Hi Everyone, I recently developed blood clots in my leg whilst on holiday in France and although they were in superficial veins rather than DVT, I have associated them with the side effects of Tamoxifen and stopped taking it with the support of my oncologist.
I am pleased to be off it in one sense but wonder if Im putting myself at risk through stopping it early. My IDC was stage 1 and caught early through NHS screening. I had lumpectomy and radiotherapy and have suffered from 2 bouts of cording in my arm and chest recently.
Has anyone else stopped taking Tamoxifen early?? Your experience and advice would be very welcome, thanks.
2 years is pretty good going as far as I’m concerned. I lasted 3 weeks. I was grade 3 stage 2 and also HER2+ so pretty aggressive. I’ve had WLE, chemo and bilateral mastectomy. After all that I couldn’t and wouldn’t put up with the side effects of tamoxifen. My surgeon and bcn both admitted most women are overtreated and they still don’t know who benefits from all this. It’s belt and braces for all. I have a friend who had 2 recurrances while on tamoxifen. I’m comfortable with my decision and am happy to take my chances. x
I’ve had Bone pain in my thigh, spine, neck, shoulders arms and ankles. I can’t get a full nights sleep. I feel this drug is damaging me. But what if I stop and it comes back to bite me? It’s an impossible choice.
when i was first diagnose with breast cancer in 1995 i took tamoxifen for 2 years which my onc at that time told me 2 years or 10 the results were the same i wanted to come off it as my auntie the only other person on my side of family at that time had taoxifen related cervical cancer so i came off it i as er+ her2 n i had no other sort of treatment at that time the protocols dictated with dci and no other involvment it was not needed i then went 15 years before it came back but was misdiagnosed by gp as suffered with back pain and told it was muscular i finally got to see a breast consultant who arranged ultasound on my mastectomey side were there is a silicone implant he discharged me as nothing there he said 3 months later i represented a large mass under right rib cage turned out to be breast cancer grown from behind implant gone to T6 of spine and chest wall and the last 5 years have had chemo twice arimidex then tamoxifen for 15 months which gave me a new tumour and a blood clot on the lung i am now on examstane could not get funding for everolimus which works better in conjuction with the examstane as i have had to much treatment as to get everolimus you can only have had 1 chemo and 1 hormone treatment
Hi Ladyjulie I only stuck with tamoxifen for 6 horrible weeks - when I stopped I became me again - the fog cleared and I felt normal, I decided I would rather live my life as ‘me’ for as long as possible rather than possibly longer in the tamoxifen state. subsequently the oncologist said in my case it probably made 1% difference or less to a recurrence!!. I am now 2 years on and so far so good!
Thank you loveflowers3 and jenji. Great that you are both ok 2 years on from stopping or not even starting Tamoxifen. Let’s hope it stays that way. For me it’s 2 months and I’m comfortable with my decision.
So sorry to hear your cancer returned so soon lolly73. Hope you are on the road to recovery. I guess you will never know for sure whether stopping the drugs was the cause of your recurrence.
I am considering stopping Tamoxifen after 2.5 years. In Dec 2013 diagnosed w/ Stage 1 ER + BC thru sono. Bracca1 neg. Lumpectomy in Jan 2014, clean nodes & margins, radiation, no chemo. Onco Dx score was 16 w/a 7% recurrence chance. Started Tamoxifen March 1, 2014. Gyn does a uterine sono every 4/6 months. Had d & c in Feb 2015 due to polyps. All benign. Now uterine lining thick, polyps returning & periods heavy. They want my to have a hysterectomy. WHAT!!! I have the hot flashes, mood swings, no libido, brain fog. I weigh 109lbs, eat no refined sugar, an gluten, dairy & soy free, don’t drink anything but water, green tea & occassionally coconut water. Eat tons of fresh veggies, fruit, omega 3 rich fish, not much meat, lots of beans, quinoa, brown rice. I do all my own baking w/ ancient grain flours, organic coconut or raw cane sugar. Supplements include a multi, calcium, vit d3, garlic,vit c & turmeric. I don’t want a hysterectomy. Wondering if stopping tamoxifen will reverse uterine issues or am I tempting fate? Looking for opinions…thanx for any input.
hi lady julie i was on tamoyifen for 9 months made my heart skip beats i felt so poorly on it i too came of it, iv tryed other meds but they did the same so i dont take anything now i eat plenty of veg and fruit and dont eat red mea0 and no dairy things plenty of fish and just had mamagrame all clear that two and half years ago its been a rollercoaster but i am fine now just got to go and have a tatoo nipple i used to say to my daughters no tatoo now here is me having one i wounder what they would say if i asked for a four leaf cover to be tatooed in stead of a nipple lol well they do say they bring you good luck god know we nef it
Sorry to hear the issues some of you are going through at the moment, however, for those who are about to start tamoxifen & are worried about it, I just wanted to make the point that many women are fine on it & find any side effects are quite livable with if they do get them.
best wishes to all
ann x
Hello and sorry to hear about your dilemna. I was diagnosed and in 2014 and was Stage 2 with HER2nU positive. I was originally on Exemtrane and was unable to walk after about 6 months. My onc switched me to Tamoxfen and I must say I to am in the mist of deciding to stop taking it for good. About 3 months ago I was unable to walk from the first drug and was instruced to come off the Exematrane.
After several months of Tamoxfen I now have osteoprosis, which I did have last year, it appears I’m developing problems with my eyes (maybe cateracts) as a result and the joint pain is unbearable. I temporarily stop taking it and now making a decision on whether to stay off for good.
If I can’t walk or can’t see because of this drug, what’s the point. After finding this site of other women’s testimony I feel closer to making the decision to stay off and taking my chances. I am going to be more aggressive about what I eat now.
I’ve been on Tamoxifen for four years. The night sweats aren’t so bad but I sweat a lot during the day!!! I have to change clothes 2-3 times a day. That’s been my worst symptom. In regard to the eyes, I got cataracts a little after two years of treatment and had to have the surgery. If your doctor hasn’t told you to absolutely get your vision checked on a yearly basis, they should have. My eyes are fogging up again and may require the surgery for second time because, yes, it can occur again
I started taking the drug in Feb 2017 - after having a mastectomy but clear lymps - so the operation wasn’t so bad and recovery pretty quick as no chemo or radiotherapy. I was having my periods before I had the op but then the day I started T they stopped. I had hot sweats but nothing too dramatic so I thought - great - that’s going to be it. However about a month ago - so 10 months after taking the drug - I started to lose my hair. It is now half as thick as it was and it worries me sick that I’ll lose more. In fact it’s starting to upset me more than anything since the op. I’m on lots of vitamin pills and iron too - but it’s still coming out. Have booked in meeting with oncologist - I’m going to see if I can find out what % risk I am at if I stop taking it. After reading all the threads over the whole site about T I also realise I am having dry eyes, some lady talked about cataracts !! blimey!! what is in this drug!! Osteoporosis - and the rest. I suppose I will need to get bone density checked out so I can keep an eye on that - so much to think about and underlying all that - a thought that perhaps I shoudl take my chances. Who knows how much of a deterrant T is for reocurring cancer for me. Is it just breast cancer that would return or somewhere else in my body. In some ways I’d pay for another mastectomy and come off the T if that would mean I could.
Hi All, I had a lumpectomy and radiotherapy for grade 3 oestrogen positive cancer. I started A and stops after a few days as I went into clinical depression which I came out of after a few days off the pill. Has now started Tamoxifen a couple of weeks ago but I’m feeling extreme fatigue and bad mood swings. Really considering coming off it I don’t know whether to try and stick it out for six months or a couple of years. Any comments welcome x