Breast Cancer Now Forum

Hi, I am coming to the end of five years on Tamoxifen and have, unfortunately, suffered all the unwanted side side effects, including thinning hair. Thankfully, I have a fantastic stylist and have my hair cut and coloured (lowlights), once a month and have managed my short layered style all this time, but am hoping this will change coming off Tamoxifen  I also use Plantur69 Shampoo for menopausal women - it's supposed to help the hair I believe  - just one of those things I'm afraid .....  ... View more

I have been on Tamoxifen for five years in May with a year on Anastrazole which was dreadful. However, the last five years have generally been awful in respect of my quality of life and my once has agreed for me to come off Tamoxifen when I see him next month because of the list of side effects I have been enduring for all these years. I was expected to go on for 10 years but asked to push onto five and we settled on this to give myself the best chance. I think there is always that 'something' in the back of your mind about the cancer returning, but I like to think I've done what I've can for five years and would like to try and live my life a little now...  only a few more weeks now - counting them down ..... fingers crossed for the future  ... View more

My personal experience is that I took Tamoxifen for 2 and a half years and asked to change due to problems with cystitis and weight gain. I had heard there were a different set of side affects with Anastrazole but wanted to give things a go. For the first few months there was no change and in fact I managed to lose a few pounds in weight, but in January this year had a 'muscular' attack that was so dramatic I ended up in the urgent care centre at the local hospital! From this time, unfortunately, I must say that I have not had a good experience with this drug, with pain in my wrists and thumbs, no grip, fatigue, general joint pain and on particularly bad times, having to stay in bed in the mornings for an extra hour with a complete lack of energy. I wanted to persevere as I understood the drug had good results with regards to breast cancers but after a year I have today seen my consultant and been prescribed Tamoxifen again. The consultant said I should have gone back before with such severe side effects which also include raised blood pressure and cholesterol  - so more medication - so I think I will have to be grateful for the 'lesser' side effects of Tamoxifen that may come with changing back again..... However, I was reading that some women take Anastrazole for five years with relatively no side effects - so I am just unlucky I guess - but you can't say I didn't try 😇   I hope your changeover has been better than my experience and we all need to weigh up the pro's and cons Good luck with everything xx ... View more

For similar reasons, I changed to Anastrazole last October and for many months had few noticeable side affects. Unfortunately, it did not have the desired effect with the hot flushes and they continued to be a bit of a problem. However, after the new year I started to have the most awful pain in my shoulders/arms and back to the point where one day my sister took me to an urgent care centre but after tests they could not find anything specifically wrong. I now realise this was a first flare up of the side affects of the arimidex and since this time have stiffness in my knees/thumbs/wrists and elbows. My personal experience has not been good so far but I know other women who haven't had these problems so I think everyone has to judge for themselves and weigh up the pros and cons. Painkillers always come in handy and it's not forever ...... ... View more

Hi, Shelley61, I am 3yrs post lumpectomy with a further two surgeries for reconstruction, the last one a year ago, but still have quite intense pain in my armpit and 'tightness' at the top of the affected breast. Although I have told my breast consultant and plastic surgeon they do not seem concerned, only that my mammograms are clear (which they are). Sometimes the pain is to the extent where pain relief is needed and if at home, be without my bra, although this doesn't always help. I am due more surgery soon as the last didn't go too well and for all I know this may be the cause of the pain? So I don't really know why or for how long I have to suffer this, only that I feel guilty if I complain as I know I am luckier than a lot of other women, so tend not to make too much fuss. You do have my sympathy though. I think we feel that once it's done with we shouldn't have ongoing problems to deal with, I have enough with the medication side effects!! ... View more

I am 3 and a half years past treatment for my primary diagnosis and have finally been able to get on with my life, so found this the hardest thing to watch though of course brilliantly acted by Sheridan Smith and terribly sad for the story it told and the reminder that it could still happen to me. It is a wonderful story to tell for people who haven't gone through this and don't have an understanding of the feelings and processes that go along with breast cancer treatments, but again, brought me to tears from the moment she was in the consultants room. I will be back there myself on Tuesday for my annual check up and is the only time of the year I think about it now, but well done the BBC for such a wonderful drama and the family for allowing it 😔 ... View more

I am more than two years from finishing my chemo/surgery/radio, and it was only then that one by one my toe nails 'regenerated'!  It wasn't a great experience, but everything has settled down now and my fingernails are also in much better condition although they took a lot of patience and TCL.   It's taken some serious drugs to rid our bodies of this horrible disease, so if we're patient it works out ok in the end.. Good quality nail polish is always a must....   ... View more

Hi There, I have been on Tamoxifen for just under two years.  I was menopausal just before being diagnosed and since finishing my cancer treatment have managed to put on nearly two stone.  I am horrified and because of reconstructive surgery have not been able to do much in the way of exercise and also because of hot flushes - I only have to make a sudden movement and I break out into a sweat.  I am planning to go swimming when the last of the surgery heals in a few weeks, but am due to have the tmx changed for an AI switch in the future.  I dont know if thats going to help or not.  I know I have to stay on the tmx, but look dreadful and suddenly really old!!  Will try to go all out to get rid of some of it this year, but you get the feeling its all against you? ... View more