Hi Jolamine, 

Thank you so much for getting back to me. I have no intentions on stopping the tablets, I'm just so grateful there is something they can do. I was just wondering how long they would take to show symptoms. I know not everyone gets them, but I wouldn't like to think after a couple of weeks that I wasn't going to get any and then suddenly bang I've got some. At least i know 3-4 weeks now and it could take longer.

Fingers crossed I don't get too many. 
Kind Regards Ali

Hi Ali.P,

It really does vary. I got some very quickly - ie within weeks, but others took a number of years. I sincerely hope that you don't get too many. I hope that you are healing wel after your lumpectomy and that you get to start your radiotherapy shortly. We are always here for you.

Kind regards,

Jolamine xx

Thank you Jolamine. I'm healing really well thanks and found out today my radiotherapy starts on the 10th June for 2 weeks. At least I can see an end to the radiotherapy now. I've got everything else crossed that I don't get any major symptoms. I'm expecting the hot flushes, sounds like most people get them in some form. I will just have to wait and see. 
Kind Regards Ali

Hi Ali,

I'm glad to hear that you are healing well and that you now have a date for radiotherapy. The hot flushes and sleepless nights were my first symptoms, but there are some tricks to try and help to reduce these.

You will find that there's enough to worry about along your cancer journey without worrying about what might never happen.

Kind regards,

Jolamine xx

Hi Fran,

A very warm welcome to our forum. I am so sorry to hear that you are suffering with Tamoxifen. I have had 2 bouts of breast cancer and had cording after my lymph node extraction. The nurse specialist at the Haven used the myofascial release technique on this area and it improved dramatically. I was also prescribed Venlafaxine (an anti-depressant), as I was told that this reduced some of the night sweats. This helped too. 

I discovered my second bout exactly a year after my first diagnosis and changed over to Letroxole. This caused much more joint pain and eye problems, but was better for my emotional state. I stuck it out to the end and finished taking Letrozole in July 2017, after taking it for 6½ years. I found it easier to discuss my problems with hormone therapy with my breast care nurse, rather than my consultant and she was really helpful. They are always busy, so you may have to leave a message, but they have always got back to me quite quickly.

I am sorry to hear that you feel so unsupported. Now that you've found this forum, you need never feel that way again, as we are always here for you and, know first hand exactly what you are going through. Please keep in touch and let us know what you decide to do.

Kind regards,

Jolamine xx

Dear Jolamine,

Well done with your hormone treatment! That's really interesting advice. It's the emotional/mental effects of the big T that I couldn't stand. Maybe L would suit me better.  And yes the BC nurse has been a huge support in the past - I should give her a call. 

Talk about between a rock & a hard place! Did you have chemo and radio or non-Her2 so surgery and radio only? And both twice?! Well done with your journey. Keep you posted with mine.

x

Hi Franfran,

I was advised to have radiotherapy, but, due to various delays, I wasn't offered it until I was 11 months post surgery. At that point my oncologist still wanted to go ahead, but my surgeon referred me to two research specialists in radiotherapy. One gentleman thought that I might as well try it, but the other was quite sure that it would do me no good. He claimed that I should have had it within 3 months of surgery to be of any use. His arguments were much more supportive and I went with his advice. 

There are still some emotional effects with Letrozole, but I felt that they were better than with Tamoxifen. However, the joint pain was far more severe with Letrozole. I ended up having 2 knee replacements and 7 eye operations while I was taking this. Having said this, we all respond differently to these drugs, so you might be fine with Letrozole. Can I ask your age, as this can influence what treatments you can have? 

Give your breast care nurse a call and see what she suggests. Please keep us posted as to how you get on.

Kind regards,

Jolamine xx 

Hi, I have just read your post and am wondering how you are doing since you stopped the tamoxifen- I too am considering it, my life just doesn't feel worthwhile- I know that lockdown may have contributed as I started the drug just as lockdown happened but I just have to try something - did you gradually come of it or did you just stop? How long till you felt any benefits? 
thanks :)

Hi Tammy. I'm sorry to hear you're feeling this way. Perhaps keep speaking with your medical team and they can help with the side effects? This lockdown has been very difficult on many people. Are you aware of Macmillan cancer buddy? Macmillan pair you up with someone who is suitable and has been thru cancer - they ring you once a week for 10 weeks and as you know it helps so much to talk to someone who has been through it. I signed up for this and have a buddy and it has helped so so much.

I unfortunately am back on tamoxifen as my cancer came back in dec 2020. I've been reassured by my consultant that it wasn't due to me stopping taking tamoxifen. Remember each cancer and each person is different. I was just unfortunate enough to have a second cancer. I'm recovering now and fighting to enjoy my life.

Have you watched America's Got Talent? There's a lady who auditioned called "Nightbirde". She is the most inspiring and admirable person I have ever seen. Please do watch it and her interview. Remarkable!

I will say one thing - please do not make any decisions about stopping it until you have a discussion with your medical team. That is very important and ask many questions so you have it clear in your head so you are aware. Everyone is different. I hope you can find some relief to all this you are going through. There is help out there - we just have to ask. Please let me know how you are getting on.xxxx