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scared and trying to prepare for tamoxifen

I'm supposed to start tamoxifen mid-May, and I am SCARED. I'm in the home stretch of 18 radiation treatments for stage 2 ILC and DCIS, removed mid-February in an oncoplastic breast reduction, clear margins, no lymph node involvement. I'm 47, premenopausal, periods like clockwork.

My MO basically said, "here's the prescription, just remember any side effects are better than metastatic breast cancer, see you in six months!" He called this a "pep talk." He also said I need to find a way to stay on this for 5+ years, because I am at higher risk of recurrence (ILC as well as LCIS) and outcomes will be better.

I am one of those people who gets side effects from even inactive ingredients in meds. Any meds I've ever been on need a lot of tweaking, because my body is that jerk. My sense is that tamoxifen triggers amped-up perimenopause symptoms, all at once. No gentle glide into hot flashes or whatever, just BAM! All of it! I am anxious about my quality of life when I'm currently feeling better than I have for a couple of years. My mom had such bad brain fog on tamoxifen she had to go off of it. I'm a technical writer and my job/career DEPENDS on my brain working. Not to mention the whole other hell of tamo side effects. Overall I'm having a lot of grief and helplessness, not to mention anger (I swear, if men had to take a pill with such side effects for half a decade or more, we would have better drugs by now!).

Is there a way to prepare for tamoxifen, physically as well as emotionally? Tips and tricks? Things to have in your tool bag for when something happens? I'd like to hope for the best but prepare for the worst. My sense is that the MO won't be helpful if things happen, and will tell me it's either a coincidence or all in my head. So I'm relying on you, the experienced folks who have been through this already. It's tamoxifen and me, locked in a room, and we're going to have to figure out how to make this work. Thank you!!

Comments

  • salamandra
    salamandra Member Posts: 736

    There isn't really. In general a healthy diet (whatever that means for your body) and keeping your body moving help with side effects of anything, but tamoxifen is kind of like hormonal birth control. You can't know how it will affect you until you try it. You might be 100% fine with the very first one you try.

    But here's some things it sounds like your doc didn't tell you:

    • It can take a couple of weeks to see how your body adapts, if not months. You might get early side effects that go away on their own, or late side effects.
    • Some side effects will go away with help. For me, I had terrible heartburn. I had to take extra strength prilosec for a while, but then I stopped needing it.
    • Some people do better on different brands of tamoxifen. This might apply to you especially if inactive ingredients bother you. If you find yourself having trouble on one brand, call your dispensing pharmacy and ask them to send you a different one. There is no name brand tamoxifen now, everything is generic. No way to know what will work fo you except to try.
    • Some people do better taking it in the morning and some do better taking it at night. Some people do better taking it in split doses. No way to know what will work for you except to try.
    • It is possible to get liquid tamoxifen, though your doc might have to special order it. This is another option if you suspect it is the inactive rather than active ingredients bothering you.
    • If you find you have side effects that you can not mitigate, ameliorate, or tolerate, there are other options:
      • toremifene is a SERM (same class as tamoxifen) that is used in other countries for prevention of recurrence in premenopausal women, though in the US it is technically approved for advanced breast cancer. I couldn't tolerate tamoxifen but toremifene worked fine for me.
      • Ovarian suppression plus aromatase inhibitor - basically putting you into artificial menopause so that you can take the meds that menopausal women can take. Some premenopausal women do tolerate this better. I thought there was some indication it might be more effective for higher risk cancers and possibly ILC, but I don't have ILC so I could be wrong on that.
    I recommend you go into this with an open mind and not borrow trouble. But hopefully knowing that there are things you can do will help. That said, your doctor sounds not great. It isn't your job alone to find a way to stay on them for five years - it's your job with your doctor together as a team.

    My impression is that too many oncologists don't want to deal with the side effects of the very meds they prescribe. But even so your doctor sounds worse than average. Most doctors very much want to know what side effects you're experiencing, both so they can try to help you stay on it and for their own experience and knowledge. Even if it turns out your side effects are can be treated, you need a doctor you can feel safe in approaching and confident in treating them.


  • spookiesmom
    spookiesmom Member Posts: 8,167

    Actually my DH did take a testosterone blocker for his cancer. His sweats were way worse than any I had. He’d get one, looked like he was standing in the shower. He refused to take it after a month of this He transitioned last March

    All you can do is try it, see how it goes. A small fan at night might help.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 151

    I’ve been on tamoxifen for about 6 months. I felt like it was making me very tired but I was just finished with chemo and tired from that. Anyhow I played with when I took it and have settled on taking it at bedtime.

    I also am committed to exercising most every day. Most days I walk. A couple days a week I lift weights. Some days I use my exercise bike or mono trampoline.

    for me, exercise had made all of the difference. Now I loved to exercise pre cancer. But still. My best advice to you is to exercise.

    I do think a positive mind set helps too. Believe that you will do well on this drug.

    Best of luck

  • parakeetsrule
    parakeetsrule Member Posts: 605
    Maybe try reframing it a bit. Instead of worrying how tamoxifen might affect you before you've even started it, remember what it's going to do for you: try to save you from metastatic cancer. Your oncologist is right: any side effects you experience now are better than the cancer coming back and killing you. And they're also going to be milder than side effects for the treatments you would receive for Stage 4 cancer.

    Hopefully you'll be one of the many women who sail through tamoxifen with few or no issues! But if you do have any, remember that it's a sign of your body busily fighting off cancer. There was even a study a few years ago that showed women who experience certain side effects had a lower rate of recurrence!
  • cheftoast
    cheftoast Member Posts: 24

    Thank you all for these helpful responses! Especially you, salamandra. I could have used even a little bit of this info at the appointment. Just knowing there ARE options, and that side effects can come and go -- good lord, the MO made it sound so inflexible and that scared me. Your comment also made me realize that I should pay attention to how this MO responds to whatever happens, and look elsewhere if he's not helpful.

    Because I DO want to be able to stay on this as long as I have to. I'm very into not getting cancer again, much less metastatic breast cancer. Also, anxiety has been a battle for the whole pandemic, but cancer really made it flare up again. So I'm trying to manage that while also doing what's best for myself. It's been a lot. Your words all help so much -- thank you for taking the time to respond!

    Walking has been my main exercise, but cancer has been a wake-up call in a lot of ways. Sounds like all I can do before starting tamoxifen is front-load the usual healthy stuff: exercise, vegetables and fruits, drinking water, little to no alcohol, good sleep hygiene, etc. And yes, try to keep my head on straight, that I am taking this med to help myself.

  • salamandra
    salamandra Member Posts: 736

    I'm glad it was useful. Most of it didn't come from my oncologist either, but from reading these boards and also using what I learned here as jumping off points for my own research.

    When I couldn't tolerate tamoxifen, I was the one who brought up the liquid version of it to my doctor, as well as the suggestion of toremifene. Thankfully she was at least open to it. This is at one of the top cancer centers in the country. She followed up with her own research and came back to me.

    I don't know why education and support for these hormonal drugs seems to be so poor across the board. It's like chemo and radiation are the fun and exciting parts for the doctors, and hormonal drugs are boring maintenance that they'd rather not want to be bothered with. My doctor's office keeps trying to send me to the integrative medicine department to help with side effects.

  • edwards750
    edwards750 Member Posts: 1,568

    I was DX in 2011 with IDC. stage 1b, grade 1. My doctor started my treatment with Arimidex because I was post-menopausal. I already had osteopenia and test drug attacked the bones so it developed into osteoporosis. Ugh. She switched me from Arimidex to Tamoxifen after one year.

    I have been one of the lucky ones because other than sometimes being difficult to concentrate I had no real side effects with the drug. Hope you will be one of the lucky ones too. Lots of good advice from these ladies.

    Good luck!

    Diane

  • 1982m
    1982m Member Posts: 224

    I'm it sure if this is helpful but I'm 40 and I started tamoxifen 5 1/2 weeks ago. So far it hasn't been that bad. The first week I did have some hot flashes- but not much since. I notice minimal increase in vaginal discharge. I take it at supper time (5pm) so that it peaks while I'm asleep. I have noted I've been waking up between 5-6am since I started but who knows since it's been back to back treatments. I'm still getting a solid 7hrs at night.

    I honestly was the most worried about tamoxifen- more worried about tamoxifen then chemo, surgery or radiation. Despite how nervous I was- it's not been difficult.

    I am still do radiation so I'm not sure how it's impacting my fatigue. I was pretty tired after chemo and then had two surgeries and now radiation.

    I hope you have very little trouble with tamoxifen. I was really pleasantly surprised how good it's going so far.

  • MagicalBean
    MagicalBean Member Posts: 192

    I was terrified to start tamoxifin too. My PA told me to give it a try, and stop if the SEs got too bad. For me, it was not bad at all. Initially, I was a bit tired but that went away. My hair got a bit thinner but grew back as soon as I finished the course. Every day, within an hour or two of taking the pill, I got the chills for a few minutes. Very convenient in the heat of summer. Minor issues with what I hope is a shield of protection.

  • Valentina7
    Valentina7 Member Posts: 53

    cheftoast,

    I have been 4 years & 4 months on Tamoxifen.

    I think I have had some of the side effects but in general I have been doing fine.

    I exercise a lot, run every day and keep a very healthy diet. I eat a lot of vegetales and fruits.

    As mentioned I have had some side effects but I have always talked to my doctor about it and we try to find something that will help with the side effect.

    One of my doctors recommended me to take Tamoxifen 7 years as long as I feel OK. This is because I was 33 at the diagnosis. My goal is for sure 8 more months...after that if I feel fine I will continue for 2 years.

    I try to have a very positive attitude

    Warm greetings

  • bcincolorado
    bcincolorado Member Posts: 4,696

    I did 5 years on Tamox (generic) and then 5 on Letrozole after that. i figured yes, I got some hot flashes and yes, I did gain some weight no matter what I ate or how I tried but decided it was worth it not getting cancer again. Hang in there. If you have any other bad issues tell your doctor. There is a good comparision chart on the main pages too if you have not seen it for hormonal meds if one does not work for you there may be another that is better for you. Best wishes in your treatment.

  • wondering44
    wondering44 Member Posts: 252

    You won't know what SEs you will have until you take it. I fretted over taking anything due to changes to QOL. I did lots of fretting without any results other than undue stresses. I started Letrozole and took it for about three months before it was recommended I stop and switch to Tamoxifen. I opted out of Tamoxifen and am moving forward with OFS and adding an AI after two to three months if my labs show I am in menopause (different medical oncologist). New MO said the OFS + AI provides a 20%-22% better result overall. I can always backtrack to Tamoxifen if I don't tolerate the AIs.

    I'd prefer to take a risk with SEs rather than not try to prevent metastatic disease. That was where my thought process ended up after all of my fretting. I think every person comes to their decisions based on their process of information and QOL.

    Here is the NCCN write up on adding adjuvant therapy for additional information.

    https://jnccn.org/view/journals/jnccn/19/5/article-p484.xml

  • findingoptimism
    findingoptimism Member Posts: 31

    I, too, am sensitive to medications so I can empathize. I would recommend a couple things. I found that I had a series of different side effects, but each lasted 2-3 months, so it was worth having some patience to see if the side effects would resolve. It was valuable to keep a log of any effects you are having so you can have a meaningful discussion with your MO around documented facts. Some of the side effects can be mitigated. I felt for a long time that my MO was unsympathetic about the side effects, but over time I have adjusted my attitude. This set of medications is proven to work so MOs really need to encourage their patients to push through the challenges. There is not too much more they can do. Lastly, it is important to know that different manufacturers have different ingredients so it may be worthwhile to try a different brand. I wish you luck. It took my body about 2 years to adjust, but now the impacts are minimal. That said, I am counting down to my 5 years.

  • cheftoast
    cheftoast Member Posts: 24

    bcincolorado, I haven't seen that comparison chart. I'll dig around for it, thank you!

    Everyone's responses and experiences continue to be so helpful. My RO, at our weekly meeting a few days ago, asked how it went with the MO. I told her, she said "well that's not helpful!" and told me I should start on 5mg for a week, then step up to 10mg, then go to 20. Did I even know that was an option? Not from my MO! She said I would probably cycle through side effects and this would give my body a little time to get used to the drug. It was such a relief just to be believed. And also, to know about options vs. just "see you in six months, bye!"

    At my radiation graduation meeting next week, the RO and will pick a date together when I'll start the tamoxifen. Meanwhile I've already ramped up my exercise to get through radiation, and will try and get some dietary adjustments in line too. I still feel scared, but also way more held by people who believe me and KNOW there are ways around the potentially tough aspects. This has been such a weird time -- everyone wants to celebrate my being done with radiation, like it's "done with cancer." But no one knows about the grind of the endocrine therapy. Maybe like you said, salamandra, it's not as dramatic or "interesting" as the other treatments. IDK though, something that can change your daily QOL seems plenty interesting to me. Appreciate all your stories!

  • ithifo
    ithifo Member Posts: 2

    I can't tell how much I understand your message. I have been dong imaging since I was 35 due to positive family hx. I was diagnosed last July [2021] at 41yrs, doing annual 3D mammogram, with Invasive ductal carcinoma ER/PR+, Her Neg. OncotypeDx RS 16 so overall risk at 9 yrs of 4%...but is it a perfect science/algorithm?

    Due to strong family hx of BC + other cancers, super dense breast tissue (decreasing significantly the sensitivity of imaging) and negative genetic testing [regardless the strong genetic component--negative genetic result is not always a true negative in such a evolving field of medicine], I elected for bilateral total mastectomy and breast reconstruction. No regret on decision.

    I started Tamoxifen last September between the mastectomy & breast reconstruction. AT FIRST, I was thinking I was overall tolerating it well...until after the second surgery, after I restarted to have a "normal" life/back to work/back to "relaxed COVID bubble" --As you said it well--"tamoxifen triggers amped-up perimenopause symptoms, all at once. No gentle glide into hot flashes or whatever, just BAM! All of it!" I have ALL the symptoms to the worst --unexplained sadness/depression. I did not know that I could cry SO much and could have "PMS" --I never have experience PMS nor heavy bleeding in my life of being a women -- quality of life going down "the toilet"; the feeling of not recognizing myself, brain fog, insomnia, night sweats. I'm molecular geneticist and like you, "my job/career DEPENDS on my brain working". I would walk my dog or drive my car and think that if I die now, today or tomorrow it's ok. I tried to change the schedule--taking it at night? before bed? before dinner or morning...Hoping for a "magic positive outcome". My oncologist said to stop Tamoxifen for now so that we run more blood/imaging and get my "mental health" to a better place. The initial blood tests showed normal hormone levels except for low vitamin D and very high Estradiol 2-- over the chart high-- E2 consistent with perimenopause, consistent with Tamoxifen doing its "job"...solution? I already exercise every day, plus yoga, daily meditation, weekly therapy, wellness coach, eat organic and balance... what else other than adding sleeping pills, depression medicine, anxiety medicine...as my oncologist says "most people with cancer diagnosis need antidepressant to cope AND most women transitioning to menopause...you need to cope that things/life might never be the same" . I thought right after I stopped Tamoxifen (last week) I was already feeling better (placebo effect she told me!)--I have not cry for the last 72 hours!! But today, I realize that there is very little options for pre menopausal women with BC --I can take a chance and hope the "dormant cancer cells" that escaped my breast tissues (even before the surgery as it was already invasive and highly vascularized) stay "silent" but facts are telling me that my 3 paternal aunts died of metastatic BC (brain, bone, lung...) not from their initial breast cancer...and less than 10 yrs after their diagnosis. So here I am, swallowing Trazodone (antidepressant) for couple days/weeks and get myself ready for my next appts with my clinical team. To be continued...

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,742

    ithifo,

    Yes, tamoxifen and AI’s can bring their own issues for some. Each of us has to exam our individual risks for recurrence and/or metastasis to determine whether taking a drug is worth it.

    You mentioned that you had several aunts who passedaway with metastatic breast cancer. No one dies from cancer confined to the breast as the breast is not a vital organ, so deaths from breast cancer are only because it metastasizes to a vital organ. A local recurrence,i.e. in the breast, is not something anyone wants but that’s not will kill you. The long term goal of bc treatment is to prevent metastasis. Good luck with your treatments.

  • ithifo
    ithifo Member Posts: 2

    "Your reply" --ALL the reasons why I did not share or comment on BC forum before today. Everyone knows BC doesn't kill --only metastatic BC. Thanks for your kind words.


  • Blessings2011
    Blessings2011 Member Posts: 1,801

    cheftoast - I went through this very conversation with myself six months ago when I was faced with starting Tamoxifen.

    My first breast cancer was dxd in 2011 - small and early, but I had the maximum surgery (mastectomy with implant reconstruction) for it, and didn't need chemo or rads. I did, though, need Arimidex on the advice of my MO. Within six months I was so miserable from SEs, I was granted a one month reprieve. Unfortunately, I did this two more times, even switching to Femara, with no relief. Finally, after 18 months, I quit altogether with my MO's approval.

    Fast forward to 2021, when I found two small lumps in my mastectomy suture line. Two biopsies later, I found I had papillary carcinoma. For many reasons, I declined radiation, but could only do that if I agreed to start Tamoxifen. That was a tough one, but I started Tamoxifen last October, with the belief that I wouldn't know if I could tolerate it until I tried.

    Initially, I had some nausea, which resolved when I took it at night. I'm post-menopausal, and the drug didn't bring on any hot flashes whatsoever. It's been hard to lose weight, but I think it's probably all the salty snacks I eat. The biggest issue for me is bone and joint pain, but I also have a genetic disorder (Ehlers Danlos Syndrome) that causes the same thing. I know upping my activity level would help.

    Tomorrow I see my MO for my first six month checkup. That little white pill is the only thing standing between me and another recurrence at this point, so I gladly take it. Worst case scenario: I can always quit, if that's my decision, but I don't think it will be.

    I'm hoping that you are pleasantly surprised by how well you tolerate the Tamoxifen.

  • cheftoast
    cheftoast Member Posts: 24

    blessings2011, thanks for sharing this story. When the SEs are really loud that probably seems more "real" than the risk of recurrence, until you're there. So yours is a really helpful perspective. I'm glad you're tolerating the tamoxifen well, and I hope it helps! I'd love to hear from more people for whom it's just another pretty boring med they take for several years and then are done.

    In other news, my RO recommended a kickass woman MO who "knows everything about everything," so I'm switching to her if she's taking patients. I read the notes from my current MO and he claimed he gave me "emotional support" in our meeting. The hell with that guy, just tell me how to work with the SEs! Grateful to have options. I start the tamoxifen at 5mg in one week.

  • HoundMom
    HoundMom Member Posts: 7

    I am allergic to all types of medicines and have managed to take tamoxifen. I had crazy hot flashes at first but just at night. I do think it has given me some brain fog but I am a computer engineer and have been able to work. My biggest SE was joint pain but I was able to exercise through it. I am now less than a month away from teh end. Take heart - you can manage this as well.

  • cheftoast
    cheftoast Member Posts: 24

    houndmom, I love this report, thank you!

    I’m 13 days post-rads and about to take the first pill. The RO and SO agreed I’ll do 5mg for a week, then 10, then 20. Hopefully that’ll help my body adjust and help me keep side effects straight.


    Even better, I’m getting a new MO!! A kickasswoman who’s in my system and has tons of experience. Also, turns out I just feel better having a woman MO. We’re meeting for the first time in two weeks. I feel so relieved — I won’t be in this alone for five years.


    While I’m still feeling very anxious about side effects, at this point I just want to get this over with. My period just ended so of course I’m feeling pretty good. Thanks for helping get me to this place!