***IMPORTANT NOTE – I am not a medical professional. This is all from my experience and my opinions. Please speak to your own doctors for proper advice.***
When I was first diagnosed with breast cancer there were multiple treatments thrown around. My doctor mentioned that depending on the type of cancer I had I would probably be on a hormone blocker, and since I am pre-menopausal, it would probably be Tamoxifen.
As it turns out my cancer was hormone receptive, both estrogen and progesterone, so it was a no-brainer that I would have to take Tamoxifen.
Throughout this whole breast cancer journey my policy has been to not google too much. In fact, with each step I have tried to wait until my doctor had gone over all the options before I spent some time researching them myself. The exceptions to this were my use of the Breast Cancer Network Australia and the Cancer Council website, both of whom are reliable sources in Australia.
My one other source of information is from the source itself. I am in a couple of breast cancer support groups on Facebook. In these group there are thousands of others going through the various stages of breast cancer, from newly diagnosed to years cancer free!
These groups are a fantastic resource, for information, reassurance and support, 24/7. The women range from young to old, with every type of breast cancer, and every side effect or thing that could go wrong, so there is a huge amount of wisdom to draw from.
The down side is that they have every side effect or thing that could go wrong! This is a good thing for information, but it can be really scary for the newbies who regularly see the downsides of the treatment.
I do not want to minimise the side effects, for some women they truly are debilitating, but in these groups it often seems like everyone has side effects because there are many posts asking for suggestions for combatting them. In reality that is likely not the case because there is no reason to put up a post saying “I have no side effects”.
So while I had tried not to focus on it, I had seen many posts talking about the side effects of Tamoxifen and that they were sometimes so bad that women were sometimes choosing the higher risk of their breast cancer coming back over taking it.
When I was told I would definitely be taking it for the next 5-10 years, one thing my doctor said really stuck in my mind. He told me that Tamoxifen has saved more lives in the last 20 years than any other single breast cancer treatment!
Now, I couldn’t swear that is actually the case, but he is a medical professional that often writes papers and does research into breast cancer, so even if he is not entirely correct in this claim I think there must be a basis for it somewhere.
So in my mind this makes taking Tamoxifen for my type of cancer pretty important. There was absolutely no doubt in my mind that I was going to take it.
I did go home and google it then though. The list of side effect really is scary. From breastcancer.org, the most common side effects of Tamoxifen are:
- increased tumour or bone pain
- hot flashes
- mood swings
- hair thinning
- dry skin
- loss of libido
Doesn’t sound like fun does it? The website also talks about even more less common side effects that should send you straight to the emergency room! Tamoxifen is even listed as a known carcinogen on the American Cancer Society website because one of the very rare side effects is possible uterine cancer.
But I kept my resolve and filled my prescription straight away. The way I looked at it, the sooner I started taking these tablets, the sooner I could stop taking them in the future.
I took my first dose on Christmas Eve 2019. I figured it would be easy to remember my Tamoxifen anniversary that way! Then I sat back and waited for the side effects to kick in.
I’m now about five and a half months down the track, and I am over the moon to say I really don’t have any side effects at all. A handful of times I have woken up in the middle of the night and have been boiling hot! Here come the hot flashes I thought! But then I remember that this has happened to me for years and I couldn’t be 100% sure if it is a side effect of Tamoxifen.
The way Tamoxifen works is kind of interesting. There are plenty of websites that explain it quite well, some are really technical, others simple. I like this simple quote from the American Cancer Society:
“This drug blocks estrogen receptors on breast cancer cells. It stops estrogen from connecting to the cancer cells and telling them to grow and divide. While tamoxifen acts like an anti-estrogen in breast cells, it acts like an estrogen in other tissues, like the uterus and the bones.”
So this means Tamoxifen does not stop your body from producing estrogen, it instead works on the cancer cells to stop them being able to use the estrogen as food!
For some pre-menopausal women taking Tamoxifen puts them straight into a kind of medicine-induced menopause. Many of the side effects are the same so it’s hard to tell the difference. For me though, the one side effect I was looking forward to was my period stopping! No such luck. It still appears each month like clockwork. I’m still hoping that it might go away soon!
While everything has gone very well for me, I can’t relax quite yet. I have seen reports in those Facebook groups I mentioned above that it’s not entirely uncommon for side effects to kick in months or even years after starting taking Tamoxifen.
In the meantime, in my amateur opinion, I would recommend to everyone who has been told by their doctors to take Tamoxifen to at least give it a go! Learn about the side effects, but realise that not everyone gets them. You just might be one of the lucky ones!
Some tips that seem to help me and I’ve read help others. I hope they might help you too
- If you are having side effects, try changing brands of Tamoxifen. Different brands work differently sometimes. While the main ingredients are the same, the “additives” are not, and they can make side effects worse.
- Change the time of day you take the tablet. Some people have different results when they switch from morning to night or vice versa
- Exercise regularly, even if only a walk each day. This seems to help with aching bones
- Stop drinking, or cut back on, alcohol. Some people report much worse side effects if they have been drinking.
- Try taking Magnesium – of course check with your doctor first that it is okay.
UPDATE – It’s now twelve months since I started taking Tamoxifen so I thought I would pop back in and give a a quick update. Honestly, not much has changed! I still don’t have any significant side effects.
Those hot flashes (if that even was what they were) have completely stopped. I think it was just me overheating myself while sleeping, which wouldn’t surprise me. I love my warm pjs and the weight of lots of blankets over me.
I’ve noticed a few other things that may be accentuated by Tamoxifen, but I can’t swear that it has caused them. I have seen other people talk about these though, so I am wondering if it has been at least a contributing factor. None of these are bad enough to affect my lifestyle, but I wanted to add them here just in case others are experiencing the same or worse.
I’m finding my eyesight is deteriorating – but I am in my late forties and it’s about now that most people need reading glasses with or without Tamoxifen!
I have a slight ringing in my ears. I notice lots of people say they experience tinnitus while on Tamoxifen, and it goes away once they stop, so I am hoping this will be the case for me too, although I really only notice it if I’m in a quiet room.
The most annoying for me is that I seem to get really dry lips about once a month. So dry that they feel like they have been burnt, and after a few days they go hard and peel off like sunburn. Mostly it just looks terrible. Again, I’ve alway suffered from dry lips, this has just taken it to another level. Tamoxifen is known to be “drying”, so I just have to work on drinking enough water to make sure I stay hydrated I think.
ANOTHER UPDATE – I’m now at the two year mark of taking Tamoxifen and thought it appropriate to pop back in. I am still happy to report I am mostly side-effect free, and do not find that Tamoxifen is affecting my day to day life.
I’ve not really had the dry lips this year like I did last year, which was nice, because they were awful for a few days each time it happened.
The biggest change over the year is that my period has become intermittent. I’ll have it for a few months, then it will stop for a few months. This is probably not a Tamoxifen thing, but a normal menopause thing – after all, I’m now 48.
What I have noticed though, is that during those months where I have my period, I am more likely to have a hot flash during the night. It always happens after I wake up naturally and get up, usually to go to the toilet or get a drink. I get back into bed and will all of a sudden feel really hot for a couple of minutes. No sweating, thankfully, and it doesn’t last for long, so sounds minor compared to what others describe.
But during those months when my period is no where to be seen, the hot flashes also disappear. This seems kinda weird to me, but I’m not complaining.
The only other thing that is likely a Tamoxifen side effect is I am noticing I get fatigued now. I’ve always been really active and able to push through tiredness, but the last six months I have hit the wall a couple of times and have really needed to rest. Each time was after doing things that made other people say “are you surprised you’re tired? Look what you’ve been doing!” Clearly I need to be more conscious of this and learn to manage it better.
All in all, I’m glad to have ticked off another year without too many issues.
Two years done, three years to go. I am hoping that the side effects stay just like they are!
Want to read more of my story? Here are some of the key posts
- Lumpectomy and Finally the Results
- My Bilateral Mastectomy with Tissue Expanders
- Exchange Surgery – From Expanders to Implants
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Thank you. I’ve subscribed can’t wait to read more of your journey. I was diagnosed in January 2020.
Thanks Julie. Good luck with your treatment and recovery 🙂
Hello my pink sister, I was also diagnosed January 2020.
Thank you so much. I was diagnosed last week and down the rabbit hole of internet searches and Facebook groups. Your photos give me hope to know I may someday have beautiful breasts again after surgery. And I was considering declining Tamoxifen based on what I had read on other sites but your points again give me hope. I never comment on blogs but yours moved me and I feel reassured by reading about your experience.
Thanks so much Kristi, the whole purpose of my blog is to help people like you. It gives this whole experience a little meaning and some positivity to it. I really hope you do try Tamoxifen. Even if you don’t stick with it, at least you will know you gave it a go. In my mind I’m not sure I could have lived with myself if I had a recurrence and had declined Tamoxifen without trying it. Good luck with your treatment 🙂
Is there any research about tinnitus and tamoxifen? It’s making me nuts… oncologist says there is no connection. ENT says there is nothing wrong. Ty so much, your journey is such an inspiration.
Thanks Lottie. I’ve not come across any research, but I hear it is quite common. Mine is mild, but I know it can be debilitating (My f-i-l has it from being a Vietnam Veteren and it drives him nuts!) I hope you get some answers, and relief>
Hi I’ve just finished chemo and radiotherapy now taking Tamoxifen I’ve got hot flushes, I’ve enjoyed reading the information you’ve given thanks 🙏
Thanks Jenny. I am glad to be able to help others by sharing 🙂
Thank you for sharing your journey. I’m just over a year out on my own journey and just stumbled across your blog now. I too take Tamoxifen and struggled with the decision but like you the side effects haven’t been bad. Your story and positivity gives me hope that Things will not get worse xx you’re inspiring and really helping others. Thank you!
Thank you for your kind words Narelle. Being able to help others has made this all so much easier for more. Good luck 🙂
I have enjoyed following your journey and am now down the track 9 months in. I have had a few side effects namely diarrhea after my first chemo for 18 days I had taken to my bed after spending 10 days in hospital and losing 10kilos I stopped my chemo on 20th May 22 mainly I’d just had enough and wanted a break I also had my breast and 16 lymph nodes taken I am now in recovery mode and enjoying life again I had cancer in my right breast but it is not curable I’m on medication for the rest of my life but will use this second chance to put my life back together after 6 months of gruelling chemo
Thanks for sharing your story Judy. It certainly is a gruelling thing to go through. Glad to hear you are recovering and getting on with life now. Take care.
Thanks for sharing your journey. I have been on tamoxifen for a year now and the hot flashes have settled, initially they were like clock work 3 minutes after caffeine or a sugar hit and then 2-3 times overnight. I cut down the sweets and changed to peppermint tea at work and slept in a T shirt and cardigan for quick relief. My oncologist told me tamoxifen is doing more for my hormone positive BC reoccurrence than the chemo and radio did. I also take abemaciclib for two years now that has some side effects!
Hi Kristy, so glad to hear the hot flashes have settled. They are much more bearable when we believe in their effects. Good luck 🙂
I was also prescribed tamoxifen but each dosage made me really sick, almost like a terrible hangover the next day. I’m curious as to why you took it if you had a mastectomy. If it targets breast cancer cells, why did you need it? I’m considering a prophylactic mastectomy because I am so against taking the medication, and I can’t keep up the every-6-month screening forever.
Even a double mastectomy still leaves some breast tissue no matter how careful the doctor is trying to get rid of it all, so there is always a risk of the cancer coming back in those tiny areas. A DMX is never a guarantee of no recurrence. It does drop the percentage of risk though. Taking Tamoxifen drops that percentage again – usually by about 50%. Taking Tamoxifen is not reliant on whether or not you have had a DMX, it’s a completely different way of stopping the cancer returning.