I was a grade 2 invasive ductal cancer ER + PR positive HER2 negative, 33mm I had a lumpectomy x 2 and 3 weeks of radiotherapy. 
 

Will keep you posted 

Hi flowersorcakes How are you getting on ? I'm just settling on the awful Tamoxifen I started in February, it's been a slow exhausting journey. I'm happy to say after trying venlafaxine and being changed to a slow release Venlasov XL it has improved my life dramatically. I went back to work 3 weeks ago, I'm a painter and decorator and doing anything as physical as going up stairs I was soaking and exhausted . I'm feeling very positive being on this new med it's helped so much, I'm swinging from staircases now like my good old days. I'm still 2 stone heavier but it's a small price. Wishing 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

I am also an estrogen positive breast cancer sufferer first in 2017 on the right side and again most recently on my left side.

Its an amazing result you didn't need chemo or radiation but I can totally sympathise with the side effects from tamoxifen. The first time around I suffered a lot as you are but reached out to this forum (my godsend) and The Haven which set me back on the path I needed to be. It is extremely hard there is no doubt about it just hearing the word "cancer" and the rollercoaster of emotions one goes through but to have other symptoms crop up from any treatment you must do is hard to cope with.

Both times I've had a lumpectomy, sentinel node biopsy and radiation treatment. I made the choice to stop taking tamoxifen in 2019 as there is an nhs predictor tool that my onco gynae dr used to predict my risk if I came off tamoxifen and it was very low so we made the choice to stop. Now whether me stopping tamoxifen is the cause of my second cancer - even tho the consultant reassured me it isn't - I still do blame my choice a little. Each individual cancer is unique as it works with our dna and body so please don't feel my situation could be yours. I just wanted to let you know my experience. Having said all that, my second time of taking tamoxifen I haven't had nearly as bad a reaction as I first did but I do have a host of radiation side effects going on!

Please do speak with someone - the toll all this has on your emotions is very hard and different for each person. There are many support groups which can help and cancer research also has helpful information on their website as well as breast cancer now. My onco gynae told me that tamoxifen does affect everyone differently but that the symptoms do ease off.

Hang in there as you will hopefully be able to work through these myriad of emotions. It's a new way of life but you got this!

Hi, I've just started taking Tamoxifen 4 days ago. I was diagnosed with grade 3 ER and PR positive breast cancer in March and had a lumpectomy in April. I'm still waiting on my radiotherapy. I've felt very lucky not to be having chemo, but seeing how Tamoxifen is making everyone feel I'm now getting a little worried. Can anyone tell me how long before the symptoms start? And do most people get these symptoms. I'm keeping active at the moment and I'm really concerned this will change.

Hi Ali.P,

A very warm welcome to our forum. I just want to reassure you that not everyone has problems with Tamoxifen - some people sail through treatment. If there are side-effects, these can vary considerably from one person to the next. It normally takes 3-4 weeks for Tamoxifen to kick in, but the length of time varies before any problems arise.

Most hormone therapies carry side-effects of some sort, but don't pre-empt problems - you may be one of the lucky ones. I have taken both Tamoxifen and Letrazole in the past 11 years, as I have had 2 bouts of breast cancer and had side-effects with both. However, I would take hem again if I had to, because I am still here 11 years on and living a busy and fulfilled life. Surely the means are worth the end?

Kind regards,

Jolamine xx