Tamoxifen - any positive stories?!

[Syudbx]

I was diagnosed with stage 1a, grade 2 IDC - had lumpectomy with clear margins, now on tamoxifen and about to start radiotherapy. I’m 34 years old with a five month old and a : year old, so I’m struggling a little bit! I’ve not had any side effects from the tamoxifen but I’m so so worried about everything I’ve read about it. Does anyone have a positive story about tamoxifen?

[Linnb23]

Hi, sorry you have had to start this journey. I had the same as you, but Grade 3 IDC and had the lumpectomy and full axillary clearance. I was started on Anatrazole for the 5 years and had 15 sessions of radiotherapy. I didn’t find radiotherapy too bad, just got a bit tired and a little bit of redness. I used E45 cream which I kept in the fridge and most of all I listened to my body and rested when I needed to. Just had my first mammogram and all is ok. There is a light at the end of the tunnel and stay positive and I wish you all the best as you start the next stage. Please keep us posted of how you are getting on. Xx

[Jowigs]

Hi Syudbx. Anyone would be struggling just having two young children, never mind having breast cancer and going through the treatment. Don’t beat yourself up, take all offers of help, I’m sure you’re doing an amazing job.I have been on tamoxifen for 2 years now. It’s not great and I have quite a few side effects. However, I know that’s not the case for everyone. Some people have no side effects at all and I hope that’s the case for you. Ultimately, it’s a life saver. I hope all goes well with the rest of your treatment and you can get back to just enjoying your babies. God bless.

[pegomh in reply to Jowigs]

Jowigs is right, you are doing great at this. I had bad side effects with letrozole and arimidex. I am doing ok with Tamoxifen, sweating a lot but I also live in TX. It’s manageable. I am praying it goes smoothly for you, sweets.

[Debs1962]

Hi it is sad to hear someone as young as you with BC, I too am sorry you are on the journey with us.

My hubbys cousin was on tamoxifen for ten years, now on an AI as she is older, she had very little problems to be honest with it.

I was 52 when I was diagnosed and post menopause so was put on an AI letrozole and I have been lucky, no noticeable side effects to be honest.

Take care

Deb

[Surviver]

Hi I have been on tamoxifen for 5 years the side effects I have are dreadful hot flushes, poor sleep, aching joints and tearful at times

I hope you have family to give you lots of support with your very young children

Good luck and keep well

Big hugs

Janet x

[JaneDoe18]

Hi how flipping awful - 5years of all that! You poor thing I am having t at the moment in chemo and have those symptoms so know how at times it makes you feel old before your time - my joints is knees so a right crock bumbling about. Sending big hugs! I did hear recently that acupuncture is amazing for hot flushes and it’s just 2 needles in your leg - worth asking local hospice. Sending tea and empathy

[lizzyHZ]

Oh my goodness it must be a very stressful and tiresome time for you all the ladies here are willing to offer support ..i had a lumpectomy nearly 2 years ago and 16 sessions of radiotherapy and take tamoxifen ..i have had very few side effects.initially slight hot flushes and some joint ache .however it seems that when i started to get my meds from a different chemist and it was from a different make/brand they disappeared...so my advice would be if you do get some unpleasant symptoms try a different make ..i hope you continue well with your recovery xx

[julesab]

I was diagnosed 2010 had mastectomy, chemo and radiotherapy then reconstruction. I commenced tamoxifen and I was fine with it 👍👍👍 five years they said but then stuck me on letrezole for ? Another five. I still ok good luck with your journey 😎😎

[Trumps]

Hello. I am so sorry you are having to go through this especially with a young baby to look after. I had a similar diagnosis and the same treatment as you and am now a year and bit down the line. I delayed starting on the Tamoxifen until after my rads had finished as I felt it might all be too much for my body to adjust to in one go (Onc agreed it was a good idea). Radiotherapy was not too bad, I just made sure I rested when I could. It was during the school holidays but the children were great and left me in peace . Try to rest when the baby sleeps don't be tempted to run around doing chores as the priority is you and your wellbeing. Also make sure you drink lots of water throughout the day. With regard to the Tamoxifen, I have not found it too bad at all. Initially I was given the Wockhardt brand but I found it made me feel quite low. I did some research online and found that the brand Teva seems to be popular so I asked the chemist to order those for me. I definitely noticed a big improvement in my mood and have had few side effects. I find taking the tablet first thing in the morning works best for me. Good luck with your radiotherapy, you are almost at the end of your treatment, accept offers of help and be kind to yourself..:there is light at the end of the tunnel. Xx

[BarbRennie]

I've been on Tamoxifen for 5 months, and I have found that a lot of the side effects - like moods, sleep disturbance, achiness, night time leg cramps etc are quite transitory. they havn't become permanent - yay!

I did however, switch to taking tamoxifen in the morning - instead of at bedtime - and my sleep went back to normal

[Syudbx]

Thank you all so much for your replies. It’s amazing how supportive an online forum can feel. You all sound so brave and I’m so sorry you’re going thru this... but I have no doubt we will all come out of the other side stronger. I’ll keep you posted and thanks for all your advice

[nanda29]

My mom took it for 10 years and never had any issues (or reoccurrence), my sister has been taking for 2 years also with no issues! I start in a few weeks and assuming it will be the same for me. To be honest, I avoid looking at negative experiences to prevent negative placebo...

[Syudbx in reply to nanda29]

Ah that’s such a reassuring and positive post! Thank you! I’m sorry your family is dealing with so much breast cancer but sounds like a positive attitude is doing wonders. Are you taking it for preventative measures or have you been diagnosed too?

[nanda29 in reply to Syudbx]

I was diagnosed too, just finished chemo last week 💪 and I have been doing great!

[Sandy108]

Good Morning,

Firstly I'm sorry to hear that your on this journey, it's a difficult one to follow. I had stage 2, grade 2 IDC with node clearance, I underwent a mastectomy with immediate reconstruction, I didn't have radiotherapy but had 6 cycles of FEC chemo and now on Tamoxifen. My kids were 5 and 1 and I was 35 when diagnosed, it was hard going and extremely tiring but they kept me going to be honest when I just wanted to lie in bed and ignore the world around me.! In regards to the tamoxifen, I struggled with hot flushes and a Chinese for the first 6months but it wore off and now I'm 2yrs into taking it and have no side effects, unfortunately it seems to effect everyone differently.

Sending you lots of positive vibes and I hope all goes well with the rest of your treatment

Sandy xx

[Gail_evs]

Hi , yes the side effects are awful BUT IM ALIVE ...9 years on !!! A positive result I’d say 🤞🏻🙏🏻

[Syudbx in reply to Gail_evs]

That’s wonderful! Worth the side effects! What was your original diagnosis?

[Gail_evs in reply to Syudbx]

Grade 3 , 4.5x3.5cm misdiagnosed for 10 months, chemo and radio xx

[Robin152]

I have been on tamoxifen for 4 months and no side affects. I had a lumpectomy with 16 radiation treatments and started the drug right after that. I think we only hear the bad stories and not the success stories. I will say so far so good

. Wishing you the same results

[Surviver]

Don’t worry to much as all of us on here are different so not everyone gets the same symptoms

[Winnie13]

I’ve found these posts alone have helped me realise I’m not losing the plot. I was told my side effects were severe from the Tamoxifen (insomnia, joint pain, hormonal, leg cramps). It seems that a lot of you have experienced the same). Thank you so much!! I have just changed the brand, so fingers crossed the symptoms will reduce or even go away.

Xxx