Breast Cancer Now Forum

Oh NikNak, poor you! I hope that goes soon. I can’t add much as, tbh I still haven’t had my DEXA scan results through … which I should chase … ... View more

Hello Giselle, good to hear from you but sorry to hear the news about your hubby. More worry eh? Hopefully it won’t be too long before things are clearer. I have started the year determined not to worry about stuff too much, but of course that is easier said than done. However, trying is a step in the correct direction. Bristol eh? I haven’t been there for years but from what I recall it’s a lovely city, the bridge is great to visit and they have white tigers in the zoo.  I have spoken to the surgery about my DEXA scan but they haven’t had the results yet. I really must phone the hospital and make some enquiries. Job for next week. I haven’t had much in the way of problems with the Letrozole apart from very intense flushes but frankly, I am scared not to take it as I know it’s helping to stop the cancer coming back. Since the New Year, I have felt much more like my old self with better energy levels although this will be tested in a couple of weeks when the grandkids are due to visit for three nights. We are taking them to Go Ape but will have a full day out the day before as well, and when we are all indoors they like Nan playing with them. The eldest is 13 so I am hoping they are past the game of “schools”. We have football the day they go home so it remains to be seen if yours truly then has to spend the whole of the Sunday asleep! The first signs of spring are in the air and snowdrops are peeping through. I love this time of the year with all the promise of spring and summer to come. There’s no doubt that my “cancer experience “ has changed me, and in many ways for the better I believe. I have always been a terrible wimp and reluctant to say boo to even a small goose but I somehow feel a lot tougher than I did and less inclined to back down in situations I would have shied away from in the past.  Sending hugs from here, have a good time away! Love Kate xx ... View more

Morning Giselle, sorry must have missed your message before this one. A new grandson, that’s lovely! Congratulations xx I am a step grandmother courtesy of my hubby, having had no kids myself and it’s interesting and enjoyable watching them grow up and change.  Things are fine here, on the whole. My ops appear to have healed well and I just get the odd twinge or ache now but nothing much. My energy levels have started to improve, but at 61 I recognise that getting older also adds to aches and pains so I do what I can do and rest when I need to. I had my DEXA scan in October but still don’t have the results which will apparently be sent to my GP and then I will get called in to see him. That will be an “interesting” appointment as I have decided against taking the Zolondronic acid and he can be a bit of a bully so that won’t go down well if he thinks I am wrong! The oncologist was a bit taken aback, but having suffered badly with GERD and laryngospasms in the past (linked to my anxiety problems) I am reluctant to take anything that might upset my poor old tummy again. I am doing okay on the Letrozole, albeit it gives me wicked hot flushes, but I figure they are a small price to pay to hopefully keep the cancer at bay.  So, I am living my life, driving my TT around the Lincolnshire countryside and going for beach walks as often as I can. Cancer has taught me that life is finite and I am determined to find the positive and enjoy every day as much as I can. As a high functioning autistic, I am lucky that I am happiest when I have normality and routine, spending time with my cat and caring for my tropical fish. We live in a beautiful area so I have all I need here, really, and hubby has his hobbies too so we just toddle about quietly in and around home.  It is good to hear from you, so please do message in future and we can have a catch up. I think my next mammogram will be in March and then I will be called to see my surgeon again. But that’s for then. Good luck with the calcichew, if grumpy GP says I need something stronger than Tesco calcium, I might ask for that. Art is great - I make dioramas which are sort of in the same ballpark and are a good workout for the grey matter. Enjoy!  All the very best, happy 2023 … Kate xx ... View more

Gosh RonWhite, that sounds awful! So sorry to hear this has happened to you and I only hope that like Teddy, over time things might improve. It’s all very well saying that one’s chances of a bad reaction is rare, not so when that rarity turns out to be you. I remain firm in my resolve to say no to this drug, it’s not for me. Look after yourself, sending a hug from here xx ... View more

Hello Teddy, no result on the scan yet. But glad to hear you are recovering and able to enjoy life again. I will update on here when I do get the result.  ... View more

Good afternoon Teddy, I went for my DEXA scan today and it’s prompted me to ask you how you are feeling now? Have you fully recovered from your bad reaction to this drug or are you still feeling poorly? I have not changed my mind about refusing it; my GP is a grumpy man at best and won’t react well to this if he thinks I am wrong but so be it. Hope you are doing better, anyway xx ... View more

Update. I spoke with my oncologist yesterday and told him that I was uncomfortable with the idea of taking these drugs. He was a little surprised but said that, given my cancer had been caught early with just a minuscule spread to one lymph node, he was happy that not taking them wouldn’t unduly increase my risk of return. We have now agreed a way forward. I await a DEXA scan and then will see my GP to discuss the results. Possibly I may be prescribed a high Calcium supplement to take or, if bones are not good, revisit the option of taking this drug (his words). I have no argument with any of that, as the “need” v “desirable” considerations still apply. So, there we are. I will update this thread idc (probably in the New Year) with what happens next in case my journey helps someone else on this path. Love to all x ... View more

Well, I have been very much “on the fence” about this drug but I think your experience Teddy271 has finally decided me. I am going to refuse the offer of bisphosphonates and take my chances. Given the Letrozole and risk of osteoporosis, this might turn out to be the wrong thing to do and if it is, it is. I am a great believer in “gut feelings” and “intuition” and a little voice inside me has to date, been telling me to refuse them. I have been very lucky so far - my cancer was caught early and I have healed well, albeit I am still experiencing tiredness from the radiotherapy. But other than that, I am good. I am 61 and want, if possible, ten more years of good quality life with the ability and energy to do what I enjoy. I will try as best I can to look after myself; eat well, exercise, sleep well. I will probably sell my bike - don’t want to fall off it - and I am not one for anything more strenuous than walking anyway. My follow up consult with the oncologist is next Thursday so I have until then to consider how to (nicely) phrase my refusal. Maybe he will prescribe some high dosage calcium tablets instead? You have my very best wishes Teddy and I very much hope that this awful reaction wears off and you are able to resume your life. And thank you again for sharing your experiences on here. Xx ... View more

My interest in this thread continues as I am having my follow up appointment with the oncologist on Thursday (indeed, tomorrow!). I am still undecided, although think I will request a DEXA scan if one isn’t offered so at least my current bone health will be revealed. Since last posting, I have seen my own dentist and sought his views (quite positive). I am also taking supermarket bought calcium and vitamin D supplements; whether they do much at all I have no idea but better than nothing I suppose. Other than that, I seem to be progressing well in the overall recovery stakes and feeling much more like my old self, although the post radiotherapy fatigue can still strike without warning. Washed my car this morning, started to polish her (yes, not something I usually do but this is my lovely Audi TT bought following diagnosis) and then it hit me like a wall - felt weak and a bit sick so stopped to eat and resting now. Who knew applying a bit of polish was so tiring?  ... View more

Hello Max26, I think you have to do what feels right to you, whilst taking care not to overdo it and put strain on your body whilst it’s trying to repair itself. I coped well with the radiotherapy but was tired afterwards and even now don’t feel I have all my energy back. I am nearly 61 though. And presumably you enjoy your job? I had a hysterectomy in 2003 and “spun” my sick leave out for four months, simply because as a civil servant I was on full pay and knew I could. I then went back on recuperative duties and actually, shortly after that, I left! I did feel a bit naughty at the time (I was enjoying being off) but looking back, I suspect that taking that extra time did me good physically and meant that I healed really well with no after effects.  I know what you mean about not feeling you have cancer, me too. Apart from the soreness after the op etc, I haven’t felt ill at all. And I don’t look ill. But, that doesn’t mean you are not ill, of course, nor that your body doesn’t need that time to repair. Just don’t overdo it and of course, be kind to yourself xx ... View more

Evening Giselle, how nice to hear from you. Things are good here, the Letrozole doesn’t appear to give me any side effects except some major hot flushes from time to time. I have had them for years anyway so no big deal. Boob has healed amazingly well and really is not much smaller than the other one, but I can still “feel” the tightness underneath where the flap was taken up and I do get the odd bit of pain. However in relative terms it’s still early days. My energy is slowly returning although I am careful not to overdo it too much. We have a pretty quiet life anyway so that’s not too hard.  I have yet to have the follow up appointment with my oncologist and must chase it up this week if I don’t hear. I have a dental checkup this week and plan to ask him what he thinks about the bisphosphonates as I am still on the fence. I would certainly want a DEXA scan first. I bought some Calcium with Vitamin D and have been taking them for the last three weeks or so, and I take a daily magnesium anyway. Have you had any side effects from it yet? I am worried about making my silent reflux worse.  So on the whole, pretty good. Funnily enough, thoughts of cancer have receded in my brain although come check up time, I am sure they will return. In a way, the whole episode still feels a bit like it happened to someone else and I am sure that this is because, apart from pain after the op, I have never felt unwell.  Lots of love and hugs back at you, this forum has been amazing in so many ways. Look after yourself xxx Kate   ... View more

Hello Saraha59, I am a similar age to you - 60 in October last year, diagnosed in April, now through ops and radiotherapy and on Letrozole. My opinion is that it depends how you regard the working part of your life? For some, it is bound up in their identity, and in addition, some love their jobs. I have a friend, same age, who loves to work and enjoys the social interaction and the banter. I always worked to live and my life was outside of work. I have a lot of hobbies and interests. I don’t need much social interaction and in fact, enjoy time on my own and with my cat. I haven’t worked at all for 6 years and gave up my full time job nearly 20 years ago. I remember walking away from that office job with a light heart and gratitude that I had finally escaped - no more meetings, no more staff management, no more dressing up in work clothes, no more sitting at a desk wishing I was somewhere else. I never missed it for one minute and struggle to recall how it felt to be there, yet it was my daily life for 23 years. Now, finally, I enjoy receiving my work pension, albeit small.  That is me and how I feel. I hope others now add to this thread. Good luck with whatever you decide, all the best Kate x ... View more

Hello bdsc, how kind of you to reply. My boob is a lot better now, finished my radiotherapy  just under a month ago and it all went well. I hope you find the same. My advice, for what it’s worth - drink plenty of water and moisturise area and I mean, slap it on in handfuls. I have got through two tubs of E45 and a tube of the stuff, but I think it’s done the trick.  Good luck xxx ... View more

Interesting post magsmclean, yes I am a HFA although never formally diagnosed. Obviously, like our neurotypical friends and family, we are not “one size fits all”, but I do identify with parts of what you say. And agree that male and female aspies are very different. The “responding appropriately for others” - I totally get that; without going off on too much of a tangent, I find myself just acting to fit in most of the time and the older I get, the harder I am finding it to do. So tiring and you find yourself watching what you say virtually all the time. Hence I often prefer to do stuff on my own. Regarding your feelings of rage, here we are different although to qualify that, both my parents are dead and I have no kids. I think if parents were still here, I would feel overwhelming sorrow for them and probably some illogical guilt as well. I never wanted kids anyway, never wanted the responsibility of it. And I know I am quite selfish in many ways. What has surprised me is that although I have had a couple of “bleak days”, on the whole, I haven’t felt too bad, mentally. Maybe because I am on SSRIs? Maybe because I am logical? I have no idea. Given I have OCD, the cancer has actually kept my brain occupied and off the “rubbish stuff” I am usually troubled with.  So, I can’t be much help but perhaps if you speak to your breast care nurse, you can access some counselling which would give you a safe space to vent without upsetting your family/friends? It’s a thought, anyway. Look after yourself, and don’t beat yourself up. You are who you are and, if you are like me, it feels like you have been dumped on Mars with alien creatures half the time. And the treatment is wonderful now so even if not caught early, there will be answers. Love and hugs, Kate ... View more

Morning Giselle, so pleased to hear your op is over and recovery going well. News from here: radiotherapy done, it wasn’t too bad despite happening during that really hot few days (we hold the record for the highest UK temperature now in Lincolnshire). I really looked after my boob though and will continue to do so in terms of slapping on the cream and protecting it from the sun. Back to driving normally and fishing, albeit I find I do tire more easily at present, although that might be the weather as well.  Started the Letrozole just under a month ago and am now taking it at night. So far, so good, perhaps my (fading) hot flushes have started up again and I have felt a bit twitchy from time to time. I got Accord brand and they appear to be okay so doctors have noted on the computer to always get these for me.  Waiting for oncologist appointment to discuss the bisphosphonates - do you take a tablet daily? I am still unsure what to do for the best? So that’s on the back burner until I can speak to him, and I am just getting on with my life. Always good to hear from you, take care of yourself, love and hugs Kate xxx ... View more

Thanks Jaybro, very interesting post and more food for thought. I appreciate the time and trouble you have taken over it. My appointment with oncologist isn’t for another 4-6 weeks, and I will discuss the whole issue with him very thoroughly. Take care xx ... View more

Hello Oldgirl, I have yet to get my follow up appointment with the oncologist but, unless he provides me with a very convincing argument, I think I am going to say no. I appear to be tolerating the Letrozole well and am making a good recovery from the radiotherapy. I hope when I speak with him we can look at the NHS Predict together to gauge what percentage of difference it will make. In my case, I am rising 61 with no kids and expect that difference to be a couple of percent or so over the next five years. I think quality over quantity for me. On the upside, I have started with supplements- calcium, Vit d and magnesium. Won’t be as good but might help. Anyway I will report back after oncologist and I have spoken. Look after yourself x ... View more

Hello Oldgirl, yep I have doubts as well. Just finished my radiotherapy and started Letrozole but I know oncologist is keen for me to start the bisphosphonates as well. I am not sure, to be honest, although posts on this thread do make encouraging reading. I am intending to fully discuss the meds first but on balance, think if I do say yes. I will ask for the infusions rather than the tablets which sound complex and can interfere with your oesophagus if you are not careful. I have enough problem with reflux already. Honestly, it’s a minefield isn’t it?  ... View more

Hello Ruth V, interesting post. I have only just started Letrozole and have been given Accord and, having read through various posts on here, it SEEMS to be the one that gives most folk the least side effects. It is often hotly denied in medical circles but in my opinion is a fact that the “carrier” ingredients in a medication can really alter how you respond to it. I am intending to ask my GP practice to specify Accord on my prescription so I don’t have to try anything else. Someone else might come along shortly with info on the other brand you mention.  ... View more