DCIS and Tamoxifen

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1

Posted on behalf of new user Ruth
Jo, Facilitator

Ruth says on 21 Jan 2011 12:48

I am 53 years old and have been diagnosed with dcis. i have had a wide local insision and am due to have radiotherapy next week for 3 weeks.
when the dcis was removed a very small area of active cancer was found 1-2 mm. Because the area was so small and has been removed my consultant is undecided about tamoxifen. She says it may provide some protection for the other breast but the side effects may outweigh any benefits.
can anyone help? what are the side effects in normal day to day life?
The benefits sound good to me, but I don`t want to take useless drugs

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Hi Ruth

I personally would want to do everything possible to give myself the maximum protection of any future risks of cancer returning. So I would take tamoxifen.

I was taking tamoxifen for approx 2 months before I had my chemo and I didn’t suffer many side effects at all. I’m surprised your oncoclogist hasn’t suggested you take tamoxifen?

All the very best anyway with whatever you chose to do.

Deb x

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Hi Ruth

Most of the se’s that we suffer are those you normally get with the menopause. I have found that as I had already gone a long way down this road I didn’t get any of these, just bone aches, which 3 weeks in are already beginning to ease up. Can you not trial the tamoxifen for a month? As someone posted when i was worried about se’s those of us who don’t suffer don’t post so we only tend to read about those of us who find they get se’s.
Hope this helps,
Ali.

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Hi Ruth

I started Tamoxifen last March between chemo finishing and radiotherapy starting. I was 44 when I was diagnosed in Oct 09. When I commenced Tamoxifen I got hot flushes and some achy joints but within 3 months this had all subsided and I’ve been fine ever since. I got my eyes checked after 3 months just to be safe and will have yearly eye tests in future. Oh and the thing about Tamoxifen makes you gain weight…opposite for me, I’ve managed to loose all my chemo weight and a bit more so it really isn’t all bad although you can read a lot of the ‘bad’ rather than the ‘good’:slight_smile:

Leigh

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HI Ruth
I had DCIS but needed a mastectomy. I started Tamoxifen last Feb. As mentioned in a previous post most of the SEs are like those of the menopause. The worst for me have been the hot flushes but as I was premenopausal before dx I can’t tell whether these would have been any different with or without the drug. I find my SEs are better on the Wokhardt brand- foer one month I had a different brand and the hot flushes were much worse. Having said that, I haven’t had any hot flushes this week! I hope this lasts! Good luck in whatever you decide to do. Annys x

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you could say to your onc your willing to give it a bash but if the SEs do become annoying you can stop it…

the SEs tend to be worse the first few months after you start but by around 3-6 months should settle down if they are going to.

iv been on tamox since 2006 and my SEs were hot flushes at first but then settled down, and bleeding problems for which i had a mirena coil insterted (however this another contentious issue with different oncs having differing views on mirena).

Lx

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Hi There,

My Diagnosis at 41 was multifocal grade 3 invasive ductal. ER Positive, HER-2 Positive Clinically T2, N2, M0 - basically had 6mths chemo, started Herceptin after 3mths on the chemo and swelled with both the Taxotere and Herceptin.
Had mastectomy and full lymph node sweep in April last year and then 20days radiotherapy - tried tamoxifen -

had extreme hot flushes, extreme mood swings to the point I really thought I was unsafe to be near my children, suffered extremley stiff and painful joints, including spasms and cramps. I put on almost a stone in weight.
My oncologist due to the ER positive really wanted me to try the tamoxifen for much longer but after two months I wanted out.

Some say I am silly as the return rate (even though I am cancer free for now) for my type of cancer is fairly high.

The oncologist thought a holiday period from the Tamoxifen often showed that “younger” patients tolerated the side effects better.

Lots of people both patients and those never had the cancer were quick to tell me how stupid I was I was risking death etc etc…

But for me I would much rather a shorter life full of quality than a longer life full of ailments.

The truth from what my oncologist told me was that 60/70% of women taking Tamoxifen will have a reoccurance even if they take it, and 30/40% wont.

For me those figures and my personal circumstances…made my mind up not to take it.

I have spoken to lots of women and about their side effects, they do vary from person to person and to varying degrees.

I sit sometimes and do wonder if I am a fool…But I am single and hope at the age of 42 I still may meet the love of my life dispite the horrid experience of this rotten old cancer! I nolonger have moods swings infact I am having the most positive life experiences with minimal pain in joints. I am looking more like me and able to have fun without me being the raving loon, I felt I had become on my relatively short experience on the Tam.

My boys will remember their mum with a much more sense of normality.

All that said my mother at 59yrs whose cancer was a stage 1 spread to lymph nodes had wide local incision and Tamoxifen for 5yrs swears that it saved her life - 18yrs on she is still here to tell the tale…but not alas without some pay back as she has extreme pain of the joints and arthritis issues since the treatment. She has been bedridden now for some years she is 78. But she felt the side effects she experienced were no different than the menop. symptoms she had already experienced.

Do what your gut instinct tells you…a womans instinct is second to none.

All the best of health and happiness to you all

xxx

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Im 52 and was on tamoxifen for 3 months the worse 3 months of my life so far and spoke to my breast care nurse who said to stop takening it to see if I felt better took me 3 weeks but im back to mu old sane self I thought at on point that I was going mad I dont want to chance the cancer coming back but equal I dont want to live like that for the next 5 years. I am waiting to see my onc to see if there is another drug I can try.
Terri

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I’m 52 and also gave up on the Tamoxifen. I had DCIS and a mastectomy last Feb 2010. I started Tamoxifen in March and for the first few months had relatively mild SEs. However 6 months in - from October/November last year it was just awful. Severe headaches, constant nausea, cramps which left me feeling crippled and joint pain. But by far the worst part was the ‘racing’ brain which at one point made me fear I was having a breakdown. I stopped and started and cut the dose over a number of weeks but there was no way I could tolerate the stuff. I totally agree, quality of life is everything. Of course I don’t want to die of cancer but I don’t want a hellish 5 years either with poor quality of life, feeling like a decrepit old woman. My Onc wants me to have Zoladex injections and go onto Femara but I am very reluctant. At the moment I feel perfectly fit and healthy and I really don’t want to feel sick and ill and on the verge of a breakdown again. I feel really guilty about it though and I know I really should accept treatments offered but am I silly to want to feel ‘well’?
Val