Hi there. I've made the decision just last week to come off tamoxifen after surgery, rad treatment and 2 yrs of taking tamoxifen. My risk is 32% - to me that is low enough to get some quality of life back. I have seen a tiny improvement but it's still early days. Back to see consultant in 5 weeks. He's meant to be country's leading expert and when I told him of my symptoms (very similar to all) he said tamoxifen isn't cause. Yeah right. 

There's a new tool out now designed by an American doctor which when all medical info is inputted it tells you the risk over 5 years then 10 years. They've also discovered breast cancer is as unique as a person's DNA- that's simply put. You have to read whole article

scienceblog.cancerresearchuk.org/.../

I am happy with my decision but you have to decide what's best for you and your body/situation.

Hope it goes ok and wish you well.

Hi im having same symptoms and my oncologist said tamoxifen dosent cause joint pain so I stopped taking it for 4 weeks no pain but got advised to keep taking it until my 10 yrs is up I had stage 3 aggressive carcinoma with lymphnodes effected ....I have no quality of life I take this drug I add pain relief anti depressants and all others ....stop taking it I dint have to take any its madness wish there was something holistic I could do instead ive been looking into CBD oil take care everyone stay safe xxxx

Hi there ..

Sinse I wrote on this thread earlier, i had to stop tamoxifen as I had no quality of life .. even with my stenosis and arthritis... I dreaded every day ... but I did my homework first ... the percentage of it stopping more cancer was ... i was informed about 3 to 5 percent ... l knew for me, I had to stop it .. I did it slowly over 3 weeks ... I've not looked back ... it was my decision and I promised myself not to regret or look back ... now I have the "normal " pain I had before but at least I have a lot less pain ... 

I would never advise anyone to stop ... or carry on ... I'd say ask for yourself the percentage and make your own choice ... l do wish the company and cancer research ( all reserch) would do more to talk to those of us it effected so much ... this comes up so many times on here ... 

Whatever you decide my heart goes out to you, knowing the bone and joint pain it brings ... Chrissie...

Thankyou it is awful im only 45 feel about 80 my first grandchild is due i just want to be normal again im so fed up with it ...I have a oncology appt in 2 weeks im going to ask what percentage is dont think I can do this for another 8 yrs xxx

Hello,  I had a mastectomy last december.  Post surgery the results were good: clear margins and clear lymph.  Turned out the tumour was a mix of DCIS and a G3 infilltrating.  ONCO dx test score was low 8 so no chemo & no radiation.  I was so releaved and grateful and was really getting back on my feet.  Then I started my tamoxifen.  I was already on a no dairy no soy no caffeine diet to reduce estrogen.  The first few weeks were okay then I got a skin rash followed by severe insomia after 6 nights I couldn't cope & stopped & went to my GP.  She aggreed to me halving my dose & contacted my consulant.  He was adamant that I stick to the full dose.  My GP thought it was still something I could work up to.  I've been on the half dose a few weeks now & just feel depressed, tried, weepy, crabby.  Making sure I get sleep is a big issue.  I am really not sure I can live like this.  I don't know myself.  I feel lucky to have got off lightly treatment wise or I should say I felt lucky.  It's really challenging to feel positive right now & 5 years feels like a very LONG time

Hi Finn,

A very warm welcome to our forum.

I am glad to hear that your cancer was a low grade and you were fortunate enough to not need radiation or chemo. I am sorry to hear that taking Tamoxifen has been such a challenge for you. It can be for many.

I have had 2 bouts of breast cancer in the past 11 years. I had a lumpectomy firs time around, followed by Tamoxifen. I took this for a year before discovering another lump in the same breast and had a double mastectomy, followed by Letrozole for nearly 7 years. I stopped taking this in July 2017.  I am not a doctor, but from what I have read here over the years, all treatments cause side-effects of one sort or another. Those who avoid any at all are few and far between and are very fortunate.

Has your Gp discussed maybe taking a mid anti-depressant for a short while? This might also help with your sleep. It doesn't sound as if your consultant is being very helpful, but I can understand that he will be keen for you to have this treatment when you haven't had any other form of cure. Have you tried discussing how you feel with your breast care nurse? Sometimes they can be more helpful in suggesting practical ways to overcome some of these problems. They are also often easier to get hold of than your consultant.

If all attempts to lessen the side-effects fail, there are other hormone therapies that could be used instead, but these can cause other side-effects, which can often be more severe. I was advised to have radiotherapy after my first operation, but due to circumstances at the time, I never had it and din't have chemo either. I looked on my hormone therapy as the one tool that might help to keep me alive and, despite the many side-effects I suffered, along with 2 replacement knees and 7 eye operations, I am glad to be able to say that it has done its' job. I am still leading a different life, but a busy and fulfilled one.

Has anyone mentioned the Moving Forward classes run by Breast Cancer Care that are available to people recuperating from cancer? They haven't been operating face to face during the pandemic, but should be starting up again soon. These are run throughout the country. There are a number of similar classes also available and all are free of charge.

There are also a number of walk in centres that offer alternative therapies such as Reflexology, Indian Head Massage, Reiki and a host of other treatments. Places such as Maggies and the Haven offer these services, but there are a number of local cancer centres offering similar services. These drop in centres always have a cuppa and biscuits on hand if you fancy a chat and you can make an appointment for counselling if you need it there too.

Your GP, Practice Nurse or Breast Care Nurse should be able to put you in touch with services in your area. Listening to music before you go to bed or practicing mindfullness can also help with your sleep. Cancer treatment is not a walk in the park, but it is 'doable' and is certainly better than doing nothing at all. The decision on whether to continue with it or not is totally up to you. It has to be your decision and, yours alone and, it has to be a decision that you are going to be happy with for the rest of your days, so please discuss some of the ways of dealing with this before you throw in the towel.

I sincerely hope that you reach the decision that is right for you. Please keep in touch and let us know how you get on. Remember that we are always here for you.

Kind regards,

Jolamine xx

Hi Finn,

A very warm welcome to our forum.

I am glad to hear that your cancer was a low grade and you were fortunate enough to not need radiation or chemo. I am sorry to hear that taking Tamoxifen has been such a challenge for you. It can be for many.

I have had 2 bouts of breast cancer in the past 11 years. I had a lumpectomy firs time around, followed by Tamoxifen. I took this for a year before discovering another lump in the same breast and had a double mastectomy, followed by Letrozole for nearly 7 years. I stopped taking this in July 2017.  I am not a doctor, but from what I have read here over the years, all treatments cause side-effects of one sort or another. Those who avoid any at all are few and far between and are very fortunate.

Has your Gp discussed maybe taking a mid anti-depressant for a short while? This might also help with your sleep. It doesn't sound as if your consultant is being very helpful, but I can understand that he will be keen for you to have this treatment when you haven't had any other form of cure. Have you tried discussing how you feel with your breast care nurse? Sometimes they can be more helpful in suggesting practical ways to overcome some of these problems. They are also often easier to get hold of than your consultant.

If all attempts to lessen the side-effects fail, there are other hormone therapies that could be used instead, but these can cause other side-effects, which can often be more severe. I was advised to have radiotherapy after my first operation, but due to circumstances at the time, I never had it and din't have chemo either. I looked on my hormone therapy as the one tool that might help to keep me alive and, despite the many side-effects I suffered, along with 2 replacement knees and 7 eye operations, I am glad to be able to say that it has done its' job. I am still leading a different life, but a busy and fulfilled one.

Has anyone mentioned the Moving Forward classes run by Breast Cancer Care that are available to people recuperating from cancer? They haven't been operating face to face during the pandemic, but should be starting up again soon. These are run throughout the country. There are a number of similar classes also available and all are free of charge.

There are also a number of walk in centres that offer alternative therapies such as Reflexology, Indian Head Massage, Reiki and a host of other treatments. Places such as Maggies and the Haven offer these services, but there are a number of local cancer centres offering similar services. These drop in centres always have a cuppa and biscuits on hand if you fancy a chat and you can make an appointment for counselling if you need it there too.

Your GP, Practice Nurse or Breast Care Nurse should be able to put you in touch with services in your area. Listening to music before you go to bed or practicing mindfullness can also help with your sleep. Cancer treatment is not a walk in the park, but it is 'doable' and is certainly better than doing nothing at all. The decision on whether to continue with it or not is totally up to you. It has to be your decision and, yours alone and, it has to be a decision that you are going to be happy with for the rest of your days, so please discuss some of the ways of dealing with this before you throw in the towel.

I sincerely hope that you reach the decision that is right for you. Please keep in touch and let us know how you get on. Remember that we are always here for you.

Kind regards,

Jolamine xx