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Tamoxifen - any good news stories?
Hi all, I'm 54yo, just had a single mastectomy and my prognosis is looking good. Oncologist is just waiting for the Endopredict to return a result but is hedging towards Tamoxifen or similar. The more I read the more I'm stressing about taking any of these drugs (my mum was on it 40 years ago and from memory, it wasn't pretty). Are there any good news stories out there? or is it terrible for everyone? Thanks P299ViewsSign in to react to this post4CommentsLetrozole explained - a good read
LETROZOLE AND THE HALF WHO STOP TOO SOON In one large study of 8,769 women prescribed hormone tablets after breast cancer, only 49 percent took them for the full planned time at the right schedule. Women who stopped early had a higher risk of death in that study. This post explains one of those tablets, letrozole, so that the years of treatment make sense. WHAT LETROZOLE IS Letrozole is a small 2.5 mg tablet taken once a day. Doctors use it for hormone receptor positive breast cancer in women after menopause. It is used after surgery to lower the chance of the cancer coming back, after five years of tamoxifen for extra protection, and in advanced cancer to keep the disease under control. WHERE ESTROGEN COMES FROM AFTER MENOPAUSE After menopause the ovaries make very little estrogen. Yet estrogen does not disappear. An enzyme called aromatase keeps making it in tissues around the body, and even inside the breast tumour itself. It does this by converting hormones from the adrenal glands into estrone and estradiol. Some breast cancers use that estrogen as fuel to grow. HOW LETROZOLE CUTS THE FUEL Letrozole binds tightly to the iron centre of the aromatase enzyme and jams it. Picture a factory with one central machine that turns raw material into estrogen. Letrozole jams that machine. Within two to three days, estrogen levels in the blood fall by 75 to 95 percent. In one small study, letrozole blocked more than 99 percent of the body's estrogen production in every woman tested. The tablet is also precise. It leaves the stress hormone cortisol, the salt balancing hormone aldosterone and thyroid function essentially untouched. WHY IT IS FOR WOMEN AFTER MENOPAUSE In women whose ovaries are still active, cutting estrogen would be expected to make the brain push the ovaries even harder. For that reason, guidelines only use drugs like letrozole before menopause together with treatment that switches off the ovaries. WHAT THE BIG TRIALS FOUND In the BIG 1-98 trial of over 8,000 women, letrozole lowered the risk of the cancer returning compared with tamoxifen, and lowered the risk of it spreading to distant organs by 27 percent. When researchers pooled data from nearly 32,000 women, five years of an aromatase inhibitor cut the risk of dying from breast cancer over ten years by about 40 percent compared with no hormone tablet at all. Letrozole lowers risk. It does not guarantee anything, and it is not described as a cure. For a woman at medium or high risk after menopause, it sits at the centre of the plan. Exercise, diet and supplements support that plan. They never replace the tablet. HOW THE BODY HANDLES IT Letrozole is fully absorbed whether taken with food or not. It lasts about two days in the blood and takes two to six weeks to reach steady levels. The liver clears it mainly through an enzyme called CYP2A6. Genes matter at this step. Letrozole levels can vary more than tenfold between women on the same …193ViewsSign in to react to this post5CommentsXanthelasma and raised cholesterol on letrozole.
Triple pos IDC girl here. I’m post 5 mths chemo, single mastectomy with lymph sweep with clear margins and post oopherectomy. Finished trastuzimab a bit early due to side effects so now plan is for just hormone therapy 5 yrs. I just saw GP today regarding what looks like xanthelomas. Hes given me blood form to check cholesterol and thyroid. I showed oncologist yellow skin 2 mths ago and again 5 days ago and she saying it’s not related to any cancer treatment and see GP. I looked up Letrozole info on eviQ and it states that raised cholesterol a known side effect and that levels will be monitored. Today I’ve just got results back and LDL is 5.9 and total cholesterol is 8.2. I’m starting to lose trust in oncologist and feel like I’ve got to check everything so to prevent medical harm. I do t have medical training but do have a keen interest in reading full info of every medical intervention due to previous experiences with medical system. Anyone else have cholesterol issue on letrozole? And if so did you switch to diff AI? Or did you stop taking? Or did you treat naturally? EviQ says other AI’s can all raise cholesterol too.237ViewsSign in to react to this post5CommentsDIEP recon and Zoladex
Has anyone been on Zoladex injections before there DIEP surgery... where did you continue the injections in the month before and after surgery? Were you able to use Lupron instead? I am not a candidate for oopherectomy at my age, but my team can’t give me an answer yet about Zoladex injections. Surely I’m not the only young hormone positive BC patients on zoladex who has gone through DIEP....1.2KViewsSign in to react to this post9CommentsZoladex 3 monthly available but not PBS covered for women
I wanted to share something I recently learned as it might help ease the burden of regular monthly injections. I recently learned that the goserelin injections many of us have monthly are actually available in a 3 monthly dose (10.8mg). I was a really hopeful thinking this could significantly reduce the stress, time and cost that comes with needing to have an injection every 4 weeks. However, my Med Onc informed me that in Australia, the PBS doesn't subsidise the 3 monthly dose for women, although it does for men (prostate cancer). The reasoning given that there's `insufficient evidence of reliable suppression of serum oestradiol' in women. What doesn't make sense is that there is evidence suggesting otherwise. Recent research indicates that the 3 monthly dose is non-inferior to the monthly dose for pre-menopausal women with breast cancer in terms of ovarian suppression. For me, the monthly injections come with a real burden: financially - GP visits and medication add up every month time wise - frequent GP appointments and pharmacy trips take time out of the week. physically and emotionally - injection itself is painful, it's a large slow release implant into the abdominal subcutaneous tissue. The main alternative - surgical removal of the ovaries is obviously much more invasive and comes with it's own risks and long term consequences. Given that the 3 monthly option is already in use, clinically tested and could ease the burden for many of us, I would really like to see equal PBS access for women. I'm curious, has anyone else looked into this and how to go about taking action?888ViewsSign in to react to this post17CommentsA solution to the prohibitive cost of Hyaluronic Acid
Hello I have been on Letrozole since February 2026 and have awful dryness in my vagina. I have had pretty good success with remedying it using Hyalofemme [Hyaluronic Acid] which if you get compounded in Australia costs $110.00 a month ! There are very few manufacturers here in Australia and recently one started advertising a product for around $40 a month but you need a subscription [no thank you]. I have found an online chemist in the UK which will ship me Hyalofemme (6 tubes for 6 months) for $100.00 !!! Each tube lasts 30 days. It is called Expresschemist UK. I also use organic coconut oil for daily lubrication. Kind Regards113ViewsSign in to react to this post1CommentSuffering with Letrozole side-effects weeks after coming off it…
I think it has been discussed a lot already.. sorry… 55 y.o stage 2 ILC with mastectomy, preventative mastectomy on other side, radiotherapy. Finished all by end June this year. But I just need some HOPE that Letrozole side effects will wear off eventually… After 5 months of taking Letrozole, and going ok, I suddenly had burning pain in my wrists, hands, knees, thighs, many tender to touch, was hobbling around plus on sore feet, not even being able to clear up the kitchen after hubby cooks.. Not able to complete a shift at work.. I tried exemestane six weeks after stopping Letrozole. But for only 2 days as my wrists burned even more. I’m now 7-8 weeks post Letrozole and trying to at least go to stretch classes three times a week, and go for walks. Still relying on regular Panadol/Nurofen, can’t clear the kitchen up in the evening or go to work. Just about collapse into bed at night to make everything stop burning. When will it ever end?!!185ViewsSign in to react to this post4CommentsTaking collagen powder while on Tamoxifen
Wondering if anyone can help point me in the right direction? I am wanting to take a collagen powder supplement while taking Tamoxifen. I asked my oncologist and he suggested I check drug to drug interactions online but I am struggling to get a straight answer. Next time I see the pharmacist I will ask them but wanted to know if anyone has personal experience. Thank you493ViewsSign in to react to this post2CommentsLetrozole question
I am newly diagnosed & on Letrozole to shrink the tumour before surgery on August 12. I’m 68 so well past menopause. My mind is spinning with it all. I’ve been reading about side effects & I know that we are all different. But I’ve read a few mentions of teeth. What is the side effects for teeth? I’m having a DEXA scan tomorrow as a baseline.284ViewsSign in to react to this post6CommentsLetrozole and dermatitis?
Hi all - I have been on letrozole for about 10 weeks now, following a lumpectomy and radiation for hormone positive ILC. Over the last couple of weeks I have developed a terribly itchy red rash over my legs and arms. My GP is investigating the cause, but I wondered if anyone else had experienced this as a possible side-effect of letrozole? I have seen other posts about rashes being a side effect of other AIs but not so much letrozole? thanks!201ViewsSign in to react to this post4CommentsHormone Blockers Weight gain & GLP-1s
Hi Everyone, I am 53 yeards old and 3 years into hormone blockers and am managing (barely) all the side-effects except for one. Weight gain. I have always been fit and active and I am working out more than ever and eating incredibly healthy and nothing seems to make a difference. I have slowly increased from a size 10 to almost a 14 since commencing hormone blockers. I have seen some medical evidence that GLP-1's at a low dose have been helpful for not just weight loss but also a reduction in other side effects as well. Has anyone else had a conversation with their oncologist regarding using GLP-1's and potential benefits? I don't like the thought of taking yet another drug but I am getting to the point of worrying about everything I eat and also cannot afford to keep buying another size up! If anyone has any info on this topic or knows of any specialists in this space I would appreciate it very much, Thanks!!1.1KViewsSign in to react to this post8CommentsExemestane and bleeding
I’m not sure where to direct my question about Exemestane and bleeding. I had small IDC removed via lumpectomy followed by 15 rounds of radiation. Due to possible interactions with other medications, I was started on Exemestane instead of Tamoxifen. It had been 6 months since my last period and menopause has confirmed via blood test. Now after six weeks on Exemestane I am having a heavy period, 215 days after my last one. I am not sure if I should talk to a breast care nurse, my GP, or my oncologist (appointment is in 6 weeks). If anyone has had a similar experience, what did you do and how did it turn out? I’m trying not to panic but this doesn’t seem right.124ViewsSign in to react to this post4CommentsTamoxifen - Periods
Hi there. I am now on my 5th month of 5mg of Tamoxifen ( DCIS diagnosis, 2 ops and 15 days RT later ),and have been regular like clockwork and periods have been less painful and lighter. However this month the period hasn't come. Context: I am 48 year old, and was going through peri M already before all my diagnosis in Sept 2025, but had to stop taking HRT immediately on the spot. I wanted to ask if anyone knows or has seen this as side effect where the Tamoxifen can stop your periods? I would be very happy if its the case ( no chance of pregnancy ) but as have had so much going on hormonally pre diagnosis and ops, and since, I get a bit confused as to what is going on with the cycles : ) Any insights or own experiences on this one do share? I am seeing my oncologist in Sept and my next period may start in a month...but had wanted to put the question out there to this lovely community.165ViewsSign in to react to this post1CommentHormone Therapy
I had a double mastectomy two weeks ago and need to take letrizole. I have also been told to have a bone scan and PET scan. I have a few questions, firstly, when should I begin taking letrizole, do I wait till I heal more or start now? I am worried about the side effects while I am still recovering from the surgery. I have the same question with the two scans, (bone density & PET) should I do those now or wait till I have recovered more from the surgery? I know I should have asked my surgeon at my last visit, but I was concentrating on her explanation of the pathology results and didn't think of it. The last 5 weeks since my diagnosis has been a rollercoaster of emotions and I still shake my head that I am where I am! I know that I tend to worry about the 'what ifs?' too much, and probably delaying all the inevitable instead of just getting on with it. Thank you for your advice.286ViewsSign in to react to this post7CommentsDCIS, single mastectomy, no hormonal blocking therapy
Hello , Please I am looking for information/comments/ personal experience of receiving no hormonal bocking therapy post single mastectomy. Ive had a single mastectomy for a high grade DCIS , two areas, 5 weeks ago. Im reading so much information about hormonal blocking agents . Im 59 years of age and ceased my HRT immediately when I received my diagnosis. (recommended by my GP and Surgeon) I have been informed that I do not need any hormonal blocking medication. Are the hormonal blocking agents effective ? Are they only used when radiation has also been implemented? Im a bit confused . Many thanks.196ViewsSign in to react to this post4CommentsLetrozole or Tamoxifin?
Hi Fellow Hormone blockers :-) Really need some advise , my situation 60yrs old with thin bones Had 15cms DCIS removed via mastectomy and a 5mm invasive cancer. The oncologist is giving me the choice between the 2 drugs for 5 years. If I was to go on Letrozole it will thin my already thin bones so would need to go on a drip 2 times a year with a bone strengthening drug in it also need permission from the dentist. Tamoxifin apart from the similar side effects it also can cause blood clots and uturus cancer, Im really conflicted. The oncologist is going to mail a lot of material out to me then in a months time we will make a decision. I really wanted to talk to the real people taking these drugs, your experience and if you have been on both your preference? Appreciate your help with this decision :-)318ViewsSign in to react to this post3CommentsCeasing hormone therapy
Hi Everyone. I am 43 and was diagnosed in October last year with Stage 1 ductal breast cancer in my left breast. I had a lumpectomy and sentinel node removal in November with clear margins and clear nodes. Completed a three week course radiation in January and started zoledex injections in December and exemestane tablets in January. Since late January I have had extreme pain in my right shoulder I’ve had an ultrasound, x-ray and a cortisone injection. My joint pain is quite significant and is really impacting on my lifestyle. I have pain in both shoulders, my hips and arms. I can’t get comfortable to sleep. I’ve been told that this all due to the hormone blocking therapy. I am seriously considering stopping therapy. I was pre-menopausal before commencing hormone blockers and feel that the impact of these side effects on my life outweighs the potential of reducing the chance of the cancer returning. has anyone here experienced the same and stopped treatment? If so did your side effects subside? Any information would be gratefully appreciated.310ViewsSign in to react to this post1CommentHormone inhibitor treatment decisions
Sorry this is a long post. 70 year old, between August 2024 to April 2025 diagnosed DCI, PR+, ER+, HR -, R partial mastectomy and reconstruction, radiation, Anastrazole(such awful, awful side effects ) 4 months then Exemestane 2 months. Completely crashed from side effects of Aromatase Inhibitors, had to stop multiple antidepressants in preparation for Tamoxifen, so crashed even further, quality of life so low only my family kept me here. Stopped Exemestane end of March couldn’t keep going. All this on top of Fibromyalgia, chronic pain, major long standing treatment resistant depression. Have been having positive ketamine pain management treatment and psychological support from onco-psychologist and with concerned calls from onco-endocrinologist and clearer mind realise have realised that i need to review my treatment decisions. I am still scared of restarting Exemestane but more afraid of Tamoxifen side effects. I’m due to see endocrinologist in 2 weeks to discuss what to do next but am appealing to you all to suggest some options or feedback so I go with as much information as possible.789ViewsSign in to react to this post15Comments
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