Breast Cancer Care Forum

Hi I've been on Letrozole for 7.5 months now(wow that's gone quick), I had nothing for 3 months and then just got an aching shoulder and an uncomfortable left hip which has nearly sorted itself out now. I have the odd hot flush but have not had anything that I have needed to take painkillers for. In fact I barely register my achy hip now, so don't worry side effects if any can be very mild and don't intefere with daily life. Joemic x 😊 ... View more

Hi Jennie I am one of those and to be fair I was a bit surprised. I finished chemo last Aug and was told my immune system would be ok in 3 months - here I am 7 months later with a letter. My letter came from my G.P on behalf of the NHS, it might be worth checking with them what their advice to you is. The letter basically says the NHS has identified you as someone at risk of severe illness if you catch covid-19. It recommends you stay at home for 12 weeks. What you need to do if you get symptoms and other general advice. Hope this helps Joemic x 😊 ... View more

Hi I wouldn't worry, if your work sent you home they obviously think you are high risk. I think the amount of chest infections you get puts you in that bracket. If you are isolating then you cannot be penalised for it. Hope that helps a bit. Stay safe Joemic x 😊 ... View more

Hi They look a bit like an electric toothbrush but have a water chamber attached. They come with different attachments and you put it near your gum line and between your teeth and it shoots water to get rid of any food debris that brushing misses; you can also put mouthwash in it. If you look up water flosses there are many brands which are much cheaper than waterpik. All I can say is it's working for me. Joemic x 😊 ... View more

Hi Jane I finished chemo in Aug last year and developed deep ridges and my nails started lifting on a couple of fingers. I kept my nails short (to stop them getting snagged and lifting more) and massaged oil into them twice a day. My nail beds have fully recovered but I still have ridges although not quite as deep. My 2 big toe nails were the same, although they didn't fully lift, they are still a bit of a mess because they take much longer to grow so can't cut the dead bits off very often. Hope this helps a bit and hope yours recover quick. Joemic x 😊 ... View more

I've been on Letrozole for nearly 6 months now, I had the Teva brand first and had no side effects, Accord brand for my second pack and again no problems; I've had the Sun brand for the last 4 months and a week or so of starting that one I started getting a painful hip and shoulder which I still have BUT whether it is related to the Sun brand I don't really know (it could just as easily be related to my bisphosphonates) and I won't know until I end up with yet another brand from the pharmacy. I think it's pot luck what brand you get from my pharmacy but I haven't enough evidence yet to ask my GP to state any particular brand. I hope you find a suitable brand Joemic x ... View more

Same here Anniej and I bet we're not the only ones 😬 . Wonder how many ladies are grabbing a mirror themselves 🤔 . Nothing wrong with it and it would be useful if people felt comfortable enough to say, it might help others realise we're finding the same side effects, just another thing we have to put up with and get used to.   Joemic x 😊 ... View more

👍🏻 Jaybro, so it isn't just me then, mind you I'm not entirely sure when they decided to do a vanishing act 🤔 , I think the last time they were there was when my pubes were growing back🧐. I'm just wondering what else is going to disappear into the ether 😳 . I could do with some shrinkage from my bottom and belly but no doubt that won't happen 😂 .   Don't know what planet I've been on but had to google the Gwyneth Paltrow bit - can't say I've noticed any changes to the way I smell (although the outside gets itchy when washing and stops as soon as I've done) but I think I'd really worry if I started smelling of bergamont and citrus 😬 .   I guess we'll have to wait and see if anyone else has been affected and if they grew back...or not 😳   Joemic x 😊 ... View more

Hi Jaybro   Darned frustrating trying to work out what side effect is from what meds🧐. I had the infusions when I was having chemo but was changed to the tabs once chemo was completed. I didn't suffer any painful side effects when on the infusion but have noticed that I have a terrible ache, not quite painful but certainly very uncomfortable, down my left shin, a painful left hip and right shoulder 🙄 . Spoke to the bcn when I had my appt but she dismissively said 'yeah that'll be the letrozole' but then followed it by saying 'we see you next in 2 years when you stop the chuffing horrendous bisphosphonate 😳 ', not filled with positivity after that but she wouldn't elaborate any further after that, just kept saying we'll see you in 2 years, the onus is now on you to check for recurrences and phone us if you notice any differences 😬 I guess your pain maybe due to the infusions, did you notice whether the pain is worse after the infusion but then starts to taper off the longer between infusions you go? If it does you may have a link between the 2. Sorry I can not be of any more help, but I am also intrigued as to others experiences and hope things settle down for you. Joemic x 😊 ... View more

Hi I've not since returned to work following active treatment so maybe some of what I have found may help you. I had 2 surgeries, 6 rounds of chemo and 15 rads. I finished on 4th Oct, I gave it a further 2 weeks for any skin reaction to reach its peak and a further 2 weeks to recover and returned to work on a phased return on 4th nov. I did q day the first week, 2 days the next then 3, then 4 and finally back to full time hours on the 5th week. I suffered very little fatigue during my treatment but oh boy I hit it big time upon return to work, it was a godsend that I had a phased return. My job is very similar to yours and believe me it is so difficult initially, you're trying to return, catch up with what you've missed, still keeping up with the kids not to mention other things like cooking, washing etc. I had a bit of chemo brain going on too, very frustrating especially when you have a job which relies on your memory so much. Colleagues reactions can also be wearing, not that they intend to be but hey your heads a mush.   What I'm saying is it is an incredibly taxing time when you return even if you (like me) are so looking forward to it. Because I had been off so long I had accrued all my yearly leave allowance so have not yet, apart from once, worked a full week. The one full week I did was not successful - although I fulfilled the hours, the fatigue and subsequent meltdown was not so good. I still won't be doing a full week until after the Easter holidays due to bank holidays and rest of my leave. I am shattered at the end of my day and thats 8 hours, I honestly couldn't do 12 after 8 hours my judgement starts to falter and I get too tired to think straight, you will need to think seriously how many hours you can cope with in a day as you need to be on the ball. Being at work is different to being at home, you don't realise how much easier it is to pace yourself at home (even with kids) than it is at work until you do it. If I were to do it again, I'd have taken a bit longer off before returning - you're very soon back into the role and people soon forget what you were off with. If you can afford to take as long as you can, your body and mind will thank you for it. I'm thinking about dropping a day but am going to give it a bit longer before making that decision. In my opinion 12 hr days are a no no for quite a while. Sorry for waffling and hope you find a suitable solution for yourself, occie health should support you with this. Joemic x p.s I am still enjoying being back at work 😊 ... View more

Hi Sunflower I doubt very much that they would be wanting to force you back to work before you are ready. I work in the public sector and part of the managing attendance process if we are off work for more than four weeks we are referred to occupational health. I was in regular contact with my occupational health throughout my time off for surgery, chemo and rads. They were there to support me and at no time pushed me to return. When I was ready to return after 9 months, they were the ones who insisted I had a phased return and monitored how I was coping with it. One of their main roles is to support people back to work when they are ready (not force it) as at the end of the day they want people back to work not push them so they are off again. It's natural to be worried about something we have not had to face before and to be fair I do think referals to occie health have been used as a threat against workers which is a real shame as I found them very supportive as have many other people I know and hand on heart I can't say there is anyone I know of in my organisation who have had a negative experience with them. Try going in with a couple of questions i.e. ask them how they will help you return to work when you are ready, ask them what the procedure is you need to follow and if you feel able ask them if the meeting has been organised to force you back to work before you're ready, at least you'd know then.  Above all else remember you are a tough cookie to have gone through everything you have so try not to worry about the meeting. Joemic x 😊 ... View more

Hi Thurnefi I'm pleased you found my post useful, it makes it worthwhile posting stuff when you know it helps somebody else 😊 I do hope your appointment went well and dare I say it, had all the help you needed and a plan for future support. It is a relief when the intervals between down days get longer, it psychologically helps you get on with life and actually think about planning for the future, even if it is a month or two in advance, it's way more than I felt able to do before 👍🏻 . I have no doubt that you will get there but take your time and don't try and force it or you'll end up doing the 1 step forward and 2 back. BC definitely messes with your head that's for sure 😬 . Joemic x ... View more

Hi Ladies Just thought I'd update you following my appointment with the breast care nurse.   There was no check up or breast exam - she did chase up my mamo as I am over a year post first surgery, she was a little surprised that I had had no appointment letter yet.   She basically recapped on my diagnosis, treatment and continuing meds - I sat patiently and listened although to be fair I could have told her about it because like many of you ladies I know it verbatum. I was a bit surprised that she told me rather than asking me to explain to her, so she could have checked my understanding and corrected or explained throughout as required. She did mention the moving forward course I could attend if I wanted to.   In a nutshell, apart from a yearly mamo there are no further appointments until 2022 when my Bisphosphonates are due to be discontinued and then 2024 at the 5 year mark. There are no breast checks - she said they leave it up to the patient to contact them if they think they feel anything has changed, feel a lump etc or have a question.   She did give me copies of my Oncology letters which I had asked for but not received (she seemed surprised that I had not received any oncology letters), apart from the last one from nov which apparently hasn't been put on the system yet!!!!!.   So that's it for me not quite sure how I feel about no contact until 2022, I think I find it kind of strange when so many others seem to have regular followups for 5 years but on the other hand feel happy to get on with my life - or at least try to, its still up and down at the minute but the down is slowly getting longer in between.   Joemic x    Joemic x  ... View more

Hi MoDo I'm sorry to read you are suffering anxiety and flashbacks, this is such a horrible time for you but can I try and at least offer you some positives. I had bisphosphonate infusions before being put on tablet form once my chemo had finished (my bisphosphonate was Zometa). I had NO side effects, I know some who had backache (but very doable) and a couple who had flu like symptoms that lasted a couple of days and occured after their 1st cycle only. I don't know anyone who suffered horrendous side effects, so the chances are you are suffering more from what you think might happen rather from any side effects, if any, you do get. I hope everything goes well and try not to worry (I know it's easier said than done). Sending hugs and positive vibes. Joemic x 😊 ... View more

Hi ladies Up and down emotions seem to be an integral part of bc but try not to be so hard on yourselves, immediately upon diagnosis we're hit with a sledgehammer, definitely blindsided and frantically trying to make sense of 'why me', there is no wonder we have meltdowns and have many dark moments. Those of us with kids worry ourselves sick on what will happen to them, how will we cope throughout treatment and more to the point how will we minimise distress for them. Those with husbands/partners/parents worry about them, not to mention finances, jobs etc - my point is ladies with all those things to worry about there is no wonder we have meltdowns and dark moments as we're trying to cope with bc, treatments and effects.  Never feel guilty about having these thoughts and don't beat yourself up, our minds have to come to terms with our diagnosis and it's bound to have a bumpy ride - there's a lot to process and come to terms with. Jaybros' nurses words are very wise, the thing that has helped me through is to come to terms with the fact that if recurrence happens it happens, I can do everything I possibly can to reduce recurrence risks but despite that it still may or may not return, there are no guarantees no matter what treatments we have. We can either spend the next years worrying and let it blight our lives or think what the heck if it does it does but get on and enjoy life.  I have chosen the latter but that's not to say I don't have the odd meltdown, I'm human after all. In fact around Christmas time I hit rock bottom but looking back, that is what I needed as since then I have managed to finally come to terms with my diagnosis and treatments which has in turn changed my mindset to becoming more positive, it's been hard but is getting better and it is no longer consuming my every thought, I fully expect to have the occasional meltdown but it's all part of the healing process. I am a year post diagnosis and getting on with my life. For the first 10 months it was very hard but the time span between meltdowns has greatly improved. Initially ladies it is a dark, confusing time but take heart you will learn effective coping mechanisms but allow yourself time to come to terms with whats happened to you, once you have then you can start to heal. I think it is very much like the grieving process and you have to go through each stage. Keep going ladies and getting support from ladies on here. I wish you the very best throughout your treatment and the years beyond.   Joemic x ... View more

Hi scared75 You're emotions are absolutely normal, it is very much a 🎢 rolercoaster of a journey you are embarking on. Waiting for results particularly are hard, one minute you're up and the next in the depths of despair. Things will settle down a bit once you have all your test results but these can take a while, unfortunately they are all needed in order to make a clear treatment plan - sometimes results can change after biopsies and then surgery. Try not to google (easier said than done), there's a lot of false information out there but if you do need to look, make sure you stick to reputable sites such as this and macmillan. People on here will give you support, just ask - there are so many of us who have trod the same path as you so really understand how it messes with your head and we are still here, so please reach out, don't suffer in silence. Sending lots of hugs   Joemic x 😊 ... View more

Thanks Jaybro I've no idea who my original breast nurse is, I thought I did but saw 3 different ones 🙄 . Agree about the oncologists, mine never really gave any info apart from to sign me up for chemo, then for literally 3 mins to review at 5th out of 6 cycles, the chemo nurse who did the other reviews was so evasive and didn't answer any questions- she said she would ask the onc but never got back to me.  The radiologist nurse didn't fill me with faith, she wouldn't even tell me the stage - said they didn't do that. At that review she checked my skin said everything was ok and referred me back to breast nurses, I requested a copy of the letter they were sending to G.P and I'm still waiting 2 months later. I'm getting annoyed now, I've asked questions about my diagnosis but haven't recieved any info since surgery surgeon. Onco nurse said they don't send copies to patients as they get upset. I'm totally different to you in that I needed to know - I cope much better knowing, even if it isn't good news. What I'm not good with is not knowing and now I think they're hiding something from me - even if they're not I now think they are because they've evaded my questions and not sent copy of requested letter. I guess I'll see what the breast care nurse says - if I'm fobbed off again, I'll go to PALS, I need to know so I can properly move on despite what the results may be.   Joemic x  ... View more