I hate being on tomaxifen, with this little pill I seem to have no energy, hot flushes and all the rest of the c**p, last weekend I stopped taking it just to see what happened and felt great, loads of energy got loads done and felt normal for the first time in a year.
This sounds silly I know but would it make a big difference to the cancer coming back if a I stopped taking it- is it such a high risk ? Dont know who to ask about this.
I want the old me back.
Hi Westy
Please feel free to contact our helpliners to talk about your concerns of any possible risks associated with stopping your treatment on 0808 800 6000, the line is open Mon-Fri 9am-5pm and Sat 9am-2pm, your Breast Care Nurse is also a good point of call for a query of this nature
Best wishes
Lucy
I don’t think the side effects would disappear so quickly westy…
Why don’t you contact your breast care nurse or consultant as they will know exactly how er+ your cancer is. It may be that the benefit to you is very small. I am not sure how the BCC helpline would be able to help you without knowing all the facts.
You need to talk to your oncologist.
Hi Westy
Totally agree with the above post. However i wanted to say that i dont think you should just decide not to take the tamoxifen. You should see your Doctor. Also not taking it for a weekend would not have that much of an affect it must take a long while for the tamoxifen to get out of our system.
I asked my oncologist last time i saw her as i have such awful side affects and she shook her head and refused to even consider me not taking it.
The thing is i will take anything if it means my cancer is being controlled.
Hope you see someone soon.
Rx
thanks for all your help,I will seek advice i think i had a touch of the blues when i sent this.
feel more positive today.
thanks westy
Hope you feel better soon Westy. I have been on Tamoxifen for 13 months and know how you feel. When I last saw my Consultant, I was moaning away and he said " Mrs ****. Don’t forget you have a life threatening illness". I thought that this was a bit harsh but it made me think. Also, when you feel down, remember that we are lucky to be able to take this pill even though we hate the side effects.
I was moaning to my mother today about how I feel permanently like I used to the week before my period even though it looks as though my periods have stopped now. Headaches, hot flushes, weepy, severe mental confusion and I mean severe. Last week I sat outside my husband’s old place of work waiting to pick him up, forgetting he had changed jobs…I tried to open the front door with my car key fob…put a plate of food in the cupboard instead of fridge…and dropped my dirty clothes into the toliet instead of the wash box. I have done a lot of other stupid things but I can’t remember them ( another sign of my mental confusion ). Yesterday my feet seized up and I hobbled all day and I have had yet another weekend of hot flushes. I often feel like I can’t cope with this for another 4 years but am ER+ 7/8, I think, which is high.
There is a fact sheet on this site somewhere re menopausal symptoms which is good. If I can find it I will send you the link. Might be this one
www.breastcancercare.org.uk/docs/menopausal_symptoms_jun_2006_0.pdf">
Take care
Debbie
xxx
Hi,
I just wanted to explain a bit more about what our helpline can offer;
Everyone working on the helpline either has experience of breast cancer, or is a breast care nurse, and has an excellent knowledge of breast cancer issues. They receive daily information on new developments, fed into from our wider clinical team, our press team, and campaigns department.
The helpline team comes from a variety of backgrounds, so callers get to talk to someone who has an understanding of the issues they are facing. They are able to talk about both practical and emotional issues surrounding breast cancer and breast health problems.
They can talk through the complexities of different treatments to help you understand your options and explain the best way for you to get treatment.
Kind Regards
Katie
Facilitator
Thanks for that Katie
Debbie
xxx
Hi Westy,
I had Grade 3 BC, HER2+, ER+ in 2004 and took tamoxifen for two and a half years. I stopped taking it in September as I was fed up with the side effects and desperately wanted to have a baby. Looking back, this seems ridiculous and I feel embarrassed typing it as on Oct 26 I was diagnosed with secondaries in my bones and even though I have been reassured by my oncology team that my secondaries would not have come about because I stopped taking tamoxifen I cannot help, during those dark, low moments that we all have, thinking maybe I could have prevented this or delayed this if I had continued taking tamoxifen.
I now find myself at 39 facing an even more uncertain future with incurable but treatable secondaries, having hormonal treatment that makes tamoxifen seem like a kindly younger sister. In a heartbeat I went from one end of the cancer care spectrum to the other and wish I could turn back the clock.
It is totally up to you what decisions you make and it is difficult to come to terms with the side effects of taking tamoxifen and when you have finished treatment for BC you just want to feel some kind of normal again. I am not trying to influence you or scare you but just though a different perspective might help, perhaps.
Angee xxx
Gosh that made me sit up and think. Really sorry about your dx Angee. I always feel really guilty when I moan about Tam anyway but didn’t really know that there was other hormonal treatment that was worse than it. I am so naive. Yes your perspective has helped me and no doubt everyone else. What can I say but my thoughts are with you
Love
Debbie
I have also just stopped taking Tamoxifen for a week.(Not by design, we went away and I lost my bag with the medication in it). BUT, I have felt 100% better this week, less tense, slept better, less aches and pains and my husband reports that I am “back to my old self”.
I am working in Africa and was worried that I may not be able to get a reliable supply here. When I asked my oncolocgist about this on my last consultation before leaving he implied that the Tamoxifen only made a small difference in comparission to the radiotherapy and not to worry about it. My GP was not so sure about this and advised to keep taking the tamoxifen and prescribed a 6 month supply- but said that the oncologist would know better!
I now feel very mixed. I don’t want to risk a re-occurrence but wonder if I can survive another four and ahlf years on Tamoxifen.
LynnW, I know how you feel! A week of Tamoxifen gave me sleepless nights, constant palpitations, frequent hot flushes, aching legs, vaginal discharge and an occasional stabbing pain in the centre of my tummy. I was miserable and cried myself to sleep every night. A week *off* Tamoxifen and I was ‘me’ again, albeit many of the physical symptoms have yet to wear off. Facing five years - FIVE YEARS!!! - of this scares me, and yet, as Angee points out, the risks are real if I don’t continue to take it. Don’t you wish you had a crystal ball?
Yvonne
(wiping sweat off her forehead after yet another flush)
Hi Westy
I have been taking Tamoxifen for 4 years now with all the symptoms you describe plus I have had two gynae procedures for abnormal thickening of the womb (another side effect! Lol!)
I have to say though that I feel it has given me more than it has taken away and we are lucky to have such good treatments available to us these days. I have just found a new lump in the unaffected breast and if it turns out to be cancer well at least with a bit of luck, the tamoxifen might have limited the damage. Hold on there Hun! It’s a rollercoaster!
YvonneMC and KateG
Thanks for your comments. I’ve not restarted the Tamoxifen yet, still getting hot flushes but have had more good nights’ sleep and feel better than I have since I first started taking the Tamoxifen in August. Yes, FIVE YEARS - doesn’t bear thinking about! What KateG says does make sense though, would I forgive myself if a reoccurrence happens. I just can’t decide what to do…
Lynn, my doctor was adamant today that I should resume. I’m therefore giving it a second chance, in the hope that the effects will die down in a month or two - that’s what he told me happens with many women. I’ll keep you posted!
Yvonne
It may be worth asking for Nolvadex D instead of tamoxifen, many women say that it reduces the side effects. I certainly found an improvement when I changed over.
This link may help you.
breastcancercare.org.uk/bcc-forum/discussion/10203/tamoxifennolvadex/#Item_0
Best wishes
RMW
Yvonne and RMW
Thanks, I think I need to try and talk to my doctor about this. It’s such a pain being so far away from home (currently working in Zimbabwe). You don’t appreciate the great service the NHS give until you don’t have it! It is so reassuring to be able to access the website and “chat” to others.
Take care both of you and I wish you a very healthy 2008.
Lynn