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Anyone had reoccurance aftering opting out of taking tamoxofin?

I was diagnosed April 2015 at age 27 after having an excisional biop, from mammogram and ultrasound doctors were confident it was a benign fibroadneoma, turns out it was not. I had ~2.5cm DCIS tumor and <1.0mm invasive tumors scattered throughout, Stage 1. I had a unilateral mastectomy June 2015. Due to the the small nature of my invasive component and the fortunate event that it has not spread to my lymph nodes I was told Chemo was not suggested nor radiation. My ONC did really recommend tamoxofin. I have not started taking it, and I really don't want to. My doctors have strongly suggested that my long use of birth control was the contributing factor to my cancer, due to having a higher hormonal receptive cancer. I am never allowed to take it again and that is fine by me.

I am looking to see if anyone out there has a similar situation( or knows anyone) and decided not to take the tamoxofin and had a re-occurrence in the other breast or anywhere else. I am very stuck on what to do, my ONC gave me all the stats and there is just such a small % that it will help me, lowers my chances of re-occurrence <4%, which is still 4% but as what compromise to my quality of life. I am so young and to take tamx for 5-10 years and then stop......I am terrified of what this will do to my body. I feel like the tamx will just suppress the cancer and once I stop taking it I am going to be at risk for occurrence again.

Anyone out there know what I am feeling and talking about?

Thank you!

Comments

  • april485
    april485 Member Posts: 1,983

    Hi youngsurvivor. Unfortunately, I don't know the stats but I do know that due to your young age at diagnosis, doctors would not likely want you to opt out of tamoxifen since it is the only thing you will be doing to prevent recurrence. Despite what you might have read/heard, many women do very well on this drug and have minimal to no side effects. If I were you, I would at the very least consider trying the drug for a little while before deciding to not take it. Since you are so young, I know your doctors would hope that you can keep cancer from coming back for the rest of your life and tamoxifen is a very big reason so many women (and some men) stay cancer free. Whatever you decide, I wish you great health in the future but if I were you, I would most definitely try it for a few months. You could always opt out if you have problems!

  • Unbreakable01
    Unbreakable01 Member Posts: 54

    I was diagnosed with stage 2 invasive mucinous. No chemo or rads for me, and I was 34, so slightly older. I started tamoxifen 3 months ago and was worried about the side effects. The side effect for me was insomnia, but I also had stress at work. The stress is gone and I'm able to sleep. Everybody is different so I'd say try it. Everything is a gamble with cancer, it's what risk are you willing to take?

    I want to minimize my risk of recurrence.

  • Annette47
    Annette47 Member Posts: 108

    I really haven’t had any problems with it, and like April, would suggest at least giving it a try. Anecdotally, according to my oncologist, it seems as if people who are further from menopause tend to have fewer issues with the drug than those who are perimenopausal when they start on it, so hopefully that would hold true for you.

  • CCCDDD
    CCCDDD Member Posts: 1

    First, I'm so sorry you are dealing with this. I was 34 and also took birth control pills from the time I was 16 on. Er+, Pr+ too. Also Her2+. I took 5 months of tamoxifen and then stopped. Bone pain was horrible for me. I have friend who have taken it without any side effects though...I also wanted to try getting pregnant. I promised my onc that i would "consider tamoxifen again" after a successful pregnancy. I never did. I DID have two healthy children and nursed them both on the "good side" 8 years later, I had a recurrence. Her2 - this time but definitely all about the hormones. I had a bilateral and am going on aromatase inhibitors this week. Not sure which one I will get. Not tamoxifen. The breast surgeon said that my type of cancer usually returns in 8-12 years anyway...so not sure if tamoxifen would have put it off at all. Any questions, you can PM me. Good luck!!

  • 3-16-2011
    3-16-2011 Member Posts: 279

    Hi youngsurvivor

    I am so sorry you are going through this. I was initially dx at age 48 and because I was under 50, I was tested for brca gene. I am brca2 posotive. This ment an agressive tx. I took tomoxiphan for 18 months, then stopped due to SE. Now I am stage 4. I dont know if taking tomoxiphan longer would have changed anything. I have no regrets. We all have to make tough decisions. I am gladd I tried the tomoxiphan for as long as I could.

    peace

    Mary

  • Noni
    Noni Member Posts: 74

    I was dx with DCIS in Dec 2007. I had a bilateral mastectomy and no further treatment. My docs did not feel hormones were necessary as I opted to remove both breasts, and there was no spreading to lymph nodes.

    Here it is 8 years later and after no follow up treatment I now find myself stage 4 with mets to lung and bone. I will be getting scans tomorrow to see if there's anything in my brain.

    Had I to do it over again I for sure would have done things differently. In your shoes, I would take the tamoxifen.

    Noni

  • 3-16-2011
    3-16-2011 Member Posts: 279

    Noni

    So sorry for your news. Cone check out stage iv threads including bone mets and live continues after stage Iv lots of hope and wisdom there

  • april485
    april485 Member Posts: 1,983

    (((Noni))) Hugs and prayers for you. So unfair!!! I hate BC!

  • edwards750
    edwards750 Member Posts: 1,568

    I am 4 1/2 years out with Stage 1a IDC Grade 1. I had a lumpectomy and 33 RADS treatments. I started out taking Arimidex and then ONC switched me to Tamoxifen. No SEs early on but now have recurring joint pain and some insomnia. I'm not going to stop taking it regardless. I know some women have debilitating SEs from the drug so they may have a different decision. Thing is I want to do everything possible to prevent a recurrence just like everyone else. I'm not willing to play Russian roulette with my life but that's me.

    You don't want to second guess yourself or look back and say what if so be sure of your decision. It's your body and your life.

    Diane

  • Mommyathome
    Mommyathome Member Posts: 876

    noni,

    That is frightening! That is what keeps us always worried about a recurrence! Cancer sucks!!!

    Can I ask you a question? Were you pre or post menopausal?

    I had a bmx for a Dcis diagnosis in January 2014 and a total hystertomy removing Fallopian tubes overies etc.

    I took away as much estrogen and progesterone possible. I know this doesn't guarantee against a recurrence either.

    We're u going to bs every 6 months?

    I was told I didn't need tamoxifen or radiation or anything else because I had the bmx. Now I question it..

  • StillKicking
    StillKicking Member Posts: 29

    I had DCIS with micro invasion in 2007. Double mast followed by chemo and about 4 1/2 years of Arimidex. I had lots of side effect, especially joint pain in first 6 months. While it did level off you're definitely not at 100% while taking it. So I threw everything at it, except for about 6 months of Arimidex, to make sure it didn't come back.

    Now I have been diagnosed with multiple myeloma, blood cancer, treatable but not curable.

    This cancer is a crap shoot. Make the best decision that you can and live your life.

  • nancy2581
    nancy2581 Member Posts: 407

    I just wanted to let you know that I have been taking tamoxifen for almost a year now. No side effects except for a few hot flashes. I would at least give it a try and see how you do that way you'll know you did everything you could have to prevent a reoccurrence. I also agree with April485 about your young age being a factor.

    Nancy

  • bluepearl
    bluepearl Member Posts: 133

    Young survivor needs to know that getting cancer at such a young age may indicate a genetic component as well and may put her at risk for ovarian cancer. That said, the younger you are the more years you do have in getting breast cancer but if you had the bilateral mastectomies, that chance goes down significantly but not to 100%. The Her2+ also means that tumor had an aggressive component to it, even if it was very small. Over all, the other breast is at risk in a unilateral...note my stats.....and the tamoxifen would definitely help greatly in keeping anything from happening in that breast. I feel that if I had taken the tamoxifen for my first cancer, the second would not have occurred or would have been even tinier. Cancer cells that are ER/PR + die when they are stopped from getting those hormones. Yes, it can come back down the road...so can a bus at the wrong time. Do whatever you can then you will always know you did everything you could. The rest must be left to fate.

  • leenso52
    leenso52 Member Posts: 19

    Young survivor101787; I'm not seeing any feedback from you on what you decided to do and how you are. I'm hoping you decided to get on Tamoxifen, especially after reading the testimonials from women above. Shocking, not to mention very scary to me. I am 64 now but after radiation for dcis last yr I opted not to take the hormones for my ER+ status. I too wasn't convinced by "statistics" that the benefit was worth the possible S.E. profile. But you are SO MUCH younger! It would never have been an option really, not to take it.. I see my M.O. next month and we'll revisit the topic of taking the anti estrogen drugs. Especially after reading the stories. I am so very sorry to all who had those horrible recurrences. I am an oncology RN and I take care of many women with late stage bc and many I knew when they were originally treated. This disease really sucks!

  • gammaw55
    gammaw55 Member Posts: 2

    So sorry Noni, HUGZ. Did you continue to see your doctor and have recommended tests done or go for tx when u had a problem.

  • sunshine1007
    sunshine1007 Member Posts: 1

    How are you now? I also opted out of taking the Tamoxifen and hoping it was the right decision. Also had BMX and rads with DCIS micro invasive. Doc seems to think I dont have anything to worry about and I dont really need to take it for the small benefit.

    Feb 24, 2016 02:03AM leenso52 wrote:

    Young survivor101787; I'm not seeing any feedback from you on what you decided to do and how you are. I'm hoping you decided to get on Tamoxifen, especially after reading the testimonials from women above. Shocking, not to mention very scary to me. I am 64 now but after radiation for dcis last yr I opted not to take the hormones for my ER+ status. I too wasn't convinced by "statistics" that the benefit was worth the possible S.E. profile. But you are SO MUCH younger! It would never have been an option really, not to take it.. I see my M.O. next month and we'll revisit the topic of taking the anti estrogen drugs. Especially after reading the stories. I am so very sorry to all who had those horrible recurrences. I am an oncology RN and I take care of many women with late stage bc and many I knew when they were originally treated. This disease really sucks!

    LOVE IS ALL YOU NEEDDx 11/2014, DCIS, Right, Stage 0, Grade 3, 0/0 nodes, ER+/PR-, HER2-Surgery 12/4/2014 Lumpectomy: Right

  • mountainmama1973
    mountainmama1973 Member Posts: 4

    I am only three years out and had a lumpectomy, mammoplasty (bilat) with removal of a 7.2 cm whack of high grade DCIS with micromets. Clear margins. I take the hormone blocker aromamisin every other day and take DIM and I3C (alternative) every day. MRI of breasts in 2017 and one year later in 2018 show no recurrence. Trying to stick to an anti-inflammatory diet, lots of useful supplements and plant based and we'll see what happens. Seems according to this thread, folks have their recurrences at 8-10 years. I refused radiation and lymph node dissection and have no regrets.

  • ms_anthrope
    ms_anthrope Member Posts: 9

    I completed treatment for microinvasive ER+/PR+/HER2+ IDC in Nov 2019. I've decided not to take an AI or Tamoxifen. I had a hysterectomy and oophorectomy in 2014 and the effects of low hormones and immediate menopause were hell on my body, from night sweats to joint pain, hot flashes, constipation, migraines - you name it. Even without ovaries I managed to have hormone positive BC and I still have many of the same symptoms. I'd rather have a decent quality of life than making these SE worse by further depleting the tiny hormone levels I have. If I have a recurrence, so be it.

  • AMLMom
    AMLMom Member Posts: 16

    I had a large area of DCIS with many areas of microinvasion and one area of IDC that was 0.6cm. I was told that the risk of recurrence was pretty low. I can't recall exactly, but I think my MO said less than 5% and that tamoxifen would reduce it to 3% or so - maybe even less. He said he wasn't concerned at all.

    I initially delayed taking tamoxifen for six months post-radiation. I then tried tamoxifen and originally the side effects were fairly minimal, but after a while I developed fairly bad fatigue among other side effects that were manageable. I couldn't stay awake past 7pm ever - it physically hurt to stay awake, which is difficult with a job and 3 kids. I decided to stop taking tamoxifen for a few months. I really just needed a break, and when I'm not taking tamoxifen, I can forget that I had breast cancer. Life feels normal again. Being exhausted all the time is very difficult and with such small odds of recurrence and a MO who basically said he's not concerned with recurrence, it's easy to be complacent when there is such a big impact on quality of life.

    I am just about to give it another go. I'm hoping for more success, and I'm really hoping that I don't have any regrets.

  • Sunrisefish
    Sunrisefish Member Posts: 35

    AMLMom there are just no easy answers to this question. You have to do what feels right to you and what you can live with. I was diagnosed 5 years ago - with a very small non aggressive 100% Estrogen driven cancer. I had a lumpectomy and radiation at that time. My Oncotype score was a 3. (the lowest they had ever seen). With that and no lymph involvement chemo was not recommended. It WAS recommended that I take Tamoxifen. I did for about 4 months and experienced many side effects so stopped taking it. Fast forward 2 years - the cancer came back in the same breast. I did a double mastectomy - still no Tamoxifen. Fast forward to this last October - cancer is now back in the lymph nodes. I just underwent having 26 lymph nodes removed (giving me a high chance of arm/hand problems and lymphodema), plus I am currently in Chemo. Do I regret not sticking with the Tamoxifen? You bet I do. Could it have saved my breasts and lymph nodes? Maybe... Maybe not. Who knows? But, for me... I know I'm going to have to tough it out on the Tamoxifen.

  • AMLMom
    AMLMom Member Posts: 16

    Sunrisefish - I read your post before you deleted it, but I didn't have a chance to say thank you for your reply until now. It helps a lot to have someone who has been through it share their stories and advice. I really appreciate it.

  • Kay7751
    Kay7751 Member Posts: 5

    Indole3Carbinol A natural estrogen blocker with noside effects.


  • TheLadyGrey
    TheLadyGrey Member Posts: 68

    At age 50 in 2010 I was diagnosed with a small IDC, mixed pathology. Some was ER+PR+ HER2- and some was the flip. Did the Herceptin and chemo drill then Tamoxifen for around 7 years.

    Had no SE’s. I stopped taking it because I just sort of never refilled it.

    In 2020 I was diagnosed with DCIS in the contra lateral breast. They treat it as a whole new separate cancer like you’ve never had cancer before so I have no pathology — had a mastectomy and reconstruction on both sides. It was not fun.