz Member Posts: 25


    My tumors were both under a millimeter, and even when the size was added, it came to under a mm. My first onc. wasn't going to put me on an AI, but then decided to go ahead and do it anyway.  The second onc. said she would have put me on Tamoxifin (am postmeopausal) because of my bones.  HOWEVER, I go back to her in a couple of weeks, and will argue with her again about staying on Femara unless the osteopenia is much worse.  I am triple positive, no chemo, no rads, no Herceptin either.


  • mimi1030
    mimi1030 Member Posts: 3

    My mom was Stage 1, Grade 1, IDC 4mm, Her2+++ (yes her pathology was rechecked and rechecked for the Grade 1 and Her2 status, it was correct, rare but not impossible) Mastectomy, SNB negative, 4 rounds A/C, Herceptin not availalble for early stagers in 2004.  She is ER/PR - cancer free 3 years, Sept 07 dx mets to liver and bones.  How did that happen? We have no idea, guessing there must have been some vascular invasion just didn't know about it then.

    Stay on what you are on, there is a reason the doc did that.  I only wish my mom had been able to get Herceptin in 04. 

    Hugs, Michelle

  • gk2bc0
    gk2bc0 Member Posts: 18

    HI. I would go with the hormone therapy. I had a first dx in 2005, 7mm tumor, lumpectomy, radiation, then tamoxifen.  Should have been done. Herceptin was only being discussed for early breast cancers like mine back then.  So, fast forward three years and i have anothe IDC dx, 1.2cm tumor in the scar bed, mastectomy, tram recon, and now chemo with TCH.  I'm where i would have been three years ago if  i had the option to take herceptin.  The hormonal therapies can only help. I would do it if you have a good chance of success.  Good luck! 

  • pattierpm
    pattierpm Member Posts: 1

    Sorry but what is ooph?  I am new and did not understand that abbreviation.

    I am faced with a lumpectomy and possible mastectomy if second site they found with MRI is invasive.  Wondering if I would go with the mastectomy and not have to worry about recurrences.  You said you had a mastectomy and are worried about it returning.  If you had the breast removed how could it return?  Sorry if this is a stupid question.

  • tami48
    tami48 Member Posts: 270

    An ooph is short for oophorectomy (removal of ovaries).  I actually had a bi-lateral salpingo oophorectomy (BSO)--which is when both ovaries and tubes are removed. 

    I had a bilateral mastectomy.  They are not able to remove all of your breast tissue, a very small amount is left behind. Although, they do try to get all that they can.  Talk to your breast surgeon about it, mine was very good at explaining everything.  

    I think I'll always worry that cancer will return, but that's just me.

    I'm usually not good at explaining things and I'm sure you will hear from other ladies.

    Sorry you have to be here, but know that there are some wonderful women on this board to talk to!  And  by the way----there are no stupid questions.  

  • KC1
    KC1 Member Posts: 3

    I've taken Aromasin since last Oct. My tumor was 1.5 cm and by the Grace of God, it had NOT spread.   The side effects for me have increased dramatically over the months including CTS.  I want to do everything possible to prevent the cancer from returning, however; this stuff is disabling me.  I see my Onc. 8/29.  Arimidex is next but it is only going to have the same s/e if not more so.  Something has got to give here.......  and yes, we will always worry.

  • pod1257
    pod1257 Member Posts: 8


    My dx is similar to yours. I am stage 1, grade 2, 1.5cm, ER+/PR+/HER2-  with an oncotype score of 10, considered low risk. Like you I had bilateral mast and an ooph and take Femara now.We have a family hx with my mom 28yrs out, maternal grandma and aunt, 8yrs out. Tested negative for the BRCA genes.

    I am 2 years out since June 08. So far so good. I took tamoxafin for 1.5yrs and have been on Femara since Feb. 08 when I had the ooph. So far I only am a little achey on the Femara. Hope my bones hold up.

    To me Femara is just insurance. Don't like taking another pill but figure I only have to take it about another 3yrs. Want to know I did everything I could with no regrets, should I have a recurrance. Most days I feel very hopeful that I will be OK, but I guess it is just a waiting game for all of us.

    Best wishes,


  • shepherdess
    shepherdess Member Posts: 3


    My DX is similar to yours. I'm 52, diagnosed in 12/08. I had lumpectomy and radiation (the short course--15 instead of 30)  My oncotypre score was 24...a little too in the middle for comfort, but my onc felt my tumor was small and didn't recommend chemo but did recommend Arimidex (I'm post menepausal). I have never taken drugs so hated the idea of Arimidex for 5 years. I have been on it since May and have had NO side effects. I take Calcium and 1000 units of vitamin D. Since I have no side effects I will take this damn drug as long as I have to. I would recommend you stick with it if it's not too hard on you.

    I wish you perfect health!


  • tami48
    tami48 Member Posts: 270

    I saw my Onc today.  She told me to go off Arimidex for a couple of weeks and see if my side effects go away.  I've asked her about Tamoxifen, she did a blood test for CYP2DT so that should tell me if I can take it.

    I will go on something, whether it's another AI or Tamoxifen. 


  • victrola
    victrola Member Posts: 2

    I am freaking out. I'm stage 1A, had bilateral mastectomy and am coming up on my 6th and last chemo (tamoxofan and carboplatin) as well as herceptin, which I'll be continuing for a further year. I was all set to think i'm good to go and I saw a documentary called 'Christina' . She had 7 rounds of chemo, her hair grew back and she was diagnosed with breast cancer in her liver and was dead 5 months later. My dr said i have a %95 chance of no recurrence but now I don't believe it and I'm worried about it spreading even though I did everything but radiation. What kind of screening can we do after we're 'cleared' and finished with treatment? Am I freaking out over nothing?

  • farmerlucy
    farmerlucy Member Posts: 596

    I think we all worry about the recurrence, especially at the end of active treatment. I sure did. I made myself sick with worry. The only thing that helped was the passage of time. That fear has been compared to an imaginary thing we here call "Breast Cancer Radio". In the beginning it blares really loud in our head 24/7. As time goes on it still plays, but we learn to live with it, and the fear lessens. It blends in with our daily lives. We never forget about it, but life takes over and we move forward. You'll get there. It just takes time. How much time? As my counselor said, "As long as it takes."

    Just take it step by step, day by day. My PCP ordered me to take klonopin for a year. When that year was up, my anxiety was much improved and I weaned off with no problem. Gentle hug to you.

  • Lucy55
    Lucy55 Member Posts: 2,703

    Farmerlucy ...A great post ..You have summed it up perfectly..

  • edwards750
    edwards750 Member Posts: 1,568

    I think we all fear the dreaded recurrence. I am 5 years out last August. I had IDC, Stage 1b, Grade 1. I don't know why I always feel compelled to post my particular BC because there are no guarantees early stage or not, however, I am more optimistic because of the Oncotype test. My score was low and my chances of a recurrence is 8%. Again no guarantees and I will certainly go into panic mode come May when it's time for my annual mammo but farmer Lucy is right you are less anxious over time.

  • victrola
    victrola Member Posts: 2

    I finished chemo and have been doing herceptin every three weeks and now my oncologist wants me on tamoxifen.

    I am so depressed I can't function. I tried wellbutrin which worked before until it didn't and now it doesn't work at all.

    I put on weight since chemo even though i stopped drinking, smoking and eating 4-6 times a day.

    I have drains in since i just did my final reconstructive surgery last monday and those are miserable and won't come out for another week or two.

    I can't really go to the gym unti lthey're out and surgery is healed more.

    But the tamoxifen is really crushing what little hope I had of getting my body and life back.

    I am reading everything on these boards about people on tamoxifen and it's only making me not want to take it more.

    I'm one of those people who has the wierdest rarest side effects of whatever is given to me. I had a drug for migraine prevention which made me into a zombie and it made me yawn every waking moment of the day.

    The oncologist said the only anti depressant he could recommend that would interract well with Tamoxifen is Effexor. Made me more upset to find that the worst symptoms of the tamoxifen are also shared with Effexor. No one hates me more than I hate myself. I thought getting out of chemo and last surgery would mean i could get my life back but i'm just fat and ugly and bald with dry skin and more wrinkles and now I'm going to get fatter, more depressed, have drier skin, worse hot flashes and so on. I just want to go to bed and not wake up ever again. I'm told it's russian roulette to refuse it. An RN told me i could get a regular shot and have ovaries removed but the oncologist never brought that to my attention. I also have roseacea and seborrhea dermatitis and tinnitus, which will likely be exacerbated by Tamoxifen and Effexor. Also my husband barely wanted anything to do with me before cancer and now i haven't been touched aside from limp hugs since my surgery (bilateral mastectomy) on Sept 30 2016. Now what is left of my sexuality will be robbed too.

    I feel like the only reason I dont have the right to pill shop and OD is because i have 3 kids who would be ruined if I died. But this is not living. This is so sad, lonely and so over. I will stay alive to never be kissed or made out with or have sex? Live so i can be fatter and my once amazing skin will look ten-15 years older than it is? So my already thin hair can be thinner and fall out? So i can have ugly rashes and even more itchiness? So the tinnitus in my ears can go from a high pitched constant noise to full blown scrambled radio sounds again all the time? So my jaw can rot from lack of blood supply? I do not feel like a survivor. And whenver I tell someone how i feel all i hear is that i'm being a negative victim who should be leaving the emotional doors open and accepting light and love. It also should be noted i have only one living relative who can't help or support me and zero girlfriends i love and trust in this state. Strangers have been kinder to me than the people I've called 'friend' in the ten years i've moved back to my hometown area.

    So on top of officially becoming older, fatter, uglier, invisible, uncomfortable, depressed, stressed, panicky, itchy, rashy, tired, etc. ,.I'm also alone almost all of the time and my profession is so dense with competition (Photographer) that when someone's friend, sibling or cousin gets a camera I lose all of their biz and potential referrals.

    I feel like the universe is torturing me into thinking i have a shot at my dreams and happiness and then drags it out just long enough to drop more darkness and inevitable fate on me. I feel doomed.

  • lisey
    lisey Member Posts: 300


    I'm on Tamoxifen.. absolutely no side effects. The majority of women don't have side effects, you just hear from the smaller amount that do on these boards mainly. I don't have any other advice for the other things, but I would strongly consider Tamoxifen over getting an OOPH/AI. Tamoxifen is much milder than true menopause - and that's what you'd have if you got an OOPH.

  • farmerlucy
    farmerlucy Member Posts: 596

    Dear victrola - First big hugs to you. Huge hugs to you. Did you know that we are at risk of PTSD, especially after active treatment end? You are in the perfect sweet spot for developing it. Five year ago I was there. I understand asking - no begging - God to "take" you in your sleep. That darkness is so overwhelming you can't see any way out.

    Do you have a good primary care physician? I would suggest an appointment - he/ she may have more tools to help you with this depression. Mine put me on anxiety meds and an antidepressant. I found someone to talk to weekly through the Stephen Ministry at a localchurch. Or perhaps you have access to a psychologist who could walk with you through this. Is there a support group through your hospital?

    I wandered in the darkness about five months, it was a very tough time. Pulling oneself out is about the hardest thing you can do. But you have three perfect reasons to keep on keeping on. Hang on to those babies - they're going to help you with this. And I bet your DH wants to help, but has no clue how.

    I have been on Effexor for four years now - I really like it. Tamoxifen is not a picnic but doable.

    Take things step by step. You can only do what you can do.

  • annwill64
    annwill64 Member Posts: 3

    I am just starting on this journey, I have my appointment with the oncologist Oct. 2, they will be setting up the radiation and then after that I will go on Arimidex . I read the side effects that most women were having and their reviews, it was so discouraging!! Only 2 women said they were o.k with being on this pill. Almost all talked about quality of life and they felt very discouraged and sick. I know I haven't even started it but I am wondering is this over kill, I had stage 1, negative in 5 lymph nodes. Invasive tumor was small. This is so hard to wade through all these decisions. Is there anyone who is on this pill and has minimal side effects and feels normal??

  • pupmom
    pupmom Member Posts: 1,032

    Annwill64, I've been on tamoxifen for the last almost 2 years, and aside from a, now, occasional hot flash I feel completely normal. Most women don't have severe SEs, but they don't post on message boards. The few who have problems post to get support. Best wishes!

    Edited to add: Previous to tam, I was on Aromasin for 4 years. My ONC switched me because of a SE, which turned out not to be related to the drug. Looooong story. Anyway, I have been ok on both drugs. I am currently doing the 10 year plan. Four more to go, and I can easily handle that. If, at that point, research says we should be on these meds even longer, I will do it.

  • annwill64
    annwill64 Member Posts: 3

    Thank you Pupmom,

    I have had aunts who are on Tamoxifen, and they have done well. I have not heard much about Amiridex except for this board and it does not sound good. Will have to find out why Tamoxifen is not an option for me. Thanks for your response!!

  • letsgogolf
    letsgogolf Member Posts: 65

    annwill64 I am on Arimidex and have absolutely no side effects. My sister has been on it for 2 1/2 years with no side effects. I don't think this is unusual.