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Any Early 40s Declining Tamoxifen?

Spoonie77 Member Posts: 532

Hi all --

I am really struggling with the decision to take Tamoxifen. I have the RX filled and stare at it every day. It's been two weeks since I switched over from Cymbalta to Pristiq, and RADs is finished, so technically I should be taking it. Le Sigh. I just can't yet.

I've done my own research and talked to a few survivors and my doctors. I still can't really get behind it.

There are a few reasons for this.

Mainly, my quality of life, prior to BC, due to my many other chronic health conditions was/is fairly poor. I just can't justify putting myself through extra pain, fatigue, nausea, migraines , (all of which I have boat loads of daily!) as these are (as far as I can see) the most common SEs. In turn, possibly making the next 5 years of my life extra hellish, in the hopes of preventing a recurrence (one of which I may never have either way).

Other issues being I'm young. I don't want to be put into menopause. I don't want to age faster, lose hair, gain weight (that's already a struggle do to illnesses), and exacerbate my depression/anxiety. I'm single and some of this might be a different story if I already had a boyfriend/husband longterm.

I'm confused, mostly, on the statistics. It seems there are different studies and different rates of prevention. I'm not sure if they vary for different age groups, different cancer stages, and so forth. But the one thing that stands out is that even with Tamox on board, recurrences can and do happen. What exactly is the benefit? How much of prevention/risk reduction is there? 10%? 15% compared to no Tamox?

I just don't have the answers. What have ya'll learned?

Have others chosen to forgo Tamox/Hormal blockers?

It seems the studies I look at don't really talk about the benefits for younger women vs the extra risks for the same. This is where I fall and so I wish there seemed to be a more clear answer here. Maybe I'm just not looking in the right place?

Also, does anyone know if having a prior LSIL or an HSIL (low/high grade squamous cell lesions of the cervix) would put a person at a higher risk taking Tamoxifen?

I had asked my MO about this and she said no, also she didn't think there was a need for a baseline uterus ultrasound or anything prior to beginning Tamox. That just seems off to me.

What have others experience been with a baseline Ultrasound before beginning hormonal meds?

I know these are a ton of questions but I'm really struggling. Any help is appreciated.

ETA (12/11/18) -- After much searching through studies and information, I've decided Tamoxifen is not a good fit for me, re: my mental health, my QOL, and my immune system. I didn't tolerate Pristiq or Effexor at all, even though they upped my dose of it to 100mg. My QOL is already a struggle, I can't afford any other destructive or possibly permanent SEs in my life. That, plus the my immune system, sad shape it's in, is all I've got. In this thread there are links to lots of studies that show Tamoxifen effects a persons immune system to a substantial degree. For me, I know this would be a nail in the coffin. I respect everyone who's doing their best to do what's right for them and their own situation, this just happens to be what's right for me. Wishing everyone healing on their journey.

ETA (06/17/19) -- After having a 2nd Opinion in January, my new MO informed me that my 28-35% RR was also for METs. I had not been aware of that previously so I took another look at Tamoxifen. Eventually decided to try 5mg daily, as she gave me studies that show it's just as effective as 20 mg and that I could stay on Cymbalta w/o decreasing effectiveness. I'm thankful I gave it a shot (March - May). Bluntly put, by the end of the 2 months I was ready to jump off a bridge to escape the pain and I had ZERO quality of life. That was enough to show me that Tamoxifen was not a livable treatment option for me. The link to my last update and screenshots of a list of the SEs and how they impacted my QOL can be found here: Page 4

We all know Tamoxifen is not a guarantee. My thought process in the end was that yes, I could try to suffer through 5 years and as a result end up missing nearly 85% of my life from ages 42-47, and worst case scenario STILL have a recurrence or METs. How would I feel then? Would I be able to live with myself in that case?? No. Not at all. I would absolutely regret spending those years suffering and missing out, when I could have been living.

None of these decisions are easy ones, but they need to be ones we can live with. I can live with this decision. I gave it my best shot. Wishing all of you better luck with Tamoxifen than I had, we are all different and my journey will not be yours. Hugs and healing.

ETA (02/25/20) Tamoxifen @ 5mg failed me in Spring 2019. Next plan was Zoladex for Ovarian Suppression summer 2019. After my first injection I found out I have a life-threatening allergy to this "family" of medications. Oh joy. So that took that alternative away as well as the Tamoxifen I couldn't tolerate. Later in Sept I was dxd with MS. My Oncologist said that due to my new dx and the extreme difficulty I'd had on 5 mg of Tamoxifen she wouldn't advise me to continue further anti-hormonal txts. These (surgery/hysterectomy & post meno meds) would very likely exacerbate and progress my MS according to most recent studies. She wasn't willing to make a KNOWN morbidity worse in the hopes of POSSIBLY avoiding a recurrence that may or may not ever happen, even with my RR being between 28-35%. Soooo I'm without a net and hoping that I made the right choices with my LMX and RADs, as that's all that I have available. The rest is up to the Universe.



  • veeder14
    veeder14 Member Posts: 269
    edited November 2018

    Hi Spoonie77

    Although I can't answer most of your concerns, I would suggest requesting a baseline ultrasound before hormone meds. I had two prior ultrasounds before starting Tomaxifen. Then had a follow up last week after 4 months on it and I've got a 17mm thick uterine lining which post menopausal women should not have. The doctor said it's definitely due to taking the medication. I'm glad I had 2 prior baseline ultrasounds to compare so we know why this happened.

    My MO said the risk reduction from Tomaxifen is 50%. Also I read that the drug stays in your system for years after quitting it but at a much lower percentage of protection from recurrences. I hope some of this information is helpful to you.

  • Sara536
    Sara536 Member Posts: 5,937
    edited November 2018

    I would definitely repeat your request for an ultrasound. It seems very unwise not to have one especially since you've had the lesions on your cervix. An ultrasound is a relatively inexpensive test. Why would she not want to know what the baseline is? With everything else going on, you need it for your peace of mind. You need all the information you can get in order to make your decision, and, this is your decision. Better yet, I would suggest that you make an appointment for a second opinion. You might find that a different MO is better at hearing and responding to your concerns. This is going to be a long relationship (hopefully a partnership) so it is worth finding someone you feel you can trust.

  • Dreamers1989
    Dreamers1989 Member Posts: 19
    edited November 2018

    there is a thread on here. I think it was titled “does anyone actually feel better on tamoxifen”. Something like that. There were tons and tons - majority it seemed of posters that had little to no side effects. Or some that began and died off slowly. Ie hot flashes / mood swings.

    I asked my MO questions that were related to weight gain and he said that hasn’t actually been a proven side effect of tamoxifen and majority of women don’t experience it. Some who do may be due to lifestyle changes during and after breast cancer treatment (including chemotherapy) which may induce early menopause or psychosocial disturbances. If you read the positive thread on tamoxifen so many women actually lost weight! Was an amazing and uplifting thread to read.

    My MOalso did not seem to think tamoxifen would put me into early menopause but that there were other hormonal medications that if my oncotype were higher they may have considered for me that most certainly would have. I’m in my thirties so had very similar lines of questioning.

    I wish you the very best of luck. I hope that if you do decide to take the pills you experience little to no side effects. Xo

  • dtad
    dtad Member Posts: 771
    edited November 2018 start I understand your QOL issues. I also had poor QOL when I was diagnosed with BC. It was probably the main reason I refused an aromatase inhibitor. Also the risk of recurrence while taking Tamoxifen is reduced by 50 percent. So if your risk factor is 10 percent it would be reduced to 5 percent. Only you can decide if you are willing to take the risk. As far as weight loss is concerned everyone is different. I would be concerned about your cervical changes also. Tamoxifen has been shown to increase your chance of uterine cancer. I would not take the word of your MO. IMO you should ask your gynecologist and might also get a second opinion from another MO. I know there is alot to think about! I'm not trying to discourage you. Just trying to answer some of your questions. My advice would be to do lots of research before making your decision. Breast cancer is a very complicated disease. Good luck.

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited November 2018

    Thank you everyone for the support and information. I really appreciate it.

    I will look up that thread and also ask my MO again about the US.

    I think If she's unwilling to get a baseline, I'll ask my primary doc. It's tough for me though, as right when I was dxd, I was in the process of moving to a different state. So I'm meeting and establishing care with ALL new docs for all specialties, not just for the cancer. Uggh. It's been tough.

    Dtad -- > Thanks for the stats. Would my recurrence rate be my Oncotype score or is this somewhere else? I have so many pages of drs reports and as you all know, there is so much info thrown at us at appts that some gets "lost" in our brain somewhere. But hearing that the proven rate of reduction on Tamoxifen is 50% of whatever your recurrence rate is very helpful to me. I can look at it mathmatically this way in comparison to my QOL.

  • pupmom
    pupmom Member Posts: 1,032
    edited November 2018

    Spoonie77, the Oncotype DX score is based on the assumption that you are taking Tamoxifen or an AL. You would have to check with your MO to get stats for recurrence without Tam.

    Btw, I've been on Tam for years have only mild hot flashes now. No other SEs.

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited November 2018

    Just an fyi for anyone who comes looking for info, like I've been trying to find, I stumbled on a very helpful (to me) thread: "Tamoxifen absolute vs relative benefit -- is it worth it?" Maybe it might help others.

    Thanks PupMom for the clarification. Much appreciated. :)

    I intend to msg my MO today to see what they say.

    Due to my QOL, I'd have to say that if my recurrence rate is low (less than 10%) and now knowing Tamox would only reduce it (whatever it actually is) by 50%, I'm going to be totally at peace with saying no to Tamox. I have struggled my entire life to have energy, less pain, and just be able to take my dog on a walk once a day is a high point for me....I will not sentence myself to the SEs for that "possibility". Just how I feel. If however, they tell me my recurrence rate would be much higher, then I'll need to do more thinking on it.

  • Dreamers1989
    Dreamers1989 Member Posts: 19
    edited November 2018

    is it possible to ask your MO if there’s any harm in trying it and then going off of it should you notice symptom progression? Can the act of starting it then abruptly stopping it cause any negative outcomes ? i.esome meds like humira or methotrexate you have to slowly ween your body off of.

  • pupmom
    pupmom Member Posts: 1,032
    edited November 2018

    Dreamers, I've gone off Tam several times for surgeries. No weaning required.

  • Dreamers1989
    Dreamers1989 Member Posts: 19
    edited November 2018

    that’s good to know! Thanks pupmom:

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited November 2018

    Hi Dreamers - thanks for stopping by. I hesitate to start it just because of my own personal history with meds. I tend to be the one, in my experience, to have the SEs, the rare ones, have bad reactions, and so forth. My body, IMO, has never met a drug it likes.

    In fact, the new med my drs transferred me over to so I could take Tamox, meaning the Pristiq instead of my Cymbalta, is throwing me for a loop and I'm having literally about 15 new SEs to deal with just from the anti-depressant switch. Ugggggh. But according to my psychiatrist, I should have tolerated this lateral change with no issues, yet here I sit, with a ton of issues from this one change. Waiting to see what she suggests next - dose change or what.

    Right now, as it sits, I'm not even sure I'm going to be able to stay on this in order to try (if I decide to) to take the Tamox. It's just awful. At any rate, like I said, it tolerates "some" but the only way I can do so is with a TON of tweaking of my lifestyle, diet, exposure to chemicals, and homeopathic means, plus acupressure/acupuncture/yoga, and so on.

    In fact, some meds, like methotrexate, humaira, which I've had the "pleasure" (uggh) of being on before, left me with long term SEs that even though I only took them for about a month or two, it took nearly a year and a half to recover from and get my "health" back to where it was prior to those meds.

    You see, I have a VERY complicated medical history. I have MECFS, Fibro, Sero-Negative Rheumatoid Arthritis, Chronic Late State Neuro Lyme Disease, Chronic Inflammatory Response Syndrome, Raynaud's Syndrome, CFS, Insomnia, Neuropathy in my hands and feet, Major Depressive Order, Anxiety Disorder, Myocarditis, High Blood Pressure, Hypothyroidism, along with a bunch of other things, not too mention Breast Cancer now. Most of all of those where triggered by the Lyme Disease as a teenager, and it's spiraled from there. It's a mess, granted it's my mess :), but prior to cancer entering the picture I was making progress (baby steps are a miracle for me!) and knew how to make me "function" day to day.

    For me every day waking up feels like I was hit by a truck. I wake up to bone/muscle pain, fatigue where I feel like I could sleep for years, extreme stiffness in my joints/muscles (that does not go away with stretching/moving), anxiety/panic attacks on a regular basis, migraines on a bi-weekly basis (ones that leave me puking/in bed for days even with rx meds to help), sensitivity to sound/light so much so that being exposed to too much of that stimuli leaves me nauseous/puking/triggering another migraine, joint swelling that comes and goes, my skin literally feeling like just the sheet resting on it is a thousand of knives slicing me up (called Allodynia), dizziness (not caused by meds but by Vertigo), and well, the list can go on and on.

    Maybe knowing all that, others might see while adding "just one more med" into the mix for some might seem easy or not too risky, however from my POV, it is the equivalent of "this might be the straw that breaks the camels' back" and triggers my other syndromes/immune system into tailspin that I can't/won't recover from. It's scary, which is an understatement.

    So, we'll see what my MO says and I'll try to keep doing more research on my end.

    Thanks everyone for continuing to offer support and information. Even though I'm not starting Tamox at this time, I appreciate all view points and offers of ideas to help me move forward.

  • Sidalee
    Sidalee Member Posts: 113
    edited November 2018

    Spoonie, I know your situation is unique, but maybe consider checking out the Predict tool online. I found it very interesting because according to my stats, hormonal therapy was the most-impactful of all possible treatments--double the impact of chemo and targeted HER2+ therapy individually in my case. The 3 treatments combined increase my survival by about 18% over 15 years and that doesn't include rads.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited November 2018

    Hey Spoonie, I will preface this by saying I respect your decision, either way. I just wanted to throw a couple things out there, because I had some of the same struggles when I started hormone therapy.

    When I first started tamoxifen, I had bad side effects. I almost quit. My oncology nurse practitioner encouraged me to stick with it, and said that side effects often normalize after your body adjusts. I didn't believe her, but I did stick with it. After a month my side effects were much better. After two months I had no side effects at all.

    Also, tamoxifen doesn't actually put you into menopause. Ovarian suppression and AI's do, but not tamoxifen. I've been on both, and there is a big difference. Which brings me to my next point... I recurred while I was on tamoxifen, even though I had a single digit recurrence probability back then. Because tamoxifen failed me, I switched to OS+AI.

    In any case, dealing with recurrence is hard, but I was glad that I had done what I was "supposed to do" to prevent that. It's not a pleasant thought, but you may have to do some soul searching on that possibility. If you recurred, would you wish you had tried tamoxifen?

    I'm not trying to sway you, but I just wanted to throw that out there because I've been through that. Best wishes to you.

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited November 2018

    @Sidalee --> is this the calculator you were referring to?

    If so, my benefit from Tamox via this calculater seems to be 1% (@5yrs), 4% (@10 yrs), and 5% (@15 years).

    Your thoughts are exactly why I want to know from my MO what my recurrence rate would be. For you, the endo therapy made a huge impact on your future. If mine would be in that range, I would have a huge issue with myself, turning it away. I would surely try it before making the final decision. I think the unknown at this point (what my recurrence rate) actually is w/o endo therapy is the hardest....need to know.

    @Buttonsmachine ---> I totally hear you and respect your thoughts. I appreciate them, most definitely. Thank you so much for sharing your experience. I'm sorry you have a recurrence, but I'm glad that you are at peace with all of the steps you took to try to keep that from happening. WIshing you the best in your current treatements.

    Like you mention, I know that whatever I choose, I want to be able to live with myself if heaven forbid I do recurr. This was the same type of journey I went through with my MO when she said she didn't see the need for chemo but that it was up to me, since it was at the low edge of the intermediate range Onco. I was relieved at first, yay no chemo! And then reality set in. What happens if I choose no chemo and it comes back? Could I deal with that? So I wrestled with that, asked for other tests to confirm the Oncotype testing (Mammoprint & KI67 both confirmed), and did research. I didn't want Chemo but I also didn't want to look back and say I should've crossed the T's and dotted the I's. So I did the leg work there and can say that I made peace with not doing Chemo. I just want to be sure I'm doing the same here, before I add a new med into my puzzle that possibly could upset the whole apple cart.

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited November 2018

    Sooooo.....I heard back from my MO today.

    And I quote, "There is consensus that Tamoxifen can reduce recurrence risk up to 40 or 50 percent so you can have a recurrence risk of 28-35% without it."

    That feels a bit too close to a coin flip for me. :(

    I really feel in my gut that Tamox will screw up my treatments for my other conditions, because of the effect it has on hormones. Without the way things run now, with the balance my team has worked so hard to get to, I'm worried I will lose all headway in treating the Lyme (which causes my heart issues and more) and healing the damage it has done to my nerves, cells, brain, and so on.

    I feel like I was hit in the gut with a new diagnosis just now. Holding back tears.

    I don't want to do this but I also don't want the cancer to come back, but again, Tamox isn't a given that it will keep it away and it's not a guarantee that I'll have a recurrence to begin with.

    Welp, crap. ...

  • pebblesv
    pebblesv Member Posts: 486
    edited November 2018

    Hi Spoonie77 - I'm in a very similar situation to you, and have not started Tamoxifen YET as I'm going through radiation therapy. I think I'm going to try it but I 100% understand what you're feeling, and also the back and forth and wondering the right thing to do. Here's what I can offer:

    - I'm also low end of intermediate for Oncotype. My Oncotype score is 21, where basically the rate of recurrence with chemo is/was exactly the same as the rate of recurrence with tamoxifen only and no chemo - which is 13%.

    - I asked my oncologist what the rate of recurrence was/is if I did nothing, no tamoxifen even. He said 20%.

    - I feel like I have to give Tamoxifen a go because it's my ticket out of chemo right now, but like you, I'm very, very concerned about side effects. I'm seeking the people who have had little to no side effects! I'm 43, I still feel way to young to have to be dealing with menopause-like symptoms. I've been trying to lose weight as I think gaining weight may have had to do with getting breast cancer, and find it ironic that the medicine to prevent a recurrence could also cause weight gain. I did hear though that weight gain has not been proven in medical studies, and read a blog about a women who claimed to try every diet and couldn't lose weight until she tried "clean eating". So maybe it's more what you do.

    - My sister's friend was on tamoxifen, got a blood clot, and had to have a hysterectomy which removes your ovaries. She has a history of blood clots and supposedly it's rare, and she also went through chemo, so maybe it's a much rarer thing to happen, but again I'm trying to research every which way to avoid blood clots - keep moving, do yoga, make sure my diet has omega 3's (from fatty fish etc.). I give her props for being brave and just doign the hysterectomy and whatever she needed to do, but she has 2 kids, and my husband and I don't have any children and I'm not sure I'm OK with just getting the ovaries removed. We have to think about our quality of life too, and I'm not sure the doctor's think that way.

    - I know another lady on Tamoxifen who has had no side effects. She is post-menopausal however. She had difficulty with the AIs and they switched her to Tamoxifen and she's been doing great since.

    - I'm encouraged by the people who have had little to no side effects and they exist. @pupmom is one - thank you for your example! There's another who said she slowly adjusted to taking Tamoxifen, took only 1/2 does for 3 weeks and then the full dose, takes it at night, also had little to no side effects.

    @buttonsmach - so sorry to hear about your recurrence and we are all here sending you good vibes to beat this once and for all! May I ask what your oncotype dx score was?

    - @Spoonie77 - you might want to look up Suzanne Somers and her story. She had breast cancer, did the surgery and radiation, but said no to chemo AND said no to Tamoxifen. She has thrived with no recurrence. She did other things from a nutritional and holistic healing standpoint and it's worked out well for her. Worth researching for another perspective!

    As for me, I had the surgery, and going through radiation right now (1/3rd of the way through and so far no side effects, yay!), and will start Tamoxifen after that. Going through IVF stims to pull some eggs in the meantime BEFORE I start Tamoxifen. For me personally, I've decided to give the Tamoxifen a try and hope that with nutrition and exercise and all the things I'm researching now that I can avoid the side effects as much as possible. But I waver sometimes, and part of me is tempted to just go the nutrition route and no Tamoxifen. However, because I'm not doing chemo and the reason I'm not is because Tamoxifen has been proven to be just as effective as chemo in my case, I think I need to give the Tamoxifen a go. I hope it will go smoothly but I will have to evaluate as I go along.

    I was on Letrozole for 2 weeks as it's part of the stim treatment to help follicles grow (ironically!) and I had no side effects on that, even though I'm pre-menopausal. But it was a short-term thing, I think I heard somewhere that if you're pre-menopausal, the AIs are not an option, and Tamoxifen is what they give for women in their 40's who are pre-menopausal (us!).

    Anyways, best of luck with your decision and please keep me posted. We have very similar stories and situations.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
    edited November 2018

    Hi, everyone. My best advice, is to work with your doctor to form a plan for slowly introducing any new drug into your system. The slower you go, the more easily your body tolerates incremental change. If you had children, recall when we had to introduce new Gerber foods slowly, and start with carrots/peas before bananas? Remember, it is not how you start the medication, it is how you adjust to taking it, and how long you are able to take it. If I get a sinus infection, I won't take Tamoxifen with an antibiotic. The antibiotic that I use, also requires the same enzymatic pathway as Tamoxifen and as a steroid shot. So, if I need to, I take a little break and resume when better. If I were to choose between the animal that I am most like, from either the turtle or the hare, I would be the turtle when it comes to major change. Slow and steady wins the race.

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited November 2018

    Thank you Pebbles for sharing your own thoughts and processes about Tamoxifen. You're right, on similar paths and similar thoughts. Wishing you the best of luck on your IVF journey - I can't imagine going through that process on top of all the rest we are going through. My thoughts are with you!

    With the actual math in front of me now, thanks to my MO getting ahold of me this afternoon, I'm more wavering on the "have to try it" side, but I know I can't even do that until this new issue with my transfer to Pristiq is solved. I'm having a really bad bad bad reaction to this anti-depressant. Very different from any other I've ever been on. So, again the Tamox is on hold. It's almost like the Universe doesn't want me on it. IDK. It's all just very strange.

    Doing more searching tonight, since insomnia has visited again, found this page which lays out everything about Tamoxifen, and surprisingly much of this WAS NOT covered by my MO. There are (very rare) but also PERMANENT risks that can happen (but again rare) with just ONE dose and that some of the rare SEs have resulted in DEATH. Was not aware of that. AT ALL.

    Not saying it to scare myself or anyone else, but it's upsetting to me that my MO didn't inform of these things and also didn't lay out any ground work for lab surveillance, bone density scans & uterine baselines as well. I feel that if I go forward with Tamoxifen I would only do so with a MO I feel confident in and right now, not feeling so confident about mine. Think I will work on getting a 2nd opinion, at least in regards to the continuing care/screening/labs part of this treatment.

    "Monitoring Parameters

    CBC with platelets, serum calcium, LFTs; triglycerides and cholesterol (in patients with pre-existing hyperlipidemias); INR and PT (in patients on vitamin K antagonists); pregnancy test (prior to treatment in females of reproductive potential); monitor for abnormal vaginal bleeding; breast and gynecologic exams (baseline and routine), mammogram (baseline and routine); signs/symptoms of DVT (leg swelling, tenderness) or PE (shortness of breath); ophthalmic exam (if vision problem or cataracts); bone mineral density (premenopausal women)"

    Also - this nurse process pdf lays out how to approach Tamox & SEs with a patient.

    Nothing in regards to monitoring or prescreening/baselines was offered to me.

    They basically sent me off with the rx and have assumed (after reading email from them today) that I have been on it for the past 4 weeks. That alarms me a bit. Like I said, I think I need to seek a 2nd opinion.

    In any case, that's just info I found and wanted to put here if I need it later and for others who feel that information is helpful. I'd rather know all I can and make my decision based on the facts rather than just assume or guess or hope. That's just me though. :)

  • shellsatthebeach
    shellsatthebeach Member Posts: 50
    edited November 2018

    I know of at least two stage I women on the board who either stopped taxomifen or one never went on it have recurrence which became stage IV. I'm not saying this to scare you but please just be aware. Make sure you are well informed before making any decisions.

  • salamandra
    salamandra Member Posts: 735
    edited November 2018

    I don't know what you should do. I don't even know what I should do. I don't know how reliable this study us or how valid for actual clinical use. But it may be something to ask your doctor about, in terms of alternatives to tamoxifen that may help with preventing recurrence.

    This study was about how light exposure at night decreases the efficacy of tamoxifen. But it seems to me that it also implies that 'simply' (though it's not easy) completely blocking light at night and/or supplementing with melatonin can on its own have an inhibiting effect on estrogen based cancers. This could be something you could do right now.

    Also, it looks like hopefully there will be some progress on using progesterone to treat ER+/PR+ cancers. I don't know if it will be soon enough for us... But it may be something to look forward to or ask you MD about.

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited November 2018

    @ShellsattheBeach --> Thanks for sharing. I truly appreciate all views and all info. It's super important to me as I want to have the most information, facts, studies, and experience info that I can in order to make the best decision for me.

    What you state, about those recurrences becoming stage IV, is exactly what I was voicing with my Firefly Sister last night. That I do in fact think I could "handle" (a very relative loose term here!) having a recurrence of stage I, if it happens. However, as you point out, I'm very aware that many times I've read and seen online, that chances are there that it can come back advanced/mets and then what? It's a very scary thing indeed.

    That's why I want to be sure I really think about this and weigh everything before making a decision. As it is right now, I haven't decided one way or another. However, mathematically'logically it makes much more sense to take the Tamox, but from a QOL perspective it may not, I can't determine that truly I guess until the other med issues can be ironed out.

    In another holding pattern it seems.

    @Salmandra --> Thanks for the info on Melatonin and reduction of light during sleep. Fortunately for me, I've already been on Melatonin for the past 7 years, sleep in a total black-out room, and don't even allow TV in my bedroom. It's just part of my selfcare I've had to do in order to maintain and improve my other chronic health conditions throughout my life. It's nice to know that maybe that will help in some way, in addition to just improving my sleep. However, I think you're right that while it's promising to hear about info on Progesterone it's probably a ways off for us.

  • Sharla
    Sharla Member Posts: 1
    edited November 2018

    Hi Spoonie,

    This is my first post but yours spoke to me. I turned 44 three months ago and started Tamoxifen about a month ago. I did not realize how much I did not want to take it until my oncologist gave me the RX. I broke down in tears and I still feel so sad about the loss of my once whole, normal self, but really, she went away the moment I was diagnosed.

    That being said, it hasn't been that horrible so far. I do feel grateful and hopeful for the future when I swallow my pill each day.

    I too have depression and anxiety. My psychiatrist said that my meds will compensate for the possible side effects of Tamoxifen. I take Zoloft/sertraline for that.

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited November 2018

    Thanks for posting Sharla. I'm wishing you well on your journey. It's such a personal decision to make and you're right, it (and we) all change that day we're diagnosed.

    I did find something I will bringing with me to my next MO article about the ability to test for certain genetic/dna markers that can (according to this study) identify some populations of BC patients that may have a higher risk of recurrence. I'm one of those people that I want to know all I can and bring it with me to my dr and ask a billion questions. I've learned the hard way, through years of exp with my chronic illnesses, that no one else is going to fight for what we need and want, we have to do some homework ourselves.

    Study finds new clues to understand relapse in breast cancer 2018

    On another note, I saw my primary the other day. I asked her about her thoughts on getting a baseline US, bloodwork, and a bone scan before starting Tamox. She agreed with my MO that they were not needed. This drives me crazy. I want to be proactive and know what is what going in, if I take the dang drug, not wait till my uterus is full of fibroids or I turn anemic or start having breaks in my bones. Even brought up my history of increased uptake at multiple joints due to my SRA and of course there is my history of LSIL and colposcopy's....she still didn't think any of that would warrant the tests. Gaaaaahhh. So frustrated.

    But, I think I have the upper hand, if they want me to take the drug and follow treatment, I'm going to say "Hey, a little quid pro quo ok? I need to know what I have going on so we know what (if anything) changes in the months after I start putting this in my body. If you'll give me peace of mind, I'll take the drug.".

    Guess I'm about ready to start throwing a tantrum for the cause -- I've read enough of the sad stories to make this VERY VERY VERY important to me.

    Ok, sorry for ranting and rambling. Thanks for listening.

    Gonna try and sleep. Dang insmonia has been so awful this week. Wish me luck.

  • KBeee
    KBeee Member Posts: 695
    edited November 2018

    One thing to consider is your percentage ER+. If your tumor is 15% ER positive you will not derive as much benefit as someone who is 95% ER+.

    If I were you, I would make a Simple pro/con list. Ultimately you have to decide which is potentially more important quality vs quantity of life. You have to decide how much risk you are able to live with. It is not an easy decision and there is no right decision.... only the right decision for you.

    One you make your decision, have faith that it was the best decision for you, and an educated one at that. Then never second guess your decision

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited November 2018

    That makes sense to me KBee.

    I'm ER +9.5 and PR +7.4, so my MO has told me straight up that I would most likely get a 40-50% reduction in a RR. If I choose to forgo Tamox, my risk is between 28-35% of recurrence. Le Sigh. I don't like those odds, but I also don't like the idea of adding on to my current poor QOL either.

    Like you say, such not an easy decision. You're idea of a pros/cons list is something I should do. I think I lose sight of the one I have "in" my head sometimes. Better to put it on paper so I can look at the whole picture.

    I talked with my sister tonight as she was wondering what I had decided, if anything yet. I told her that I am leaning towards at least trying it but still not committed. The idea of permanent (though rare) SEs is scary, I do not like the idea of blindness, stroke, heart disease, or DVT. Surprisingly she was very supportive of my decision, saying that whatever it turns out to be, she said it has to be MY decision. Meant so much to me since she had also said that she hoped I would do all I could as long as it didn't make my life hell to live.

    I think I'm going to ask my MO's office if I can set up a phone consult with them, ask some additional questions. Not sure if I feel comfortable waiting until the middle of Dec for my next appt with her.

    Like, what are the odds that if there's a recurrence, that it's a later stage or Mets? (are there even studies on this?)

    If it happens, what are the odds for it being at least 5/10/15 years down the road?

    If there is a recurrence or a new BC, are my options the same? (Lump/Rads? BMX)

    Does RADs work again? Or is that off the table in a new dx?

    Anyway, just talking out loud. Thanks all for listening and sharing. It's so helpful to have ya'll around and this board too.

    Sending everyone some healing hugs.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited November 2018

    They generally don't like to radiate the same area twice... but it can be done if the cancer risk is great enough.

    Usually a mastectomy would be done for a local recurrence after a lumpectomy with radiation, or for a new primary in the same breast. You can typically do a lumpectomy with radiation for a new cancer in the opposite breast, because the area hasn't had previous radiation.

    I had radiation to the same area twice, but I had an unusual situation. The first time was whole breast radiation after my lumpectomy. The second time was because of my local recurrence, after my skin metastasis and chest wall resection surgery.

    As my RO pointed out, much of the tissue that had been radiated the first time (aka my breast and all my skin) was surgically removed. There was still overlap though, and my right lung got hit twice. That puts me at higher risk for radiation complications down the road. It's scary, but in my case was the best course of action, because the cancer was the bigger threat.

    From that perspective, hormone therapy to prevent recurrence may save you from other troubles in the long run. Dealing with recurrence, local or distant, is not fun no matter how you look at it. Although I did hormone therapy and had a local recurrence anyway... so as you know, there are no guarantees with this disease.

    I wish we had a crystal ball for these decisions. 🤔

    Whatever you decide, it's important to be at peace with your decision. Hugs.

  • BT39
    BT39 Member Posts: 24
    edited November 2018

    I'm trying to decide about hormone therapy as well. I'm 39, my last round of TC is Dec. 4. As such, I'll be discussing more details about endocrine therapy then. I know the suggestion is Tamoxifen initially to push me further into menopause and then add ovarian suppression shots and switch to an AI once pushed into menopause, for 5 years. I had a very small tumor (4mm), but with a high oncotype and ki-67. I'm familiar with all the research, but still feel it's pretty limited as to benefit vs. longterm risk for the late 30s/early to mid 40s population of ladies. I feel like this next decision will actually be the hardest for me! There was a lot less debate for me about mastectomy and chemo.

  • pebblesv
    pebblesv Member Posts: 486
    edited November 2018

    Spoonie - I just realized this is YOU and we're both on the Nov. radiation thread too! Hi! Let's keep one another posted, and I really appreciate the articles you linked to and plan to read them.

    I'm going to give Tamoxifen a go, but I'm super, super wary about side effects too. Right now, I'm trying to research ways to avoid side effects (if any). I just talked to a friend of mine today who works with a lot of women with bc, and he provided some reassurance that the side effects I'm most concerned about (blood clots, endometrial cancer, eye problems) were super rare, less than 1%, and on there are some foods that help reduce the risk of endometrial cancer. That said, I'm still wary about the whole thing. I'm at 20% risk of recurrence if I forego tamoxifen, 13% risk if I take it, based on the oncotype DX stats. I was hoping that tamoxifen plus added nutrition could knock down my risk of recurrence down to 7%! I heard food and exercise can go a long way to keeping bc at bay.

    BT39 - I'm 43 and have the same concerns, these side effects are not small deals for our age (late 30's / early 40's). I think I have to give it a try as hormone therapy is my ticket out of chemo (I have a low oncotype) BUT I'm trying to research ways to AVOID the side effects, if any.

    Sharla - we're similar situations / ages too.

    Shall we keep one another posted on our decisions and so forth re: tamoxifen?

  • dtad
    dtad Member Posts: 771
    edited November 2018

    Shellsatthebeach...IMO its not helpful to mention anecdotal cases. There are also lots of women on the Stage 4 forum who did anti hormone therapy. It's a very personal decision. We all have different circumstances that have to be considered when making treatment decisions. My advice is to do your homework. Some do well on anti hormone therapy, and some do not. It has ben shown to reduce recurrence rates by 40-50 percent. We would all be taking it if we all could tolerate it. Our bodies, our decision! I support and respect all individual decisions made.

  • vl22
    vl22 Member Posts: 471
    edited November 2018

    BT39 - my advice to you would be to not start Tamoxifen until you feel recovered from chemo. Starting Tamoxifen after chemo is an entirely different situation.

    I was ok through chemo, but after it was over I felt horrible- the Taxol gave me terrible bone and muscle pain. It lasted throughout radiation, which obviously compounded the problem, and then right after rads I started Tamoxifen.

    I was definitely not physically or mentally ready. I think if I had waited until my body had recovered a bit more, I would not be having as many issues.