I don’t know about you, but to me the list of side effects from taking Tamoxifen just seems to keep on racking up and up.
Up until now I’ve avoided reading the list of POTENTIAL side effects on the packet, for fear of attributing every ache, pain and niggle to it, but it’s time to have a proper look.
Tamoxifen and Anxiety
Anxiety, and depression, is given as a side effect on the leaflet of my packet, but I’m not at all clear what normal anxiety is, which may sound a bit loopy. The trouble is that after breast cancer there is stuff to worry about. Fears about recurrence, problems with the medication, fears about it popping up somewhere else. EEK.
I’ve also read about tamoxifen takers experiencing panic attacks – which is different to a general feeling of anxiety.
Right now my womb is being looked into and so I’m on tenterhooks whilst all that’s happening. So is the churning in my stomach and the mild panic attacks over really inconsequential rubbish could be happening because of that, or is the anxiety genuinely out of proportion to the problem, and merely a chemical manifestation of the Tamoxifen? Who knows.
However, if you are dealing with anxiety, it can be useful to understand that it might arise from the Tamoxifen. If the anxiety is not your fault, or out of your control, this means you can stop beating yourself up and trying to resolve it from within, and focus your energy on just dealing with the side effect, because you’re off the hook as far as being the cause goes.
Is The Anxiety Due To A Menopausal ‘Side Effect’ Caused By Taking Tamoxifen?
Another suggestion is that the anxiety is a hormonal, menopausal type response. In other words, taking Tamoxifen creates a menopausal situation in your body, and any anxiety is due to the menopause. However, do be careful if you decide to take stuff to help, because many of the supplements to help with the effects of the menopause are contraindicated for anyone taking tamoxifen.
Do Doctors And Onco’s Acknowledge A Link Between Tamoxifen And Anxiety?
Doctors are still people and so have differing opinions and prejudices. When I asked my pharmacist if Tamoxifen was linked to anxiety she told me a definite NO. When a new chemist shop opened in our village and I went to pick up my prescription, that pharmacist told me it was a well known side effect.
Whilst some patients report their doctor immediately made the link between Tamoxifen and anxiety, others were told it didn’t exist and sent away. Given the subjective nature of anxiety, this is perhaps understandable, although it doesn’t help much when you’re trying to deal with it.
What Could Anxiety Due To Tamoxifen Feel Like?
- Over-reacting to minor disturbances or being easily startled. I believe this can sneak up on you and you may need to delve deep and think back to before all of this started. If you are jumping out of your skin just because the dog barks or the kids are shouting, would you have reacted like that before?
- A churning of adrenalin which won’t subside
- Heart palpitations
- Feeling light headed and dizzy
- Muscle aches and pains
- Feeling too hot or cold
- A sense of foreboding – there’s something wrong@! But goodness knows what.
- Worrying about trivia. By trivia I mean things like the bank wrongly applying charges to your account. It’s usually sorted out, it’s a part of life and shouldn’t induce fear or mild panic.
Basically – are you sweating the small stuff?
Unfortunately there doesn’t appear to be a definitive answer about how to distinguish justified anxiety, which understandably takes over from time to time, from a tamoxifen induced anxiety. Neither is there a clear solution, although the following ideas did come up in my research:
- Take the tamoxifen at night so that some of the symptoms have dissipated by the morning
- Take 1mg of Diazepam to relieve the symptoms of anxiety
- Lexapro, Effexor and Celexa are antidepressant type drugs which can be taken with Tamoxifen. There were a number of posters on the forums who reported Lexapro helped them
- Rescue Remedy is one of the Bach Flower Remedies. This particular one is for comfort and reassurance and there’s also a night-time formula
- Split the dose in two and take it in the morning and the evening, instead of all in one go.
- See a Healer or Reiki therapist to help you deal with any negative energy which could, apparently, make it difficult for the positive thoughts to penetrate
- Use candles (not like that!). Turn off the lights, light some candles and have a long soak in the bath, or relax in bed. A glass or two of wine helps as well, but the soothing light of the candles are the key.
- Relax your muscles, especially around the eyes. This isn’t as easy as it sounds because tense muscles is a habit which needs to be reformed into relaxed muscles. Eye muscles use loads of energy which makes the effort of relaxing worthwhile – if you get my drift.
WARNING: The above is not medical advice and you should always check with your doctor before you do any of these. If your doctor is prescribing something to help you with the anxiety, do remind them that you’re taking tamoxifen.
I bet you thought that one packet of Tamoxifen was much the same as the next. So did I, and it seems a reasonable assumption.
However, I was at a pamper day laid on by the hospital for breast cancer patients when I overheard two women talking about the side effects of Tamoxifen.
The basic idea is that different brands of Tamoxifen might suit different people. New one on me I must say.
This means that if you are taking Tamoxifen and are suffering from what I will call the more immediate side effects such as nausea and lady parts that feel like a couple of bits of sandpaper scraping together in your thong, that you might be better off on another brand.
If you’re getting on fine with the Tamoxifen you’re taking right now, then you may find this information useful in case your chemist decides to change supplier.
When I first heard this I thought it sounded like a pile of old hooey, but I get on fine with my Tamoxifen and so when the box changed colour I was mildly concerned, but expected the pharmacist to poo poo my worries. However, she didn’t, and not only did she agree that women can react differently to the various brands, it seems to be well known amongst pharmacists. Why do you think the doctors don’t say anything about it when patients are struggling with the side effects?
My local pharmacist (in the Hoo St Werburgh Chemist on Main Road in case you’re close by) was very helpful and went on to explain that the supply companies will try for the most cost effective drug, or the ones which are simply in stock. If you need a particular brand, or want to try a new brand, then just ask and it can be sorted on a special order. If they won’t do it then change pharmacists.
I have taken two brands of Tamoxifen and haven’t suffered nausea with either and they are made by Wockhardt UK Limited and MA Holder APS Limited.
Oh and for those of you fed up with a sandpaper fanny, this lovely pharmacist also recommended a product called SYLK. You can buy it at boots and Superdrug for about £10 (bit cheaper on Amazon) and even get it on prescription from your GP if you ask real nice, and it’s all natural ingredients extracted from Kiwi fruits. Give it a go.
One of the side effects of taking Tamoxifen is, apparently, an increased risk of developing Uterine Cancer. DOH! Please note that I am, along with millions of other women, being prescribed Tamoxifen as a preventative measure against a further outbreak of breast cancer due to stroppy and over–sensitive oestrogen receptors. Mmmm.
Now as it happens, I have a scientific background, and so I do understand about the balance of probabilities and all that stuff. However, that is on an intellectual level, and it feels very different when it’s your body.
I was given a treatment plan almost as soon as I was diagnosed, so why did I decide on the very day I was due to swallow my first tamoxifen pill that I needed to dig a bit deeper into the side effects? I can’t say it’s because I wasn’t told about them sooner. Hospitals today are peeing their scrubs with the fear that you’re going to sue them, and so they tell you about potential side effects every 15 minutes or so. And then they get you to sign lots of bits of paper to confirm that, a) they have told you the side effects, and b) you have previously signed other bits of paper to confirm you have been told about the side effects. I was told alright. I just decided not to listen.
When I first discovered that I probably wasn’t going to die from breast cancer in the next five years, all due to my gold star treatment (as the hospital described it), I was so thrilled that I accepted everything that came my way in the form of surgery, therapy and drugs. If you have been in a similar situation, then you possibly understand how it felt, if not, then this is the best way that I can describe it…Have you ever been really hungry? I don’t mean that you missed your afternoon biscuit, but so hungry that you eat the first thing you can get your chops around. A tin of cold soup. Scrambled egg on porridge. Whatever. The point is that your basic instinct for survival takes over, and you eat what you need to keep going. You don’t think about calories, taste or additives. You’re too hungry to make an informed decision. Well, that’s how I felt when I was given the survival rates if I took Tamoxifen. Just bring it on…Get the pill popper reader, I’m in to land.
So here I am one day after my radiotherapy has finished and what is left of my left boob resembles a poached, red policeman’s helmet (the old-fashioned sort) with my cashed prescription of Tamoxifen in front of me on the kitchen table. As I understand it, to get 100% effectiveness (at blocking the effects of oestrogen, not growing uterine cancer) then I have to take the Tamoxifen bombette today.
What to do?
Well, I’ll tell you now that I did decide to take the Tamoxifen, but I’m not sure I can give a full answer as to why. I just went with my gut. It felt like the right thing to do and it was less scary than not taking it. It seemed tried and tested, there were figures that backed up results and it made sense on a very basic level. My cancer was linked to oestrogen and Tamoxifen blocks oestrogen. The threat of cancer of the womb was a way off, and as my doctor put it (but I’m sure would never ever admit they said this) ‘we’ll keep an eye on it and we can always whip your womb out’ – how reassuring, but it did the job.
I wish I could give you a yes or no answer about what you should do but no-one can do that. Best thing is to listen to listen to your doctor, speak to some other people who have taken it (not your friends and family because they have a bias obviousy) and go with your gut.