I had a lumpectomy in January 2013 followed by 33 radiation treatments and I started taking tamoxifen on April 6th. I have some concerns about the side effects of the tamoxifen.
Hi crystalewing1
I’ve put for you below the link to BCC’s publication for tamoxifen, if you would like to talk to someone please do give our helpline a ring 0808 800 6000 lines are open Mon-Fri 9-5 and Sat 10-2
www2.breastcancercare.org.uk/publications/treatment-side-effects/tamoxifen-bcc20
Take care,
Jo, Facilitator
Hi Crystalewing1
I am sorry you have had to join this club no-one wants to join, but you will get great support on here.
You say you are concerned about Tamoxifen side effects, but I’m not exactly sure in what way. Please feel free to ignore anything I say that doesn’t fit!
Firstly, all drugs have side effects - if you look at the leaflet that comes with a apck of paracetamol or ibuprofen they there will be a list of effects. Most people don’t read these because they don’t even think about the risks, just the benefits. With Tamoxifen and other cancer drugs it’s different because we are told about possible side effects and are already more cautious/anxious.
Secondly, most people who take Tamoxifen will have few or no side effects, and/or they will soon disappear. On sites like this one you will see posts from the people unlucky enough to have the side effects to a degree that they need to do soemthing about it. If you are unlucky enough to have severe side effects, all is not lost, most of them can be controlled or overcome either by taking a different brand of Tamoxifen or small doses of other drugs. Of course they have their own potential side effects, but can make a huge difference.
Lastly, for me, and as someone who has a lot of Tamoxifen side effects, the answer to the question “would I rather live with the side effects (or possibiltiy of them) or take the (increased) risk of my cnacer coming back” is a no-brainer - I’ll take the Tamoxifen every time! My rule of thumb is always “if I decide X and the cancer comes back, will I wish I’d done Y instead?”
You won’t know if you are unlucky enough to experience side effects unless/until you take Tamoxifen, and you won’t know if they are severe/long lasting unless you take it for a while. Why not give it a go for a few months, keep in contact with your GP or BCN about side effects if you get them, and hopefully you will be fine.
Being at the end of ‘active treatment’ is a strange and tough place to be, but you’ll get there. All good wishes.
Crystalwing-I’m not surprised you have concerns. I do to. The list of side effects on the leaflet that comes with the packet is pretty scary. The difference with tamoxifen (compared say to paracetamol etc) is that we have to take Tamoxifen for 5 years! I have been reluctantly taking mine for 2 months and there have been side effects e.g hot flushes, which are bearable. I’ve found it affects my ability to sleep soundly, which is a pain! Unfortunately, I’ve encountered many woman who have cancer come back so am now resigned to taking this tablet to improve my odds. However if my quality of life is dramatically affected by it then I’ll stop.
Thank you for responding to my post RevCat. I agree with you on taking the tamoxifen, I’ve been taking it now for 2 months and Im starting to have some out of the ordinary monthly periods. Im 45 years old and have always been like clockwork every 28 days but this month Im having another period just 15 days later. I’ve also had quite a bit of pressure in my lower abdomen for the last month or so. I called my medical oncology doctor who prescribed the tamoxifen and they said to wait 3 more days and if Im still having my period to call and they will set up an appointment with my OB/GYN doctors. They said it could just be that im starting the menopause stages. Just worries me that everything had been going along as usual and now since I started the tamoxifen things are changing and with one of the side effects being that it can cause uterine cancer Im just overly paranoid about it. ill see how the next couple days go and go from there. thank you for the kind words and support, this sight has been a wonderful place for information and encouraging words.
Maire, sounds like you and I have both just begun our journey down the 5 year path. I’ve had night sweats but other than that I sleep okay. the first couple of weeks i had horrible nightmares which kept me from getting much sleep but they finally stopped thank goodness! I know the tamoxifen is to prevent the breast cancer from coming back but im worried about it causing uterine cancer. my mother had uterine cancer at age 28 and a hysterectomy, and my family tree is full of different cancers. I just wish I had the insight to know if my taking this drug was going to help me or in the end cause me more problems. I just need to get to a point where Im not freaked out by every little change that goes on. ive never been one to worry about aches or pains and always used the “wait and see if it gets better” theory, i think this way of thinking is now a part of the past unfortunately. I hope your able to overcome your sleepless nights soon, its all a big pain and even more so when your exhausted. take care
Hi again Crystalewing,
In case it helps… my, previously perfectly regular, periods were wiped out by chemo, but I was still aware of underlying cyclic changes in my body, had menstrual cramps etc, along with hot flushes and night sweats. Having been 47 at diagnosis my oncologist said it was very unlikely my periods would restart but if I had any bleeding at all go straight to GP; he also explained the increase in risk of uterine cancer (from ‘very very small’ to about ‘twice very very small’ if I recall correctly). Last August, ~18m after starting on Tamoxifen I had bleeding, like a light period, so contacted my GP on day 1; it lasted for five days. I was referred to ob/gyn who initially did a transvaginal ultrasound which showed thickening of my uterus, so I was then booked in for a hyteroscopy (internal camera) and bioposies under GA (some places do this with local and others with nothing). The results showed benign hyperplasia (thickening) of the uterus and a benign polyp. Some hopsitals will monitor for a while after such expereinces but this one doesn’t, however I have mentioned it to my breast team and they are ‘on the case’ so if it happens again this will be noted.
It’s hard work emotionally and mentally to keep on top of these things, and not get paranoid; all I can say from my own experience, is that as time goes on it is possible to get a more measured sense of things that might be a cause for concern. I’m sure you’ve been told what I was - that the rule of thumb is that anything that lasts more than two weeks should be checked out by a medic.
Hopefully your body is just settling down to the impact of Tamoxifen doing what it does, and it sounds like you have all the right steps in place to get to the bottom of this worry.