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Tamoxifen - to accept or refuse?

15 REPLIES 15
Annie22
Member

Re: Tamoxifen - to accept or refuse?

.....I wasn't offered it after mx for dcis. I had a mirena too, ER positive. 6 months later I found cancer in the reconstruction. As my dcis was so widespread, I still can't understand why I wasn't given proper information and choice. My husband and I asked the question ' are you sure there is no belt and braces approach' and was told that dcis treated with mx was a cure and I wouldn't need anything else, Wrong answer! 3 years on and only now have I just been told I can have more ops to fix my poor old misshapen and twisted reconstruction. 3% could still be you and so I would urge everyone to give the drug a go for a few months to see how bad it is - you can always stop it if you can't cope.

Cybele
Member

Re: Tamoxifen - to accept or refuse?

Just to say I got very stressed about whether or not to take Tamoxifen, as I had heard so much about the side effects, and because I'd had a terrible time with the chemo and the rads and felt my body had just been through ENOUGH, but it was important for me as I'm 7/8 ER+, so I decided I had to give it a go.

 

And I've been absolutely fine - there was low level nausea for the first couple of weeks, but that has now disappeared, sometimes the joints of my fingers feel a bit achey in the mornings, but that's it. I wish now I hadn't spent so many weeks agonising about it and delaying it - you can only know if you're going to have bad side effects by trying it, and if it doesn't suit you, then you can stop.

 

I've had two different brands, Relon and Wockhardt, and feel exactly the same on both of them.

Butterfly318
Member

Re: Tamoxifen - to accept or refuse?

Hi everyone.

 

I started Tamoxifen 3 months ago following mx with axilliary node clearance (evidence of cells in one lymph node but no vascular invasion) & Chemo (prior to surgery) & rads for 6.5cm IDC grade 3 er+ 8/8 pr+ 8/8. I was unsure whether i was post or pre menopasual due to having had Mirena coil for 2 years so Consultant carried out blood tests to confirm Menopause status.  I have been taking Tamoxifen for three months (always Wockhardt).  I initially took it in the morning and found i had hot sweats in the afternoon so i changed and took it at bed time so whilst i do experience some side effects, namely night sweats it really is all manageable.  I have recently bought a 1 tog quilt along with 100 % cotton bedding and these are really helpful as is my pillow (which is cotton with a silk pillowcase). Since my diagnosis i drink very little alcohol (just one small glass of a qualtiy wine) but in honesty the sweats are worse if i have had a glass of wine. I know that everybody is different but they are manageable.

 

Take Care   Gilly x 

 

 

 

Guest user
Not applicable

Re: Tamoxifen - to accept or refuse?

Hi everyone

Just as an update, I started on Tamoxifen 29 days ago, first pack was Wockhardt brand and this one is Teva. So far all I have really had is several hot flushes each night (about once every couple hours I wake up feeling like I am a radiator) and no other side effects. Only one day so far with this new brand so i will see how that goes.

CBreeze
Member

Re: Tamoxifen - to accept or refuse?

hi

 

Ask your Oncologist what the % are re cancer returning if you take Tamoxifen or not. For me there was a 3% difference so stopped taking it as I wasnt getting on with it very well.

 

Good luck

Guest user
Not applicable

Re: Tamoxifen - to accept or refuse?

Hi Anne

I had a grade 1, stage 1 ER+ tumour removed on 1st August with no lymph nodes affected. My surgeon has since told me that it is up to me if I take Tamoxifen as the benefit may not outweigh the side effects.

 

I am in a similar position to you, just turned 50 with merina coil fitted and having mine removed on Tuesday with a replacement non-hormonal one fitted same day. Also not sure if menopause has started. My radiotherapy starts same day and I have been putting off the decision about taking the Tam to try to find out more about it, but all the advice seems mixed and the advice about removing the coil wasn't any better.

 

Anyway, I have decided to remove the coil - just in case, and I am going to start taking the Tamoxifen. If the side-effects are too bad, I know that coming off it will not be too disastrous for me, but if I never take it and the cancer returns I will regret not giving it a try. Hot flushes and night sweats for a few years are not life threatening, cancer can be. What's more, I can expect these type of symptoms when the menopause hits me anyway!

A x

CBreeze
Member

Re: Tamoxifen - to accept or refuse?

Hi Anne

 

I had a terrible time on tamoxifen so asked to see my oncologist. I asked her what were my % of getting cancer again if

1. I take tamoxifen or

2. I dont.

I was told for me there was a 2-3% difference and so I decided to stop taking it.

 

May be ask your oncologist for % too

 

Hope that helps.

 

🙂 Clare

Annen
Member

Re: Tamoxifen - to accept or refuse?

Thank you for all your help and support, after discussing all my fears with my Oncologist, I've decided to try Tamoxifen, had to ask a few staff before eventually getting the prescription exemption form!  So starting next Monday - here goes!

Anne xxx

Annen
Member

Re: Tamoxifen - to accept or refuse?

Thank you everyone for your replies, its really reassuring to know I'm not going through this alone.  I'd not even sure exactly all the results mean - 4mm grade 2 invasive ductal carcinoma with intermediate nuclear grade DCIS, whole size of 66mm, clear margins, no vascular invasion, 7 lymph nodes -ve, ER +ve, HER2 -ve, NPI 3.08. 

 

I'm going to see my Oncologist again tomorrow to discuss and decide.

Love and best wishes to you all

Anne xxxxx

 

Blue67
Member

Re: Tamoxifen - to accept or refuse?

Hi Anne,  I was very interested to read your post as I feel that I'm in the same situation as you. I was diagnosed with DCIS almost 2 years ago. I had a mastectomy & reconstruction and was told that I needed no further treatment. My mum had breast cancer 23 years ago & took Tamoxifen for 10 years. She has always questioned why I wasn't given Tamoxifen. In August, I saw my breast consultant for a routine check up & I asked him again about Tamoxifen. He said that he would mention it at the next meeting. A week later I was called into the hospital to see the consultant. He said that the oncologist had decided that I might benefit from Tamoxifen. I asked why it hadn't been given to me when I was diagnosed and he said protocol? I'm now really undecided about taking Tamoxifen as I've read about the horrendous side effects. I also have a friend who is taking Tamoxifen & has every side effect going, although my mum didn't suffer any side effects. Part of me feels that the only reason the consultant/oncologist have now recommended Tamoxifen is because I keep asking about it. A thought echoed by my GP. When I asked her what the consultant meant by protocol, she said they probably think that I don't need it. My GP was going to look into the matter & I'm due to see her on Monday. I really don't know what to do. I can't bear the thought of the side effects, but what if I don't take it & get cancer in the other breast.

Have you got any further with your decision. I would really like to know what you decide to do.

Best Wishes, Sally.

Zuleika
Member

Re: Tamoxifen - to accept or refuse?

Just to balance the discussion, I had mx 4 weeks ago. I am now on Tamoxifen with no side effects at all. There is a large body of evidence supporting the use of tamoxifen in reducing the risk of recurrence. Unfortunately the media highlights the negative aspects of the drug, rather than the positive.
Good luck to everyone
z
JB
Member

Re: Tamoxifen - to accept or refuse?

I had mx end July and like you Annen all my cancer has gone so don't need any other treatment other than tamoxifen.  My HR+ score was 8/8 for all 3 tumours, so tamox was the treatment offered.  I'm not sure what other treatment options there are, but so far the s/e have been hot flushes.  Not sure if me waking up a lot during the night is due to the hot flushes or separate s/e!   But given my score, I'd rather have the s/e of tamox than give any of the little blighters a chance to come back.   Some of the info I've picked up on the forum gives me hope that possibly s/e might get less (trying to be optimistic here lol!)

Guest user
Not applicable

Re: Tamoxifen - to accept or refuse?

Hi Anne it's so nice to hear that it's not just me that is in two minds wether to take tamoxifen or not? I had an invasive ductal carcinoma and had a wide local excision in June. I am just having radiotherapy at the min and keep getting asked the question have I started on tamoxifen yet? Just so I had a bit more time to mull over it I've said I'd start once my radiotherapy finishes in around two weeks. It's abit like taking your life in your own hands as they are the experts, but as you said some of the side effects are terrible although I understand done people have no side effects? Aaaaahhhh feel so confused!! Carla x
stressy_messy
Member

Re: Tamoxifen - to accept or refuse?

Hi I agree with black swan you should talk to your medical team  to find out what benefit Tamoxifen will give you. Do you know your ER score, they usually score from 1 to 8 mine was 8/8 for ER and PR so as high as you could get so I didn't hesitate about taking it. I finished my 5 years at the end of March and although I did have some not very nice side effects I managed to get there and am glad i did. there are loads of people who only suffer mild effects and some  don't have any.  The thing is, and I don't mean to sound pessimistic, but there's no certain guarantee with BC whatever the prognosis and Tamoxifen or AI's  are the best defence for ER/ PR +  BC. 

 

all the best Melx

BlackSwan
Member

Re: Tamoxifen - to accept or refuse?

I think you should discuss this with your oncology team.  Ask them about how much advantage you will get from Tamoxifen.

 

My layperson's understanding is that there is normally a very significant reduction in risk of recurrence/death for people with ER+ cancers,  so unless your team says otherwise, hormone treatment is likely to be really worthwhile.

 

Give yourself the best chances you can.

Annen
Member

Tamoxifen - to accept or refuse?

I’ve recently had a mx for IDC and DCIS. Fortunately all the cancer has gone and I’m ER+, so I’ve been advised that the only treatment I will need is hormone therapy, so after hearing all about the advantages and disadvantages of Tamoxifen on the day it hit the news again about how many ladies can’t cope with the side effects is making me think whether to bother taking it or not, although obviously not everyone suffers.

I currently have a mirena coil, which has suited me very well during the last 3 years with no periods, mood swings although I have constantly battled with my weight since going on the pill at 18.  I’m nearly 50 and because of the coil I honestly don’t know if I’ve gone through the menopause or not yet.  However, before I can start taking Tamoxifen the coil needs removing – which will be very painful!

Or do I leave the coil in and refuse Tamoxifen and hope for the best that the cancer doesn’t return in the other breast?

I’m also worried about the chances of getting cancer of the womb, which my maternal grandmother died of.

Big decisions, any advice or support is very welcome.

Anne xxx