Struggling with Tamoxifen side effects
Hi All , My name is Christine, I have been on Tamoxifen now for 2 years and have always struggled with the side effects of Tamoxifen...I get them all! I have had 1 breast removed after being diagnosed for a second time with breast cancer 2 years ago.The first time 10 years ago I underwent radiotherapy ... I'm 48 yrs old. I am struggling with: Hot flushes Aching legs Struggle to keep weight off no matter how much exercise i do moodiness loss of libido fuzzy headaches generally changed me to feeling crap daily Interrupted sleeping patterns Constantly going to toilet I have spoken to my doctor who suggested anti-depressants which helps with the hot flushes but i am reluctant to take them due to other side effects. I have suggested stopping Tamoxifen to my doctor who advised it would reduce my life span by 2-3%. I have a friend in a similar position as mine and she stopped them with no issues to date (8 years) and is urging me to stop. Does anyone suggest alternatives or make comment if stopping Tamoxifen is irresponsible? Any help or suggestions are much appreciated. It is really affecting my life, my personality, my thinking and made me a completey different person .. I was once strong physically, mentally and spiritually ......its also affecting my husband..anything he can take?..lol Christine xx
Zoladex & Letrazole or Tamoxifen or Remove ovaries + Letrazole
Hi all :) Firstly, this forum is amazing and I am so grateful for it and all of you who take the time to share and respond. When you feel like no one else can relate it really just gives one comfort. Im 41, was HER2 positive, chemo & surgery done. Mid way through radiation. I have been on Zoladex from during chemo (8 months) Chemo side effects were minimal and it was effective, I perhaps did not notice side effects and was running on adrenaline or in survival mode. Now that, some time has passed I have noticed some side effects that are bothering me and want to get off Zoladex but chatting to my oncologist about it, her recommendation is to stay on zoladex Bone pain, fatigue, hot flushes, irritability, disturbed sleep, belly fat, weight gain :( are the side effects I have been experiencing. Not to mention the injection can be painful. I have to have herceptin for the next year every 3 weeks and zoladex every month for 5 plus year and the letrazole for minimum of 7-10 years. These are my protential options Zoladex & Letrazole Tamoxifen Remove ovaries + Letrazole I guess what I am looking for is to hear about your experiences or route you took and whether the symptoms subside or anything to manage them. Does eating better and exercise really help with the weight gain or is it inevitable? Look forward to hearing from you. Feeling overwhelmed today
Tamoxifen side effects
Hi everyone, I'm new to both BC and this forum. I was diagnosed with invasive LC (triple neg) and LCIS (hormone pos) in Oct 22, aged 43. I've had WLE, chemo and radiation. Am now on baby tamoxifen 5mg. First few weeks were ok but now I just feel like crap. Fatigue, nausea, heavy feeling in my pelvis, Aches and pains, head aches. Is this all normal and anyone else have the same? Am a bit paranoid it is not the baby tam but something else...the anxiety is a killer!
Tamoxifen - feeling down
I have been on Tamoxifen for a little over a month. Initially experienced period like cramps (I am 60 so forgot this feeling), tiredness & discharge which have subsided. For the last week my mood has been from being agitated to feeling low & sad then completely well balanced. Is this normal? How long will this last. Also should I just stop taking it? My cancer ended up being a grade 1 contained and all removed. I know I need to see my oncologist but wanted to know what others have done in a similar situation.Hormone Therapy advice for young women who want to have children
Hi everyone 😊 I’m seeking some advice on what hormone therapy is best for younger women who want kids in the future. I have Grade 1 multifocal IDC+DCIS, 80% hormone positive, ER- cancer & I’m premenopausal, with no children. I was told after 2 years of hormone therapy I can try to fall pregnant (…but am hoping 1.5 will be enough?) I have been given three options for hormone therapy: •Tamoxifen only •Zoladex + Tamoxifen •Zoladex + Exemestane (Aromasin) All offer similar coverage in regards to my type of cancer, but I was wondering if there are any differences in regards to future fertility? ie. longer detox periods required before falling pregnant, or potential fertility issues after long term use, eg Zoladex or Exemestane? I have also read that Exemestane (Aromasin) is an *irreversible* steroidal aromatase inhibitor. I don’t want to be on anything that could irreversibly damage my oestrogen production.. Fertility-wise, does anyone know if this is something to avoid until after having children? I’d really appreciate any advice & tips for having the best chance of getting pregnant in 2 years! XZoladex immediately after IVF
Hi ladies, I was wondering if anyone has had their Zoladex injection straight after an IVF cycle? My lymph nodes were clear so I don’t need chemo, but my oncologist wants to put me on Zoladex & Aromasin for 5 years, (with a break after 2y to have children - I’ll be 38/39). I am almost through an IVF round to freeze my eggs & was wondering if it’s healthy or safe for your ovaries to be hyper stimulated & then shutdown immediately afterwards. Or is it better to wait a few days/week for them to return to normal before starting Zoladex? None of my specialists seem to be communicating with each other, so I’m finding it difficult to know the urgency or safety around the issue. I don’t want to damage my fertility for the future, or increase my recurrence chances.. Would really appreciate any advice! *** A bit of background on my cancer: I’m 36 & I have Hormone positive (80%), HER2 negative breast cancer, ki67 16% (3 tumours in the right breast). I had a single nipple & skin sparing mastectomy with an expander (in preparation for radiotherapy), 10.5weeks ago. My breast surgeon got clear boarders and tested 4 lymphnodes which were also clear, so seemed to think I would need no further treatment, (which I found unusual for early bc). My surgeon then took 3 weeks to seek a multidisciplinary meeting with an oncologist & radiation oncologist, after which she said I’d need endocrine therapy to be safe, but no longer need radiotherapy. It took 8 weeks after surgery to get an oncologist appointment - and now I am starting IVF, then endocrine therapy next week. It’s been very difficult waiting around, without being given much information. (Perhaps I’ll post another question, asking if such slow, conservative aftercare is normal!)
Drs have conflicting views..
Hi all, really appreciate any advice on this one, have no idea which way to go. Had hormone receptive tumour, small 1.1cm, did surgery, radiation... then medical oncologist said need no more treatment..this is contrary to surgeon, gp and radiation oncologist who all think hormone therapy (Tamoxifen) is necessary.. but won't stand those opinions up to medical oncologist. Went back to med onc, asked to go on hormone therapy, I want to do everything I can to prevent bc coming back. He said side effects can be brutal, only improves chances by 1%, not worth it, if it comes back deal with it then... was horrid in his words, acted like bc was a nothing. He was a complete pratt. Anyways I got script, Tamoxifen, doing pretty good, only side effect really is dizziness...so am blessed compared to most... however dizziness quite bad, had 3 falls now, in last fall fractured cheek bone and multiple cuts and grazes. Went back and asked for some medication for dizziness side effect. Got told... Tamoxifen not worth it, just stop taking it... like wtf... I wasn't complaining, I want to do everything I can to stop this dreaded disease recurring, just needed a hand with the side effects. I'm scared to not take Tamoxifen, feel like I wouldn't be helping myself.. I know its not a guarantee but surely buying yourself a bit more of a chance is better than doing nothing.... drs have got me really confused and acting like I'm bringing side effects on myself. Is anyone else with hormone receptor tumour doing hormone therapy... or have you also been told side effects outweigh doing it. I had thought HT was pretty standard. Can I also throw into the mix I've had 2 melanomas as well as multiple squamous cell carcinoma skin cancers, so clearly cancer cells are quite prevalent in my body in different forms... hence whilst trying to help myself with this bc. Would so appreciate hearing anyone else's story on what their oncologist has got them doing... Many thanks for taking the time to read this... 😊To remove ovaries or not ??
Hi I got diagnosed with BC late last year aged 47 .Had lumpectomy in January this year followed by radiotherapy.Now on Tamoxifen.Had a Mirena in place for heavy periods which I had removed at the oncologists recommendation.Fast forward 5 months on Tamoxifen and having periods from hell! Saw gynaecologist yesterday. I need to make a choice between endometrial ablation or full hysterectomy with removal ovaries. My grandmother died of ovarian cancer at 54 years. I’m waiting on genetic testing result but as I understand even if negative it’s no guarantee as we still have a lot to learn about genes. Mum had full hysterectomy about my age ( no cancer found) but was able to take HRT for 7 years.So I’m really trying to weigh up the risks and benefits . Any advice/ experience would be appreciated I have changed my decision a few times already Thanks in advance x -
Down and depressed
Hello I started on tamoxifen for a few months and then was put on Letrozole after I had my ovaries removed. After 3 months I was taken off Letrozole due to severe side affects of joint and muscle pain I had a 3 month break which by the end of 3 months I was back to being able to go for walks, do stretches losing weight all the things they tell you to do to help reduce the risk of cancer coming back. I was then put on exemestane I took this for four months and even though the aches and pains were not as severe as the Letrozole they were increasing and happening often so have stopped taking the arimidex. I am now back on the tamoxifen and it’s been just over a month I have been able to go on my walks and do stretches, I have had really bad fatigue though and usually when this happens to me I go and sleep and would be ok the next day but this fatigue now lasts for days, I get depressed about this because I can not do anything and I am feeling very stressed out as I really don’t want to keep living like this for the next five years, I am trying to do all the right things to help my chances in surviving but the hormone blocking treatment would no doubt be the hardest part of my cancer journey for me ,,,, please someone tell me there is light at the end of the tunnel....
