Breast Cancer Now Forum

Absolutely JD! No guarantee either way and percentages are just statistics.  That's why I started this thread, why I've stopped all hormonal tablets now and declined chemo. After 4 years, I am going to end my input here and forget BC as much as possible.  Love life! X ... View more

Hi Arla I have taken Calcium since my journey with endocrine therapy started. Even after stopping Anastrozole after 10 months, switching to 3 years Tamoxifen, I still take it. Have stopped all hormone pills now and have teeth problems even with the Calcium. Latest is high fluoride toothpaste! The journey continues.. Not sure that helps! Good luck   ... View more

 I have a similar problem with severe pain and weakness in both hands at 63 due to joint damage after anastrazole.  Hip arthritis too. Currently weaning myself off everything. Had Stage 2 with 4 nodes. Decided 3 years of these tablets will do for me a very personal decision, but good luck to you. ... View more

Hello Bevio I can really relate to your problems with Anastrozole and your history sounds much like mine. I'm 62 and was on the evil pill from July 2018 until May 2019. I too decided I was almost crippled by the side effects: I could hardly stand up alone and my hands were also getting more and more useless. I did speak to my BCN and stopped after 10 months, break for a month and have been on Tamoxifen since. As I was Grade 2 with 4 nodes and had declined chemo, I was determined to take the pills, otherwise would have given up much earlier. BCN was happy to change and I'm told there is hardly any difference in efficacy. My movements are much better (within 2 months), but my thumb is still "wrong" and painful at times now 18 months on TX. Flushes are much less, but still have them. For others, I have a close friend who had Stage 1 at 52 and is now on Anastrozole and her journey seems much less painful. We're all different, but there is always a choice. Best of luck   ... View more

Hi Just to let you know, I struggled on Anastrazole with crippling joint pain. BCN advised changing to Tamoxifen after a 4 week break to clear my system. Best thing I could have done and Cons advises there is little extra protection from A compared to T, just happy that I stay on some form of endocrine treatment.   Joints took a few months to settle. Good luck ... View more

YES for me lmc.. "Only 10 months" 😣 on Anastrozole and months before the bone pain was gone. Further 8 months on I just have a niggle in the thumb. Still got flushes but not night sweats.  ... View more

Once you are considered to be post menopause, the current protocol is Anastrozole.  While A is apparently slightly more effective in preventing recurrence, some of us just cannot tolerate it. My symptoms were just like Braindoc's. I was really determined and managed to get to 10 months before deciding to stop. BCN agreed and after 6 weeks off, I started Tamoxifen. 7 months on the bone pain is gone and apart from hot flushes I don't feel anything like the crippling side effects on A. I'm 61 and feel that young 😉 again.. not 91 like I did! (By the way chemotherapy just means use of chemicals to alter the body's natural processes to aid treatment. Pill form or infusion. Just words really but it's known as "endocrine therapy ") Happy New Year!  ... View more

Hi. Just to let you know that I was 59 when diagnosed. As already post menopausal the hormone treatment recommended for me was Anastrazole. I couldn't tolerate it. Managed 10 months as determined to take it. I was so bad, BCN advised me to stop for 6weeks. Then started on.. Tamoxifen. The Predict scoring cannot differentiate between endocrine treatments, but I understand it's a really small % difference in risk. Nothing's guaranteed anyway. I'm happy I changed to the "old" drug Good Luck   ... View more

Hi Gerihattrick Guess that's how you feel rather than your real name? Hang in there. Further to my post below,  I did stop the evil pill  (Anastrozole) in March. Like you I felt I had a high pain threshold but it was just ridiculously bad. I couldn't stand up without my hubby helping. I couldn't even put washing out. Only 61 and poor sleep too. Managed 10 months on it. Felt like I'd been run over! Spoke with BCC nurse. Off everything for 6 weeks and I'd say the pains were just easing then I started Tamoxifen.  Didn't want to give up on endocrine treatment completely especially as I declined chemo. Been on T for 3 months now. Yes got flushes but not night sweats. The bone/joint pains have gone completely 😊 . Strength has returned to my hands.  I sleep better  (not like I did pre BC)  and my mood is defo better. Hope you improve.  Have an octopus hug 🐙 ... View more

Hi Evelyn I'm 60 and stopped Anastrazole last week on the advice of my BCN due to side effects. Been on it 9 months and after a lot of discussion, I'm going onto Tamoxifen. From what I understand it gives almost as much protection as AI and many other ladies have done the same. Especially if like me - my main s/e has been tendon/joint pains. Will start in April and hoping things ease off soon. It's all a bit of a lottery and I feel this is the right decision for me .. still have some protection from recurrence but want to enjoy life again without feeling crippled and ancient! Good Luck ... View more

Hello I have today discussed my medication with my BCN. After 9 months on anastrozole, I've decided to stop. I was a lot better on branded Arimidex, but still suffering too much on the evil pill. However I scored 8/8 Oestrogen and have declined chemo (Stage II 4/7 nodes +ve) and so did not want to leave myself completely exposed. So I'm going to start Tamoxifen ...after a 3 week break. Will give it a good go, as I plan to be on endocrine treatment for 5 years, then I'm leaving myself to fate. I understand joint pain should go and know there is some extra risk of uterine ca and DVT. I can also return to Arimidex later, if I feel stronger Just letting you know. It doesn't have to be all or nothing. Yes, I have questioned everything and am aware this is just my personal decision. All the best ... View more

Thank you Andi. Good luck to you too ... View more

Thanks for replying Andi  Can I ask how old you are and when did you have your surgery and R/T? Do you know why letrozole and not anastrozole was given? ... View more

Hello Kiki Your story sounds much like me. I was diagnosed Jan 18 (lump found 19 Dec 17), Stage 2 4 nodes. Had my 60th birthday then I had 15 R/t sessions and refused chemo. All happy until Anastrazole.. the evil pill I call it. I did change from generic type to Arimidex about 2 months ago. It is slightly kinder, but BC nurse has suggested changing to Tamoxifen. I really don't know what to do, so glad to see your post. Im wondering how things havee gone for you recently? Have s/e settled at all? Please let me know the honest outcome. Keep smiling! Good luck with it all ... View more

Gaum I'm now 4 weeks on from radiotherapy after a lumpectomy then further surgery for node removal from my armpit. I agree r/t was a bit underwhelming. I kept waiting for the scary things to kick in. I only had one day of fatigue and that was a warm day after a bad night's sleep and probably dehydrated. 30 mins nap soon sorted me out.  The itching (take 1 a day hayfever tablet - brilliant), the warmth - not uncomfortable (aloe vera gel). I did moisturise, but no real deal. Skin and boob are fine now with really slightly darker skin on the treated area, which only I see. I also quite enjoyed the r/t  and drove myself to/from (60 mile round trip). Friends came a couple of times for company. I felt I was in charge for once and doing something positive. The most likely place for any cancer cells to remain is in the breast/armpit where they carefully aim the rays. You feel nothing.   My only side effect is a weak shoulder from holding the awkward position for the 15 mins or so. Keep doing the exercises right through. Hope this helps. Nothing comes with a guarantee of course Good luck     ... View more

So, 1 week since I finished my 15 sessions of r/t. No signs of anything for the first 8 sessions then gradual reddening and then started applying aloe vera straight after. E45 cream at night. Some shoulder pain, take painkillers within the hour before each session. NB:Keep doing shoulder exercises all the way through and after. Since I finished there has been a gradual reddening, itching and heating up. Lots of small freckles/skin tags turning darker, but no big deal.   Last night it was like heat rash spreading fast and really itchy tiny lumps. Applied liberal Aloe Vera (Holland & Barrett) last thing. Lot of the rash and the heat had gone this morning. Made a big difference to the feel and look of my skin today. Hope that's my drama done! Zoledronic acid awaits   2nd tip - don't forget your back. My treatment meant some rays pass right through and hubby pointed it out.   Good luck ladies ... View more

LilacMoon I've done 13, just 2 to go. Have to tell you that once I got used to taking pain relief (my shoulders ached through holding the position especially first sessions) it has been a breeze. Even the heat/tenderness in my nipple didn't last more than 1 day (12th). I've driven myself for most of the sessions (60 milke round trip) and been busy, but not overloaded afterwards. Drink lots of water.. just add 2-3 glasses through the day as you remember it. The only day I felt fatigue was after a bad night's sticky sweaty sleep (weather) and not drunk much. Slight reddening and some colouring, really little impact so far. Once you get into the routine it's soon over.  ... View more

Thank you for this. Good luck with your own bits ! X ... View more