Had lumpectomy and sentinel node biopsy in September. Cancer successfully removed and was classed as node negative, so no cancer spread, great news!. Saw Oncologist yesterday regarding further treatment and will get 3 weeks radiotherapy to whole breast and then a further 4 sessions of a boost to the tumour site. The further 4 sessions came as a surprise as this had never been mentioned before, but I can live with that! It is the hormone treatment that has left me completely perplexed. First she told me I would be put on Tamoxifen for 5 years and after I queried side effects (I already suffer from hot flushes, dizziness etc that comes with menopause) she looked at her computer and said that actually, statistics show that the benefit is so small that I actually probably don’t really need to take it at all. It would be up to me to decide if I want to take it, I could try it and if the side effects are bad, just stop taking it. I don’t know what to do now. If I don’t take it and cancer comes back, I will blame myself for not taking it, but on the other hand, if I take it and end up with bad side effects, or worse still a different type of cancer, I will blame myself for taking it! Is anyone else in the same position as me? Any feedback would be greatly appreciated
Hi Roz1964,
I am sorry to hear you are going through this difficult time. Hopefully another user will be along to share some of their support with you.
In the meantime please do give our support line a call at 0808 800 6000 who can offer their support and advice on hormone therapy treatment options.
Best Wishes,
Lizzy
Digital Community Assistant
Hi Roz , your thought processes sound exactly like mine, I only have a small percentage gain from taking it too, some people have a much greater benefit.I decided to give it a go and see if I could live with the side effects ,after 4 months I am still not decided.If you go on NHS predict and put in your stats it will give you your percentage benefits,but like you I’m thinking if I don’t take it and I get it back could I have prevented it.its a real dilemma .
Hi Roz, is the title of this thread your diagnosis? It’s exactly the same as mine, not many Tubular ladies around as it’s pretty rare Xx
Hi Nick , i take one 20 mg tablet a day , ive not heard of anyone taking higher than that for BC so maybe they have you on the wrong dose? Would explain why you are suffering side effects , im 8/8 eastrogen positive as well , i would check why you have been put on a higher dose , i get an odd flush and a few aches but nothing bad XxJo
I would do, from what ive read 20 is the norm for our type of cancer xx
I’m on 20 mg too and that is standard dose for BC.
Hi everyone, haven’t been on here for a while. I am still waiting for my radiotherapy, finally getting my treatment plan next week and the treatment will start 2 weeks after that, just in time for Xmas. That will be 15 weeks after my operation. I have decided to start taking tamoxifen after my radiotherapy finishes, which will be way into January. I can’t see that it will make much difference anyway after reading all the statistics and talking things over with my GP. The length of time I have had to wait for radiotherapy is shocking, but I guess they are not too concerned about me, so I have decided to just chill out and not worry about things. I will try tamoxifen and if it doesn’t agree with me, I will just stop taking it, but by the looks of things, I had better check I get the correct dosage.
Blooming heck Nicki that is a big mistake by Onc!!!I take myTamoxifen at night which gives me some hot flushes during the night but better than during the day as far as I’m concerned and after 4 months apart from hair thining side effects seem to have settled down …
Hi girls I’m new on here and still find it all hard to talk about but here goes…
I had tubular breast cancer of about 5mm after a routine mammogram. What happened next was the biopsy which I thought was a blood test so said yeah go ahead. When the doc said ‘your brave’ I looked at the nurse who smiled and kept me chatting. You all know the rest.
Aaaanyway about the tamoxifen!
I started taking it a couple of months ago and turned into a miserable sobbing wreck!
It was embarrassing at work and so called my breast nurse who told me to stop taking it. She made me an appt for the oncologist who suggested a different medication that may make me lose bone density as it takes 90% of your eastrogen instead of 50 so I refused it. I’m now trying tamoxifen again and after 8 days it has started again. I had a meltdown at work yesterday and am so constipated! I don’t want to Tamela actives for 5 years and be miserable. She also told me that the one I had is rare and she’s not sure that tamoxifen will be of any benefit anyway as not many trials have been done on it as it is so rare. So I’m seriously thinking of stopping it already. I had three weeks of radiotherapy btw.
Im having the exact same dilemma Roz 
Hi Helena,
Thankyou for your reply. I’ve just checked my tablets and they just say tamoxifen. But I eat really healthy and eat loads of fruit and steamed veg every day. As we speak I’m doubled over in pain from constipation so I’m living on lactulose which I don’t want to do. Especially as I have IBS as well which makes it a hundred times worse. I look and feel 10 months pregnant.
I’m really thinking of stopping it and taking the risk. But I’m torn and not sure if i can stand it another few weeks. Do you mind me asking if your hair has thinned?
Thanks
Lena
(my real name was taken so am using lenlord, my sons nickname for me) lol
Hi Helena,
I’ve checked the box again and it says Relon chem.
but I think I’ll make a trip to my GP and see what he recommends. I took a look at my diagnosis again and it says: area 5mm grade 1 invasive ductal carcinoma. Three nodes were found which revealed significant lymphadenopathy. ER 8/8 ptr and HER2 negative. No idea what all that means as I was so scared I just wanted it gone. But thankyou for your advice I really appreciate it xx
Hi Lena, I also had Tubular breast cancer, it is indeed quite rare and only accounts for about 5 % of BC diagnosis, I took Tamoxifen for 2.5 years but have now been off it for 6 months due to problems with my knees, they are hugely improved now so I know it was down to the medication although I have arthritis as well so they will never be completely normal again.
I agonised over stopping but know my prognosis with or without it is as good as it can be under the circumstances so Im Happy with my decision for now, as Helena says there are various brands of Tamoxifen and many people get on better with some more than others, I think we just take what they give us and don’t question it at the time, just so relieved to be coming out the other side! Xx Jo
Hi joby
I have an apppoibtmeng on weds morning with my GP and I’ll go through it with him.
I’m so sorry about your knees I think I would have made the same decision as you if it was me. But having said that I have arthritis in my right shoulder and it’s very painful a lot of the time. My knees aren’t 100% either as I’m quite clumsy and can trip over on a grape! But I’m still not happy about the other side effects and the toll on the body after 5 years. I wasn’t even told I had to take a tablet until my first appointment after the op! So it came as a surprise. But I’ll go weds and see my GP and see what he says. Thank you god your feedback
Lena. X
Sorry should have said FOR your feedback. Flaming predictive text lol