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Any local recurrence (within few yrs) early stage despite AI?

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happyhiker1
happyhiker1 Member Posts: 26

I am curious whether there are many local recurrences of early stage BC even though a person has followed all treatment recommendations (lumpectomy or mastectomy, and endocrine therapy (aromatase inhibitor, etc).

I opted not to do the AI as was told that rad therapy was most important and AI would only add 3% protection, in addition to my low oncotype score (10). So I wonder whether others have been hit with a local recurrence despite having taken the AI. I worried about the side effects and already was (am) marginal osteoporosis and thought I could escape a recurrence. Now will have to have mastectomy and will attempt the AI.

Comments

  • quietgirl
    quietgirl Member Posts: 165
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    From a statistical point of view there is nothing that is done surgery, radiation or AI that guarantees there won’t be a reoccurrence or Mets down the road. There is also no way to completely predict whether any single individual will be the one for whom a method works or for whom it won’t. So recommendations are based on data that has been gathered over time and in general becomes a prediction. So yes there are people who take AI who unfortunately fall on the side of it not stopping a reoccurrence and then there are people who take AI who don’t have a reoccurrence and it has nothing to do with them taking the AI. And of course people who don’t take an AI and don’t have future issues.

    So yes taking an AI for some might make it less likely they will have a reoccurrence but it is in no way a guarantee that they won’t. Even if only 3 percent end up with a reoccurrence that is still a larger group then anyone would like.

  • gb2115
    gb2115 Member Posts: 553
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    I had a recurrence after 4 years of tamoxifen. I was told low risk of recurrence, no chemo needed, etc. It grew out of the original tumor bed, so my guess, and MO agreed, is the radiation and surgery missed something, and it mutated to survive tamoxifen (estrogen receptors were slightly lower the second time around...75% instead of 100%).

    I think in some cases, you can only do what you can do, and there are no guarantees.

  • bluegirl27
    bluegirl27 Member Posts: 28
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    I had a recurrence this year after being diagnosed with DCIS in 2000. I had lumpectomy and radiation and chose not to take Tamoxifen. I was diagnosed with iDC Stage 1a, ER/PR positive and awaiting.confirmation of Her2 results via FISH testing after getting an equivocal from my SMX pathology. I just has surgery last week and doing fairly well.

  • happyhiker1
    happyhiker1 Member Posts: 26
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    Thanks for your replies! I know there is no way of knowing, but I wonder if my Covid delayed rad treatment (14 weeks after surgery, rather than 2 to 3 months) might have played a role in my local recurrence (just learned in my recurrence, fortunately, no node involvement). And I wonder, but doubt, whether institutions are keeping track of whether any Covid delays are affecting recurrences, outcomes, etc.

  • Mk2615
    Mk2615 Member Posts: 6
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    i was diagnosed with a recurrence within 3 months of completing rads. I actually was not even 1 month out from completing my Herceptin/Perjeta infusions (for HER2*), and I was actively taking AI. They are actually categorizing this as a new primary vs recurrence because it has different HR status (original cancer was triple positive, this cancer is HR-). Don’t beat yourself up for not taking the AI, because it could have come back even if you did. I hope that your surgery goes smoothly, and that you have limiter side effects from the AI.

  • happyhiker1
    happyhiker1 Member Posts: 26
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    Thanks to all for your replies. I've gotten thru' the surgery, 3 weeks ago, and recovery is slow, lots of what I guess is nerve pain from mastectomy and axillary dissection. At least nothing in nodes. But I remain intrigued how the rad missed what seems to be identical type of tumor in same place, and an additional question, why was this missed 5-6 months earlier during mammo and ultrasound. I've asked for the scan images.

  • cyathea
    cyathea Member Posts: 334
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    happyhiker1, I had progression to my spine DURING chemo. The lesion wasn’t there two months before. (They compared CT and MRI scans.). I only mention this to encourage you to try not to worry too much about whether a medical mistake was made or whether you’ll have progression as a result. Sometimes we are just unlucky and the treatment doesn’t work as well as we would like.

    Recovering from surgery can be difficult. I was not prepared for the nerve pain, shoulder issues and lymphedema. I had a year of recovery that was frustrating and annoying, but I’m doing better now. I hope you have an easier time, but if you do have some ongoing issues, know that things like lymphedema massage and physical therapy really do help. There is light in the midst of the struggle! ((Hugs)

  • jeanwash
    jeanwash Member Posts: 43
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    wondering about local reoccurrence years after mastectomy (12 years ago) and diep reconstruction (5 years ago). I was flat for 7 years before having diep reconstruction. Now 5 years later I just discovered a marble sized lump in breast towards armpit area. I will get checked out but trying to convince myself this must be lipoma or fat necrosis. No way this can be cancer in fake breast (all breast tissue was removed 12 years ago with Mx). Kind of worried… I was just getting to the point where I thought cancer was out of my life for good. Trying to stay calm..

  • jeanwash
    jeanwash Member Posts: 43
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    wondering about local reoccurrence years after mastectomy (12 years ago) and diep reconstruction (5 years ago). I was flat for 7 years before having diep reconstruction. Now 5 years later I just discovered a marble sized lump in breast towards armpit area. I will get checked out but trying to convince myself this must be lipoma or fat necrosis. No way this can be cancer in fake breast (all breast tissue was removed 12 years ago with Mx). Kind of worried… I was just getting to the point where I thought cancer was out of my life for good. Trying to stay calm…

  • mavericksmom
    mavericksmom Member Posts: 1,200
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    HappyHiker1, I too stopped taking AI after 6 months. Honestly, I was never in favor of messing with my hormones and like you, it was only helping me by 3%. Like you, I decided to go with the odds, but ended up with a new Dx.

    Had IDC in 2003, 2 lumpectomies, chemo and rads, Tamoxifen for a very brief time, ~2 weeks? Was perfectly fine until late in 2018 when I was Dx with ILC, same breast. Had mastectomy, and 6 months of IA before I quit. Not severe side effects, but decided not worth taking.

    Just Dx again, third time in the only breast I have left My former breast surgeon refused to give me a double mastectomy, said it was hospital policy not to remove a healthy breast in a BRCA neg. patient!

    I have no regrets, if I could have done something different, it would be to go somewhere else for a second opinion and getting a double mastectomy in 2019! Hindsight is always 20/20 so I just focus on the here, now and future. This time it is DCIS with microinvasion, so not too bad.

    I hope you get answers to your questions. Not sure why rads wouldn't have been effective for it, but not seeing it on a prior scan may have just been due to scaring of the area or just not big enough to be seen????

    I wish you well! My surgery won't happen until October, but I am glad because I need time to wrap my head around all this. I feel very positive, not at all fearful now, but not sure how I will be emotionally when the surgical pain sets in. I am having a mastectomy with implant reconstruction. Had DIEP last time, it's a one and done, which I knew at the time. Like everything else in life, I try to prepare as much as possible, then take it one day at a time!

  • mavericksmom
    mavericksmom Member Posts: 1,200
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    jeanwash, I hope you do well too! As for no way it is cancer in a fake breast, actually, it can be. There is no way to take all breast tissue out during a mastectomy. Some cells can't be removed. That said, I thought I had a recurrence in my "fake boob" in 2020 and it turned out to be fat necrosis. Hopefully that is all yours is.

    Stay strong and wait for answers! You are right to get it checked out!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,955
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    jeanwash,

    Unfortunately, even with a mastectomy (with or without recon), not every single cell can be removed. Although not common, you can have a local recurrence in the breast area even after a mastectomy. Again, not usual but possible.

    Whether one takes an AI or not will always boil down to a personal decision weighted heavily by your risk tolerance. Taking an AI is a tool in the arsenal but nothing will offer an iron clad guarantee against recurrence. Understanding what might or might not happen in the future and being able to accept a recurrence without regret should it occur may be helpful in your decision making process. Take care.

  • jeanwash
    jeanwash Member Posts: 43
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    thank you for encouragement, exbrnxgrl and mavericksmom. I will come back here and let you know how I make out.


    Happyhiker, I did complete 5.5 years of tamoxifen without too much difficulty. I actually wanted to stay on longer as it a was psychological crutch, I suppose. Everyone weighs things differently. I just wanted to throw everything at cancer from getgo with mx, tamoxifen and delayed reconstruction. I will let you know if this lump is reoccurrence. Good luck to you in your decision

  • jeanwash
    jeanwash Member Posts: 43
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    thank you for encouragement, exbrnxgrl and mavericksmom. I will come back here and let you know how I make out.

    Happyhiker,
    Idid complete 5.5 years of tamoxifen without too much difficulty. I actually wanted to stay on longer as it a was psychological crutch, I suppose. Everyone weighs things differently. I just wanted to throw everything at cancer from getgo with mx, tamoxifen and delayed reconstruction. I will let you know if this lump is reoccurrence. Good luck to you in your decision.

  • happyhiker1
    happyhiker1 Member Posts: 26
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    Many thanks for all your replies, sorry to hear those of you with recurrences too. I guess there is no way of predicting which of us end up in that unlucky recurrence category, but just have to deal with it. I hope the medical community accelerates research into early detection through blood tests, I recently read about this in the UK, I believe.

  • teacher30plus
    teacher30plus Member Posts: 1
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    I have just had DMX a week ago. I am still in shock that it came back almost identical to last tumor's makeup in almost the same spot. I did everything to keep it from returning, surgery, chemo, radiation, and AI for five years. I guess as soon as I stopped the Letrozole in Sept. of 21, it started growing again. Who knows?

  • vale10
    vale10 Member Posts: 3
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    Hi!

    I was diagnosed with a local recurrence in Feb 2022. Original DX in 2017 was IDC Stage 1b ER + (10%) PR- and Her2+ . Had lumpectomy, TCH, Radiation and was prescribed AI. I chose not to take the AI. When I first got the recurrence DX, I felt terrible about not taking it but my Onc made me feel better about my choice. Everyone is different and responds to treatment differently. Despite Radiation, Chemo + Herceptin my cancer my came back. My guess is it probably would have come back even if I had taken the AI, so I'm thankful that for 5 years, I didn't have to deal with potentially icky SEs from the AI.

    Having said that, cancer recurrence is scary and I have spent quite a bit of the last 7 months questioning why this happened.

    My new DX is Multifocal Invasive Ductal Carcinoma, Grade 3, Stage 1 ER+, PR+ Her2+ and Extensive DCIS, Grade 3. Luckily no node involvement. Fingers crossed my mastectomy and current treatments will do the trick. As soon as Her2 targeted therapy is done, I'll be starting AI, not looking forward to it but I'm going to do it this time.

    Take care everyone! May we all have excellent outcomes, because cancer really does suck....

  • threetree
    threetree Member Posts: 1,429
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    Vale10 - I'm no expert by any means, but it seems that if you were only 10% ER positive, it made sense to not bother with the AI. I'm real sorry to hear about your recurrence. We all just live in constant fear of it. I hope things go well for you as time moves on.

    It seems that no matter when someone stops taking the AI (or if they declined it initially), and they have a recurrence, it can always be blamed on taking the AI, either not at all or not long enough, but who would really ever know? It seems that no matter when a person stops the AI, any recurrence can be blamed on having stopped, or not started altogether, and yet that could well be a faulty assumption in many cases.

    We cancer patients just can't seem to win no matter what we do.

  • jeanwash
    jeanwash Member Posts: 43
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    Update.

    I haven’t gone in to get checked yet. But I knew if I did I would be for biopsy. So instead I decided to massage and see if it could disperse the lump (if it was fat). Initially I felt a little give which motivated me. After persistent & a lot of massaging all day, for weeks… only a tiny bit of lump remains. I suspected it may have been from fat graft with the diep. I had lumps after surgery which I managed to masssge away. I just was so surprised that this large lump showed up 5 years after diep reconstruction. I will go in for annual check next month but I am pretty sure the lump will be completely resolved with my massaging by then.


    I have to say that had I not had some experience earlier on, I would not have decided to massage first. I encourage everyone to get every lump checked.

  • edwards750
    edwards750 Member Posts: 1,568
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    My sister had a MX and the cancer came back to the MX scar. It's scary that you can do everything you are supposed to and it doesn't seem to matter. Neither wonder we all cringe when someone tells us we are cured or since you are X number of years out no worries. If only…I am 11 years out and while I am more confident I know there are no guarantees because we are never totally out of the woods unfortunately.

    Good luck!

    Diane

  • mavericksmom
    mavericksmom Member Posts: 1,200
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    I agree edwards750! As if it isn't bad enough to get false advice from friends and family, it is even worse when it comes from one's doctor!

    2003, I was told by my breast surgeon that after five years cancer free, I was as good as cured. She also told me that breast cancer doesn't present with pain.

    In 2018 when I saw my gynecologist, I mentioned the pain I felt in my treated breast. She sent me for a diagnostic mammogram and US. I actually don't think the cancer showed up on the mammogram or if it did, just hazy. The ultrasound picked it up! But, my breast surgeon wasn't totally wrong, I did not get a recurrence as the first time was IDC, second time was ILC, but she did steer me wrong about pain not being associated with breast cancer. The ILC was in the exact spot where my pain was.

    My next breast surgeon from a well-known cancer hospital refused to do a bilateral mastectomy, saying the hospital policy was not to remove a healthy breast! Talk about bad advice! Three and half years later and my healthy breast has cancer!

    Most recently, in July, I found out I have DCIS with microinvasion in my opposite breast! So yes, breast cancer is the unwanted gift that keeps on giving!

    That said, I do think most doctors try to be honest and give their best advice. Some of us, myself included, just seem to be very unlucky.

    I am two weeks away from my mastectomy and SNB and I just found out someone I work closely with just tested positive for Covid. Ugh. So far I have avoided it. I am fully vaccinated, had the latest booster two weeks prior and I mask at work, so I think I will be ok.

  • SoItGoes_KV
    SoItGoes_KV Member Posts: 2
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    Hi all, Joining in. Dx last month with recurrence. Biopsy reports same cancer as 2020 "HR+ Her2-, IDC, Grade 1" I found it as a tiny bump where a previous tumor had been, not on the scar. Awaiting conversation with breast specialist onco, PET/CT, breast MRI. Fingers crossed it is a locoregional recurrence and not metastatic. more info to come soon. I am interested in hearing what you all have to say. I will post links occasionally to scientific literature I find helpful. Happy to hear your thoughts and read incoming posts.

  • jeanwash
    jeanwash Member Posts: 43
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    Sorry to hear of reoccurences!

    I had a lump last year Aug ‘22 and managed to massage it away (seemed like fat necrosis). I missed my mammogram last year and went in last week. I mention the lump on the diep side that I had massaged away. They suggested ultrasound on that side and now recommending biopsy as the ultrasound cannot distinguish fat necrosis from cancer.

    Uhhh!! Just the thought of going through it all again…

    I think that is why I missed the annual check last year because was so sure it is fat necrosis. My mastectomy was over 13years ago and Diep reconstruction 6 years ago. Hard to even think this can possibly be a reoccurrence. But BS was transparent and told be she saw 2 reoccurences in DIEP reconstructed breasts last week.

    So off to biopsy for me.😞

  • roareus
    roareus Member Posts: 68
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    Hello,

    I am not sure what I am looking for but I am beside myself. I was dx in 2013 for ++- BC. I did chemo, radiation, and lumpectomy. 1 year of tamoxifen and medically induced menopause with Lipton and 9 years of exemestane. Two weeks ago, during my mammogram, they see a tumor and it was boosted last week. +-- IDC. I just want to crawl into a hole and not come out. Did this happen because I am fat? I pretty much stopped eating and lost ten pounds during the past two weeks. Did this happen because we stopped lupron 2-3 years ago? Why? WHY? What does the prognosis mean when the tumor is progesterone negative? Bad because it's closer to triple negative? My twins are 12. Oh God, I think about my son and he isn't going to do well with it. My 85 year old mother. How do I tell her??? Please pray for me if you pray.

  • laughinggull
    laughinggull Member Posts: 516
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    Dear roareus,

    I am very sorry that this happened to you. Nothing you did or didn't do makes you deserve this. Nothing. Statistically, some things increase your risk, some things decrease your risk, all at the population level. At the individual level, you just had bad luck. Lots of fat patients don't get a recurrence. Please don't blame yourself for this. You did everything right.

    I also have twins, they were 10 at the time of my diagnosis. My cancer had spread to my lymph nodes (palpable) and was bursting out of my lymph nodes, and I thought I would die in a few years -if lucky. I also lost a lot of weight in short order, before I even started treatment and before I got my anxiety under control. But in reality, my prognosis was not so bad. If your cancer is confined to the breast, your chances are good that you will be there for your twins. You have good reasons to have hope.

    As for your mom, I know that if I were you, I would wait to have a plan in place, maybe even to start treatment (including help with anxiety), to understand your prognosis better, and then tell her, without sugarcoating it but without despairing. I am sure she will take comfort on being there with you.

    Best wishes and take care,

    LaughingGull

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,955
    edited January 26
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    roareus,

    Although there are overarching recommendations for keeping healthy and mitigating the possibility of recurrence, none of those things are in any way a guarantee that bc will not return. While weight is something that doctors recommend we keep in the healthy range, that alone does not explain your recurrence nor likely anyone’s recurrence. I am very thin and I was stage IV de novo.
    You have asked why many times and unfortunately, there is no real answer. If oncologists knew why people recurred or if there were even a reliable method to predict who is likely to recur, medical research might well be further along in preventing recurrence! Quite simply, despite chemo, rads, Lupron, tamoxifen, AI’s or almost any other treatment available people do recur.
    Your current PR- tumor is just that. Again, there is no progression in terms of hormonal profile. More important is to look at percentages. Are you strongly PR- , Er+, etc. These are things to discuss with your oncologist. As an example I am HER2 negative technically, but there is low expression of HER2 so I am actually considered HER2 low and at some point in time this could effect my tx plan.
    Thus far you know you have what appears to be a small local (confined to breast) recurrence. I know you are worried about telling your family . However, if it’s confined to the breast, you’ ll undergo tx which may not be fun but you’ll come out on the other end. It may be difficult but don’t turn this into a catastrophe when you have no evidence of that. You are not in imminent danger of dying and cancer confined to the breast won’t kill you. You are very, very far away from leaving your children and other family members. Hopefully, you’re taking some anti-anxiety meds 😊. I have one small suggestion and that is you may want to wait until you’ve got all the info regarding your treatment and the plan going forward before you speak to some family members. That way you will be able to answer their questions and concerns with facts and stay away from speculation over things that might not ever or are unlikely to happen. Lastly, I would suggest trying to accept the fact that no one knows why, because that is the current reality. Why was I stage IV de novo when I never missed a mammo and am generally healthy and thin? Why have I survived for 12 progression free years? Again, no one knows and unfortunately despite advances in dealing with bc, there are still many unknowns.
    Take care

  • roareus
    roareus Member Posts: 68
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    Thank you . I think I may die from the anxiety and heart pounding out of my chest. I do not plan on telling my family until I have a plan and know exactly what's going on. I just recently got some anti anxiety medication and my doctor will give me some beta blockers for the heart pounding. Problem with my anti anxiety medicine is, it makes me drowsy. So I only take it at night.

    Here is a question. If my estrodial levels were less than <5pg, how did I get an estrogen positive tumor. If there was no estrogen, what fed it. I am asking because I am considering getting my ovaries removed.

    Thank you for reading. I feel better. A little bit. 😬

  • laughinggull
    laughinggull Member Posts: 516
    edited January 27
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    Your estrogen levels in your blood (which the test measures) may be different from your estrogen levels locally, in tissues that matter. That’s my understanding. Estrogen levels on blood are irrelevant. Removing your ovaries may be on the table -something to discuss with your MO. I had mine removed.

    I think the definite answer to your why question is that you had random bad luck. Just random bad luck. Like everybody here.

    Glad to hear you are getting anxiety meds. Sorry you are drowsy at night. But in a way it’s good because things often feel less scary in the morning. The heart thing sounds scary. Please be gentle to yourself. You did nothing wrong. With a bit of luck you get out of this to get to live a long happy life. We are rooting for you. Your family loves you, and they will be there for you, and they are not going anywhere. Remember you are the same person you were a month ago, and you deserve love and peace. It is super hard right now. Try to take it just one day at a time. Bask in your kids love. Try to give yourself breaks from worrying.

    Take care

    Laughing Gull

  • roareus
    roareus Member Posts: 68
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    I met with my breast surgeon today. I need to get a PET scan. If that is clear, mastectomy on one side. She told me to stop my AI because it will be switched because it didn't prevent this recurrence. Does this mean AIs stopped working on me? Do other AIs work differently? What does this mean?