Afraid to start taking Tamoxifen

Hi everyone this is my first time posting so I hope I’m doing it right :face_with_hand_over_mouth:I had a WLE and SNB in September following my BC diagnosis in August. Thankfully everything’s gone to plan and I’m waiting to start a course of radiotherapy next month. At my Oncology appointment last week I was prescribed Tamoxifen. I’m a 51 year old overweight woman with bad knees and I haven’t been able to bring myself to take that first dose yet. Talk of menopause and HRT is everywhere I look. The thought of struggling without having the option other women have frightens me. I’m also concerned about the heightened risk of blood clots and stroke as my mum died from a stroke :cry: I don’t want to appear ungrateful for the treatment I’m receiving & I feel very blessed that it was caught early. I’d love any advice or input regarding this. Thank you :blush:

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I would talk to your oncologist about your fears. Tell them about your family history and why you are worried. I’ve been on tamoxifen for 3 weeks now, so far, so good. Good luck xx

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Hi there. Totally understand where you are coming from. I had my op end of October and like you follow up is tamoxifen and radiotherapy. Women in my family tend to go through menopause late…so the thought of those symptoms at 43 is stressing me a little :grimacing: I am grateful to have this treatment though but anxious about the timing. My radio is in January probably. Nurse seemed keen for me to get cracking but heard something about it making radiotherapy less effective…not sure if that is actually true or just scare-mongering. Going to get some more advice and possibly just get going soon. Hopefully winter is a good time to get hot flushes out of the way :grin:

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I think many of us feel the way you do right now . I can tell you I’ve had many cancer drugs that have sat on the bedside table and I’m thinking tomorrow , I will begin tomorrow . Then tomorrow comes and I think just one more day​:rofl:I took tamoxifen for five years and then letrozole for a further five years and I lived cancer free again for twelve years . When you read all the possible side effects it’s frightening but remember you may get some but you may get none . Tamoxifen however may keep you well. You will be monitored and if you have concerns try and discuss them with your oncologist, Macmillan or others on this site that may know what you are going through. Best advice I personally can give with tamoxifen is if you struggle with the side effects try switching brands . That can sometimes really help. :heart:

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Hi @loobers, firstly welcome to the forum. I hope you find it a safe, welcoming and helpful space. It is completely understandable to be feeling a bit afraid and you might find it helpful to speak to one of our nurses on the helpline 0808 800 6000 :heart:
We also held a Facebook Live on menopause and breast cancer last week which could be helpful. Here is the link:

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Thank you so much for your reply. It’s good to know I’m not the only one who feels like this. I think I’m going to start taking it and monitor myself carefully.

Thanks for your reply. It’s like a whole new world after a cancer diagnosis isn’t it :pensive: I’m going to start taking it and monitor my side effects carefully. Good luck with your treatment :blush:

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It’s good to hear that your experience of taking Tamoxifen is positive. It makes me a bit less anxious about taking it - thank you :blush:

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No problem, good luck x

Hi, I’m 45 and taking tamoxifen- no major side effects yet! I had chemo then radio and then started the tamoxifen. I actually had a couple of hot flushes on the chemo, but so far not on tamoxifen. Good luck with your treatment. X

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Hi loobers
After double mastectomy I had radiotherapy (many weeks later than should have been down to sheer backlog of patients, so may have missed the boat with any rogue breakaway cancer cells). I then probably put myself at slightly further risk by putting off starting hormone therapy for 5 months … because I was TERRIFIED about the possible side effects (one was extremely rare, but would have been particularly devastating to me, and naturally I convinced myself this would happen).
The upshot is, after 10 months of taking it, I have just suspended my daily Anastrozole pill (an AI). I have an appointment with oncologist in a week’s time to discuss other drug options, the risk of taking none etc. I was getting increasingly debilitating side effects. Nothing absolutely impossible, but the combination of ever worsening bone/joint pain (my right hand now very painful to use, and my hips and thigh more troublesome than before), along with the disturbed sleep and demotivation, began to take its toll and get me down. I seemed to tolerate the meds reasonably well at first but the cumulative effect eventually made me feel very old. (I’m 63; was used to being very young for my age.) I am waiting to feel better but the hand pain remains bad. I’m thinking “Is this permanent damage, would my mild arthritis have increased at such a gallop anyway, or did the meds accelerate that progress?” Basically, each person reacts individually to each different drug so one can’t advise another. Being given choices about every aspect of treatment (including the level of surgery) was unexpected and a minefield of information and indecision. I would really grill your medical professionals (the more specialist the better - ie oncologist re the Tamoxifen) about all aspects: the baseline risks of recurrence/metastisis, the %age of reduction in that risk by taking hormone therapy, the common side effects and the not so common. The hardest thing IS that it’s our choice in the end. Sorry not to offer banal words of encouragement and optimism, but it is the tough truth of our situation that we must deal with. I wish you the best of luck in making your decision. I’m right there with you in spirit as you do that. Don’t forget, you can always review your choice down the line. It’s probably worth seeing how you get on with the meds for starters. Even the scientists don’t have crystal balls, sadly.

I call it medical top trumps. I have actually been prescribed Anastrozole and as a lady who already has weakened bones and a slightly raised cholesterol and episodes of depression, the common side effects are quite a worry. However i guess we have to make priority choices and currently my cancer is the priority. However I talked about my worries with my breast care nurse and have been assured that I will be offered a bone scan in six months to check my bone health and if needs be adjustments will be made as other options are available. She emphasised that quality of life s a huge consideration too, but asked that I commenced the drug and then it can be reviewed depending on my reaction to it. Its always worth that chat. the breast care nurses are very knowledgeable.

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I was 52 ( a year ago ) very over weight when I started taking tamoxifen . I am still slightly irritated by my friends and colleagues discussing hrt and the menopause !! They just don’t seem to get it !! I think I am pretty much used to it now . I did feel quite tired initially but so difficult to know whether it was that or the radiotherapy . I have the same hot flushes I had before taking it . I have no idea where I am in my menopause but as long as I don’t get periods I don’t care . I think the benefits do outweigh the risks that’s why for me it was the right thing to do . Get as much information as you can and make a decision . It will be your decision and you can then stay in control …

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Hi, completely understand your worries. At 48 I get annoyed with people saying- well you would have been entering menopause soon anyway! Also super scared about all the symptoms but as said above- priority is cancer treatment. So will start after chemo in February (oncologist will give me a break of one month after end of chemo) and see how it goes and try to deal with each symptom as it comes. Have also heard that changing brands might help… to be honest have been dreading it for so long since my diagnosis that part of me just wants to get on with it to stop all the uncertainty…

Also on strokes- lots in my family as well and blood clots. I was offered a genetic test to see if blood clots are more likely and if so might be offered something else than Tamoxifen (with worse side effects). So hoping that is not the case.

Good luck with your decisions - we all have different reactions- but good to know we are all in it together and can reach out when we are feeling a bit blah…

xxx

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Thank you so much for your reply @MistyK . It’s so good to have this forum where we can talk about our fears honestly. It’s so hard making these decisions - there’s a lot to weigh up. My husband says I’ve had cancer that’s a reality the other potential side effects might not happen. It’s not always as easy as that though!

Thanks for your reply @gillid you’re right - it is a case of prioritising. It’s so hard but ultimately stopping the cancer returning wins.

Thanks for replying @evmel it’s been so helpful for me to get other perspectives and to realise I’m not alone in my fears.

Hi @Louise07 thank you for your reply. It doesn’t help that everyone seems to be obsessed with menopause and the ‘miracle’ HRT. I have people dismissing my fears of the medication who themselves are on HRT and wouldn’t be without it! Thank you for mentioning the test regarding a heightened risk of blood clots - that’s really useful to know

Hi Welcome to the forum, it’s so good to hear everyone’s views, I had Lumpectomy and radiotherapy then put on Tamoxifen on it for several months but made all the vagina skin week and bleed also infected, before coming off of it I tried to get a different brand as suggested on here but chemist Couldn’t get any other so I came off on my own back as couldn’t stand it any longer, did a lot of research which I think is important to help guide us, and after my doctor wrote three times to Oncologist was put on Anastrezole which I heard was good , but now having the pain as a couple of ladies has mentioned all bones arms, hips, thighs, and not sleeping
Asked for bone density which now have booked , so I just think monitoring your own situation and speaking to your GP or Oncology if not getting on with meds.

Hi @Preston I’m sorry to hear you’re still struggling with these side effects - I hope things improve for you. I’m still plucking up the courage to start taking my meds!

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