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Is Tamoxifen working? How do we know?

15 REPLIES 15
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Re: Is Tamoxifen working? How do we know?

Hiya shablah my consultant said take it and if it really compromises you then you can stop. The survival rates with or without taking tamoxifen are surprisingly similar for someone in my situation. 

I don't want to tempt fate and expect the worst. But I'm in a quandary still

Hope you're OK 

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Re: Is Tamoxifen working? How do we know?

Hi again Delly!

 

Thank you. I'm having 15 sessions starting Monday. Hope you're well xx

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Re: Is Tamoxifen working? How do we know?

Hi again Shablah

 

I so hope all goes well for you with your Rads. How long a course do you need.

 

Lots of love Delly bonkers Smiley LOL !!! Ha ha xxxxxxx

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Re: Is Tamoxifen working? How do we know?

Hi Lovemama

 

Sorry to hear you have secondaries. I'm sure it's very easy to forget to take your medication after taking it for so long.  Thank you for sharing your story with us. Wishing you all the best xx

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Re: Is Tamoxifen working? How do we know?

Hi Rumred

 

I had a conversation with my oncologist about tamoxifen and she said the alternative would be weekly injections to the stomach which are not good for us over a long period of time.

 

I've been taking tamoxifen for 12 days now. Admittedly like you I was in two minds whether to take it or not but if it helps protect me even a bit, then I'm for it. So I'm giving it a go. So far it hasn't been too bad. I am quite achey but that's all so far. I also deliberately take it at dinner time, then I think to myself I will be able to sleep off any side effects, which I know is rubbish but helps me psychologically. I think we are scared stupid by the side effects because we listen and take note of all the horror stories but every drug comes with side effect warnings and looking at it as being the same as every other drug makes it slightly easier. I think because BC is a really mental and emotionally draining thing we go through (to say the least),  we are already in a bad shaky place then we get told to take this drug that will alter our hormones, it's really quite frightening.  

 

I'm starting radiotherapy Monday coming. My oncologist said the sooner we take tam the better but left it up to me if I wanted to start before or after rad's but as she gave me the prescription I decided to take it, also I'm thinking that as I will be going to the cancer centre every day if I do suddenly get a major problem or severe side effects I can just speak to one of the oncologists/doctors then and there at the cancer centre and that also helps me cope mentally. I'd be interested to know what you think about my take on it Xx

 

 

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Re: Is Tamoxifen working? How do we know?

My first diagnosis was in 2011 when 43 yo. My period stopped permanently after 2nd cycle of chemo. My onco told me to take tamoxifen for 10 years. In the first couple years, I had 1 time acid reflux (usually happened when I was sleeping). It was resolved not sure bcoz of the prescription medication or bcoz I changed to take tamoxifen from before bed to morning. I had 4 times UTI (never happened before and touch wood, not after up to now)  and quite strange, all happened  in about 6 months gap. I had 1 time uncontrolled pee for about few hours and this time I didn't go to see any doctors. Basically,  I think I am quite lucky, the SE is very minimal, no pain, no hot flushes. After 3-4 years on Taxmoxifen, my hospital discharged me. Since then, I started to take the pills irregularly (avg 2-3 times a week).

My SBC was dxed in Oct 18. 3 months before dx,  I completely stopped tamoxifen myself and eventually started high dose bee propolis. At my 1st appointment with onco, I told her all these and she agreed bee propolis, not taking tamo. regularly all might contributed to my SBC. In the 2nd appointment, my onco reminded me to stop taking Tamoxifen, she said it was not working. I asked "but.... my hair was thinned (for years) when I was taking the tamoxifen (my hair started to grow thicker after I stopped tamoxifen)". She said different cells responded differently. Though no evidence, I regretted so much for stopping myself. My onco comforted me saying don't blame yourself. It just happened and was not linked to it. However, when I took the estrogen test before started Letrozole, my estrogen level was HIGH.  

 

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Re: Is Tamoxifen working? How do we know?

Hi shablah I'm due to have Radiotherapy and start tamoxifen soon. I too am concerned about the side effects and my quality of life. I asked my consultant about alternatives and she used the Predict tool mentioned below. It makes interesting reading. Basically tamoxifen offers a slightly better chance of survival after 5 10 and 15 years. If the risks of not taking it were greater it'd be easier to start but these figures, which are based on your specific situation, are making me stay on the fence.

I got this done by speaking to the breast nurse linked to me before my appointment, so she could sort it and we could discuss it in person. 

 

It's incredibly hard making these decisions, especially if you feel well and live on your own. It seems like the vast majority go with what the surgeon says without info about them as an individual. Understandable but not necessarily right. Ive not found any discussion about options (I'm not including quackery) since I got my diagnosis. 

I hope you get some answers and peace with it

 

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Re: Is Tamoxifen working? How do we know?

Sorry I just read this back the drug is Propanalol NOT Propanadol X

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Re: Is Tamoxifen working? How do we know?

Hi Seabreeze 

 

Thank you for all the info. I will be questioning the next dkxyir I get to see. I have been taking Tamoxifen for 12 days now and feeling a bit achy, but I have tried to ignore it and not be beaten down by a few aches and pains.

 

I read yesterday on the Internet a study/trial they did in the US about also using Propanadol along side Tamoxifen. The research only ended on 31st Dec 2019 so no results available yet but they said it likely could be used as another protective source, hopefully something will come of it.

 

Glad you are doing well, I'm starting radiotheraphy on Monday. I will ask sone questions and let you know what was said though I expect I won't be given much info only what I already know  xx

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Re: Is Tamoxifen working? How do we know?

Hi Delly 

 

Thanks how cheerful!! Lol, only joking that's how it is for done I guess.

 

Glad you are doing well now even if you are a bit bonkers nowadays. 😉😂Thank you for your reply and keep posting your sane madness 🤪 xx

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Re: Is Tamoxifen working? How do we know?

Hi Shablah,

 

Oestrogen positive breast cancers effectively feed off oestrogen. The Tamoxifen acts as an oestrogen blocker in the breast tissue, providing some protection against the oestrogen your body produces. 

 

You can check how taking Tamoxifen statistically increases survival over a 5, 10 and 15 year period for someone of your age, size of lump, number of nodes involved (if any), and whether oestrogen positive etc on NHS predict online. Not everyone feels comfortable looking at such figures, so it is a personal choice. https://breast.predict.nhs.uk/  Alternatively you could ask your oncologist to show or talk you through the statistics. They are averages, and so other personal health factors need to be considered too.

 

Recently there have been some studies done on taking Tamoxifen for 10 years rather than 5, and the results indicate that taking Tamoxifen for 10 years actually provides some degree of protection for a number of years beyond that. I asked my oncologist about further reading on this, and again, not for everyone but the ATLAS study shows the statistics for the extended period. Reliable article in the Lancet, https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)31003-6/fulltext 

 

From a personal perspective, I certainly wasn't relishing the thought of taking it...did get some side affects, including bad hot flashes. Found sage capsules helped for about 18 months, then they got worse again before eventually easing off a tad.

 

Three years after initial diagnosis I had a secondary scare....turned out to be old fractured ribs...but during that scare period I realised how if I hadn't have taken the Tamo, I would have felt like I'd increased my chances of a recurrence and been kicking myself! Thankfully I didn't have to kick myself since I'd taken Tamo and then thankfully got the good news of old fractured ribs - hurrah! Not secondaries. 

 

So roll on to the 5 year Tamo point, planning a free-the-Tamo-one party in my mind.....and then the onc said, oh, research now indicates benefits of taking it for 10 years. So I have now shifted my free the Tamo one party to the 10 year point!

 

Basically bc can be sneaky. Bc cells can hide out dormant in your bones and then become active years later. Tamoxifen helps reduce the chances of any local recurrence and any hiding dormant cells getting up to no good! So, while there are no guarantees, and it is a personal decision, please do consider taking it for the above reasons and speak to your oncologist if you have doubts or unanswered questions. The "what if" scenario is also a good personal guide...none of us want to look back and wish we'd done something which may have made a difference long term...

 

Really hope the above helps you decide what is right for you,

 

Seabreeze (5 years Tamo and counting!)       

 

 

 

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Re: Is Tamoxifen working? How do we know?

So sorry to put possibly put a spanner in the works, Shablah. But I'm just speaking from experience of a friend of my Mums. I'm hesitant to post such things, as they're likely to upset/scare some peoples balance and trust in such. But at the same time, are spoken in direct experience.

My Mums BF was on Tamox for 10 yrs, but died from extensive secondaries shortly after finishing Tamox. Were they already there and progressing whilst on it, but just not checked due to being on Tamox so presumptions were all okay?? Symptoms didn't show until a year after finishing, and then faar too developed to treat (a "major" brain tumour, plus major bone and liver 2ndaries). Or did they just very rapidly develop once Tamox ended(?) through a year later?, to the extent they did/were??

 

Afraid it affected me taking Tamox, it exacerbating my existing depression, and then also the above example. Both my tumours were strongly Oestrogen +ve - two diff type primaries a year apart. I'm now 14 yrs "clear" from the both without Tamox. Perhaps both were caught soon enough to have spread? I don't yet know, as we "never" fully quite know, do we? We can't see inside our own bodies, and check every cell, so It can be lying unknown.

So sorry to be such a -ve,  but just being honest. Doesn't mean it'll be the same for you. Does make you wonder though? Guess, at the end of the day, once given all the info, it's our own decision whether to take, or not. 

Delly xxxx

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Re: Is Tamoxifen working? How do we know?

Hi Shablah

 

My understanding is that HT reduces the chances of hormone-positive cancer cells developing again. I had 2 tumours, one hormone negative (to think I could have been spared these side effects!) but the other, the spreader to my lymph nodes, was highest score (8) hormone positive. I’ve not seen HT as any guarantee against recurrence, just some additional prevention work going on. So I’m not sure what a test could reveal. Its success is measured by the absence of recurrence so we’d only know if it failed (we got breast cancer again). I wonder if there is a better test than the mammogram (which failed me) to say for definite that we don’t have any signs of breast cancer. Hmmm. I wonder if this HT thing is a question you might post in Ask The Nurses? I’d be interested in the answer too. 

 

So sorry to have added to your burden by showing that it goes on and on. I’m 16 months down the line now and hopefully getting my release papers on Friday (but I suspect not because of the effects of this HT lol). But at least we know we are being monitored closely, which is some consolation. It’s certainly been an eye-opener!

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Re: Is Tamoxifen working? How do we know?

Hi Jaybro

 

Thank you for all the info.

 

Yes I did think that some day this would be over but it just all seems never ending doesn't it. I had no idea before I was diagnosed myself that this is a lifelong worry. 

 

This is all very new for me having only been diagnosed at the beginning of Dec and it seems with the end of each stage of treatment we get 3 minutes of relief then the worrying about the next treatment you have to have starts.

 

I would have thought they offer us a blood test that could tell if HT is working or not. I'm not sure why I thought that, it wasn't something I thought to ask at my last appointment with my oncologist. Surely there must be some test or other that can give us some reassurance?  Or at least the opportunity to try another HT if we are not protected fully by the one we are on? I can't believe in this day and age with all thats available in medicine they can't tell us if we are protected properly or not. But like I said this is all very new to me, I still know very little,  sometimes by choice. May be there is a test, I just don't know about it. I will be asking the next doctor I see lots of questions. X

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Re: Is Tamoxifen working? How do we know?

Hi Shablah

 

Your best bet is to ask your breastcare team or oncologist to direct you to the research (Google is way too unreliable) or better still, show yu and talk you through it. I assume oncologists have access to data that’s presented in visual form, showing the statistical difference any particular treatment can make - but related to your specific cancer. Certainly mine did when he needed to talk me into chemotherapy and it worked.

 

I can understand your wanting to know. Is the misery worth it? The last time I saw my latest oncologist, she wanted to take me off anastrozole because of the side effects. This was maybe 10 minutes after I’d read an article in my reliable newspaper about research showing that anastrozole is by far the most effective HT for post-menopausal women. The statistics cited were convincing. I decided to soldier on but I’m sometimes in agony and really wonder how much difference it’s going to make - I’m seeing her Friday and I know she’ll suggest coming off it again. Aaaargh. Decisions.

 

Basically, we don’t KNOW HT works because nothing is definite. We are being given a better chance with HT but there are still no guarantees. It will work for one woman but not for another. Did you, like me, assume that once the big treatments were over, that was it??

 

Best of luck x

 

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Is Tamoxifen working? How do we know?

Hi

 

Can anyone tell me if there is a way we can know for sure if tamoxifen is working and protecting us or how we would know if it is not working ?