I had lymphoma in '99 , breast cancer in 2005 and have just had a mastectomy for another breast cancer. I had just embarked on ordination training to become a hospital chaplain-ironic eh?!
Have just been told today that I must take tamoxifen.
Expected to take this news in my stride but am feeling really angry. Looking at the side effects ( and I appreciate that might get lucky and not have any !!!) it seems that this move will mess up my studies ( confusion? Inability to concentrate?) and any normal life.
At the same time am feeling guilty -I’m alive, I’m lucky, I’m able to turn down chemo.
BUT this is the third time and I’m SO furious. I want my life back!
Roller coaster eh?
How much will Tamoxifen blow things for me? I’m post menopausal ( first lot of chemo did that for me at 39) and doing a very demanding post grad course with practical placements.
Here I was trying to do somethng useful with my life , and…
Yes, I know this will be useful! But been there, done that!
Gggrrrr!!!
Hi WendB,
How refreshing to come across another angry lady! Second time around for me (I was 31 first time round)- and I know I’m supposed to feel grateful because my life has been saved, but I don’t. Last July I was fit and healthy, six months into my first full-time job since the children were tiny. I didn’t feel ill: I just had a breast lump. Now, I have tinnitus (gift from the FEC) and peripheral neuropathy in my hands, feet and face (thank you Taxotere). In a few weeks, I will be mutilated and given lots more numb body parts and a damaged immune system. And my oncologist wants me to take hormone therapy - even though only 50% of the tumour is only weakly Er+. I’m already at high risk of developing osteoporosis, and the other SEs aren’t much better. I should probably give up my job (a manual one in a factory) because of the ANC I’m due to have, but am determined not to. I want my life back, too.
Hi,
you have been through a lot and I think many of us will understand your feelings.
i am 51 but pre menopausal, and have been on tamoxifen for 1 year now. the only definite side effect I have noticed ids erratic periods. I do get tired more easily than before, but that started with rads rather than the tam. its worth remembering that people without any side effects don’t tend to post much.
i would say give it a go, if it does cause you problems then you can always stop.
plynda
My daughter’s partner’s mother was just finishing her 5 years on Tamoxifen and wondered why I was so anxious about taking it, as she had not experienced any problems with it at all.
As Lakesover says, people don’t complain when there’s nothing to complain about!! Think how many people are dx with BC every year and we are all (er+ve) on Tamoxifen or AAs for 5 years - so there must be 1000s of women taking them.
You could always stop taking them if they cause you too much reduction in quality of life? I am glad to have it as a prevention strategy - especially as I turned down the offered chemo!!
I am back at work doing a demanding job teaching classes whilst the teachers have thewir prep time, having to ‘think on my feet’ as well as stand on them. I struggle a little bit more with names than I used to, and have to rest more than before, but I wouldn’t say I was confused!
I know EXACTLY where you are coming from with the “Not grateful but angry” emotion - I’ve said that a few times over the last year! My onc was lovely, she actually said “It’s what we’ve done to you” when I was complaining about (minor) SEs from WLE and Hormone Therapy (I’m on Zoladex as well as Tamoxifen) - that made me feel better, somehow.
Ah yes, tamoxifen! I’ll be starting this soon… as my 7th treatment after being diagnosed in 2006 with ER+ bc/bone mets.
I’m 63 and very post-menopausal (had hysterectomy in 2001). I’ve had 3 chemos: EC, Taxol - which didn’t work, and capecitabine, very effective for me but I’m taking a break to recover from side effects. Also letrozole, Faslodex (no joy with this either) and exemestane.
At least tamoxifen doesn’t give you blistered fingers and leathery soles of feet.
I agree with the previous replies you’ve had - people with no SE’s may not post. So give it a try, you can always stop taking it.But I can’t tolerate Letrozole or Tamoxifen - reduced me to a depressed blob, could’t work & couldn’t exercise! If you Google ‘non-adherence/ non-compliance to Tamoxifen/ Letrozole’, and look at research papers, you find that may be 50% of women don’t continue with treatment.
I went along with surgery & chemo, all ‘life changing’ procedures, which I’m grateful for, but taking Tam or Let would be a life change too far!
Hi WendB
I totally get the anger you express. I too feel very resentful of the control that cancer has exerted over my life.
You ask for ideas…
Give it a try and, as you say, you might not get many side-effects anyway. I realise forums like this have their uses but one could be left with the impression that so many people get so many side-effects from treatment when the real picture is probably very different.
Ask about alternatives. e.g. have you been offered an aromatase inhibitor drug which I understood to be more efficacious than Tamoxifen for post-menopausal women and which may have a different side-effect profile.
You say you “must take Tamoxifen” - nobody can force you to do anything. You have the right to refuse and to ask for alternatives.
All the very best with the training and with however you decide to proceed with the treatment.
Hi don’t know if this helps as we are all so different but I’ve just finished my stint on tamoxifen - 5 years. At first i got a few hot flushes but they stopped after a while, I did get bouts of chronic tiredness - it would suddenly hit me mid afternoon but after a short nap i was back to normal. Obviously those with demanding jobs can’t have the luxury of a nap but I think it would be possible to work through it - with a good dose of caffine. The only other se effect was with my sex life - afraid i havn’t discovered an answer to that one yet.
Give it a go - you can always come off it if it’s too bad
cheers
Caroline
WendyB, I AM a hospital chaplain, and on post-menopausal treatment. I’m not surprised your angry, life has thrown a lot at you!
In my part of the country, Tamoxifen is for PRE-menopause and Letrazole/Femara type drugs for post menopause. I’m on Letrazole… side effects are that I am stiff when I first move after being stationery for some time, and I get a few more not flushes, but they’ve settled down fairly well now. I had them before anyway. Brain wise, no particular problems. I found post-chemo my brain didn’t work as it used to, but now it does, so providing you are gentle with yourself and allow recovery time, you may well be OK… I have about as much energy as I used to have, but I have learnt to pace myself better…
PM me if you want to…
God bless, Jane
Hi Wendy B, as my moniker suggests, I am another rev-type person, though I am church-based, and travelled this path roughly the smae time as Jane (waves!). At the time of my diagnosis I was about half way through a PhD alongside full time work (glutton for punishment). I chose to curtail my studies and submitted an MPhil which I wrote up between surgery and rads (I had my chemo before surgery) which I passed with only typos to correct. Looking back I don’t know how I did it, but I did.
I have not found Tamoxifen has had any effect on my mental capacity, though chemo sure as anything did, and although I still have some residual loss of concentration (bearing in mind I was breezing the PhD, so my expectations are high) and am much more forgetful than I used to be, I am planning to undertake a small research project this year.
I would say as far as studies and training are concerned, tell your supervisor/mentor/tutor/DDO or whoever and don’t be afraid to ask for extra time, more breaks or whatever you need. Under equality legislation (replacement for DDA) you are entitled to reasonable adjustments which might mean more time for exams, more breaks in placement etc.
Hope all goes well for you and you are soon enjoying your new vocation.
Thankyou all-a really helpful mix of replies about Tamoxifen and studying etc. Makes such a difference to share things doesn’t it?
I must admit Jane, I did think I’d be on Letrazole/Femra types and did say that to him-but I am now wondering if he’s remembered I’m post menopausal. He may have just looked at my age and assumed. But surely he should check?!
I think I will check things out a bit more before I go ahead-I probably will take it-your advice is wise’ Try it and see’ but quality of life is SO important for me now. Having said that my aduly children just want me alive! Difficult balance to be achieved .
Thankyou all for yourk ind words
Lots of lovex
Hi WendyB.
Tamoxifen is also given to post-menopausal women. As I had low bone density I was changed from Arimidex to Tamoxifen which is supposed to be kinder to your bones. I am well past menopause!
I have been on it for a year and apart from hot flushes and occasional head-aches haven’t found it too bad.
Take care,
x
Hey
I’m post menopause, age 43 , was only slightly er positive also
Tried tamox, , awful for me, so as hormone levels showed post nen, I started armidex, bingo, feel OK.
However my bone density scan showed thinning in my bones, ,
Try first then do what’s best for you
Xxx
Hi again WendB - definitely check out whther your doctor checked your menopausal status. Mine assumed I was pre-menopausal as I was in my mid-40s so I insisted on a blood test which showed I was post-menopausal. I still suspect he was going to put me onto Tamoxifen because it’s cheaper than letrozole (I might be being unfair but this process has made me rather cynical).
Hi Wendy
Sorry to hear you are going through this all again. I was diagnosed in 2009 (already post-men) and had problems after finishing treatment with depression. I am a christian and your book really helped me. I have been on tamoxifen since and it has not been easy, but side effects have improved with time.
However, last summer I did decide to take early retirement so have more time to pace myself etc.
Joy