Breast Cancer Now Forum

Hi KitKat, I would absolutely back up everything you have said. I was reluctant as you know because as of potential side effects, but as yet ( fingers crossed) , I have have only had mild flushes. I too don’t want to be back in that chair in 5 yrs time wishing that I had taken the tablets. Neither of the choices - to take the tablets or not to take the tablets , are the choices  we want , neither come without consequences but they are what they are, sadly . PJRL just be sure to have  ALL the facts st your fingertips before you make your decision - good luck ❤️ ... View more

Hi tappin, the Nottingham score I was talking about is the Nottingham Prognostic Index. It is an algorithm that predicts prognosis and therefore the treatment recommended to combat your cancer. It takes 3 things into consideration, tumour size, grade of cancer ( ie how aggressive it is), and lymph node involvement or not. Your BCN should be able to give you your score if you ask her. You can Google Nottingham Prognostic Index , there is information on how to use it if you want to. I’m not sure whether it includes DCIS in its parameters or whether it is just used in IDC . I suspect the latter.  As for follow up. I think every centre has its own protocols. After surgery I was handed into the care of the radiotherapists. 6 weeks after radiotherapy finished I received a follow up phone call from that consultant to check that all was good, I was then handed back to the care of the breast team in my area. There are no plans for any follow up appointments with that team ( so no follow up call in my area), but I have my BCN telephone number and have open access to that any time I want.  I will have yearly mammograms for five years and another bone scan in two years along with 5 yrs Letrozole. I have to say that although my BCN is very polite , she has not been exactly forthcoming with information. The information she has volunteered has been basic and replicated in information booklets. Anything over and above that information I have had to ask for, sometimes several times, leaving me feeling frustrated and a nuisance. I know that we are all different and some people have no wish to know the details, and my BCN has to cater for those people too, but a ‘ would you’ll like to know’ question would be good along with a surrendering of said information ( it shouldn’t have to be a struggle especially at a time when you feel emotional and vulnerable). So basically, no nursing or clinical information freely proffered in my case , which makes me think that my BCN is really a very well qualified administrator whose nursing skills could be better used. Perhaps a system overhaul is due ? Personally, if I know what I am dealing with I can cope with it much better. So I feel that I am my own best advocate and in order to be that I have researched extensively to put my mind at rest. Not everyone’s route but definitely mine.  I WAS offered a ‘moving on’ course , but have politely declined , that’s not the information I was seeking.  Having said all the above , whether or not I had the information I wanted, would not have altered my treatment course, that would have remained exactly as it is. What would have altered would have been my mindset, which is very very important. However, it is as it is. So now I have put it all in a box, it’s on a shelf in the back of my mind if I want it , but knowing me it’ll stay there till it becomes dust and blows away.   good luck with your follow up in April , have your questions ready before the call and make sure you get answers that satisfy you.   take care, best ❤️ ❤️   ... View more

Good morning, I’m so happy that positive stories are helping. My own update is that I’m now 16 weeks in and still no side effects from letrozole. The hot flushes are diminishing ,  I have found that drinking coffee will spark one but that was the same when I was going through the menopause 20 yrs ago, and that is a well known trigger factor. I do take my letrozole at exactly the same time every day , I don’t know if that helps but it means that the levels of it remain pretty constant, no troughs or spikes.  Last time I posted I was a week or two post radiotherapy and feeling exhausted and with pain. I am pleased to report that I no longer feel like that so the effects have been transient. I now have more energy and feel more alert than I have felt for a very long time. So…. If you’re going through post radiotherapy fatigue or are wondering how it will affect you, it will get better.  My breast is still healing inside, I had a 9.9 cm lump removed weighing a whopping 10.7 oz , so it will take a little time to be completely without soreness but it will happen. In the meantime I have full use of my arm with a full range of movement and no pain , back to normal really.  I notice that there is sometimes a question about which drug to use, either tamoxifen or an aromatise inhibitor like letrozole so ……. Oestrogen + cancer means that the cancer is fuelled by  oestrogen, it needs oestrogen to be able to grow and multiply, so if you can stop oestrogen from getting to the cancer cell it with starve to death. JaneRu you should be able to find your score on your report, if not then your breast care nurse should be able to tell you. The higher out of 8 the score is then the more responsive it is to oestrogen and the more treatable it will be by reducing its access to oestrogen.  Tamoxifen and letrozole have different mechanisms for reducing that access. Tamoxifen acts directly on the cancer cells by blocking their receptors, a bit like stitching their mouths shut. Letrozole works by reducing the amount of oestrogen you have circulating in your body, thus starving the cancer cells that way. If you are pre menopausal you don’t really want to lower your oestrogen levels as oestrogen is useful for other things too, so tamoxifen is the drug of choice as it starves the cancer cells without reducing oestrogen levels. If you are post menopausal the letrozole is the drug of choice. Oestrogen levels are  lower then in any case so lowering them further and starving the cancer cells that way is very effective.  in my case I was initially very reluctant to take them but given my circumstances I felt I had no choice. I’m glad I did start them now.  I had a multi focal breast cancer, two invasive tumours in the same quadrant of the same breast, originating from the same source. One was just behind my nipple, the other near my chest wall, they were both 8/8 oestrogen and progesterone positive , both had lymphovascular invasion , meaning that both had invaded nearby tissue, blood vessels and lymph vessels ( my sentinel nodes were clear). Both were just under 2cms. They were 6.5cms apart and that space in between was filled with in situ carcinoma, the total size being 9.9cms. I was very lucky that my surgeon was an oncoplastic surgeon so she was able to do a huge lumpectomy and still leave me with a decent breast that doesn’t need any further reconstruction. ( she’s fantastic).  My breast cancer was scored ( as is the norm), on the Nottingham scale. At the moment if you have multi focal Breast cancer it only takes into account the size of the largest tumour and not the size of the sum of all the tumours. There is ongoing debate about this as some research indicates that the accumulated size should be considered. That would certainly have put me into a different category. Also there is research indicating that lymphovascular invasion should also be used as an independent predictor, which at the moment it isn’t. So my Nottingham score indicated that I shouldn’t be offered chemotherapy. On the one hand I was relieved on the other I was anxious that it wasn’t offered. I am an ex nurse and wanted it to be treated as aggressively as possible . So…. The reason I eventually decided to take letrozole was that I felt that if a stray cancer cell or two had moved out of my breast via my blood vessels , then I didn’t want it to set up shop anywhere else, so starving it of oestrogen with letrozole was my best option as I wasn’t offered chemo ( which I would have taken in a heartbeat).  oh yes. About the bone thing. Reducing oestrogen will have an effect on your bone density which is why we have an initial density scan before taking letrozole to get a base level. If any bone density levels are a bit lower than they should be ( and they often are after the menopause), then you should be offered treatment, advice and further monitoring scans later during your treatment. I am scheduled for two years hence.  Im sorry I seemed to have rambled a bit this morning, this is a long post but if it makes anything any clearer for any one then it’s been worth it. Please take care of yourselves and each other, big hugs to you all , ❤️ ❤️ ❤️ ❤️ ... 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Hi Aileana, I'm so sorry, you sound to be having a tough time of it. I’m now 9 weeks in ( still early days),  but letrozole side effects don’t seem to be getting any worse. I finished radiotherapy 10 days ago. I had the 5 day IMRT course. My skin is fantastic, jus a little pink and a little warm over nipple and scar area. I put diprobase cream on breast as soon as each RT session was finished then 3 or 4 times daily after that. Skin needs to be cream free before each session. The radiotherapist  told me that the cream has to go into the skin ( carefully), and not just sit on the skin. I was prepared for skin reaction , which didn’t happen, but not for deep breast and rib pain I started getting at about 1 week after treatment finished. It stopped me in my tracks and woke me in the night and paracetamol didn’t shift it. It’s temporary and it will go when the radiation has done it’s job but in the meantime it’s made me feel sick and exhausted a lot of the time. I’m very impatient and I want to get back to having some energy levels so I can get on with stuff but it seems we just have to ride this one out. I hate feeling tired and sick. However , it’s a small price to pay for the rest of my life so not complaining. Just putting it out there so that if the pain and exhaustion hits anyone else then at least you’ll know it’s not just you, it’s what can happen with radiotherapy. I have a follow up ( probably telephone), with radiotherapy team in a few weeks time then expect to be handed back to the care of the breast nurses in my town. Apart from yearly mammograms I don’t expect to see them again ever unless I have a problem, which I won’t have . I’ll keep you updated on letrozole journey. I was so reluctant to take it so fingers crossed it remains positive  and I can share that with you. take care all, have a good Christmas with your loved ones, big hugs ❤️ ❤️ ❤️ ... View more

Morning all, said I would keep you updated . Almost 7 weeks in now and still no side effects from letrozole apart from the odd hot flush (mostly after coffee or a meal).  Am so happy about it as I was dreading taking them. Still taking them at 5pm with a mouthful of food. Still early days but so far it seems to be suiting me. Just finished 4 of 5 radiotherapy sessions and so far that is good too, have been told that, as the radiotherapy is cumulative and continues to work for at least two weeks after the last session, I should expect to feel worse for two weeks and then start to improve. Skin is a little bit pink and a little bit warm but that is all so far. I hope you’re all as well as we can be whilst this is happening to us. Take care, speak soon and big hugs ( gingerly at the moment) ❤️ ❤️ ... View more

Hi kissane,  the discomfort you are feeling is due to the nerve endings in your skin recovering after the nerve was disturbed during surgery . It takes a couple of weeks for them to stop being super sensitive but they will usually then  settle down , in the meantime it feels like a burn. The numbness may be permanent but the skin sensitivity will go . Hope it’s soon for you. Take care ❤️ ❤️ ... View more

Hi Judy, Hope your aches and pains have resolved and the culprit isn’t letrozole . The road to recovery isn’t a straight one is it ?  Would be interested to know if you find anything interesting on the course and hope it helps  . Good luck ❤️ ... View more

Hi Sue ,  nearly 4 weeks in and just some hot flushes. Fingers crossed. Hope it’s still good for you too ❤️ ... View more

Hi Judy, thank you for your feedback, the more positive letrozole stories the better. You sound to have been taking letrozole just a little longer than me so we are doing this together. I am not usually a ‘ joiner in er ‘ , but am surprised at how much re-assurance I am getting from this feed, perhaps I should join a group after all.  You are absolutely right when you say it is a new life we are about to lead. It’s something I hadn’t appreciated before. I thought that I could blithely have the surgery , then radiotherapy then take the tablets and return to my old life. The slowly dawning realisation that this wasn’t exactly how it works was quite a shock. It seems that there is always going to be a new milestone, a new goal to achieve. What I thought that this was just a bump in the road to be driven past and forgotten, is turning into a series of roadworks stretching into the horizon and I need to accept it before I can move on. Having said that I am still one of the lucky ones so not complaining, just vocalising.  In the meantime , having recovered from the surgeries I feel fantastic and am eager to get back to my studio and my work, which I love. Frustrated at the delay in starting radiotherapy but… it will soon be done and will get back to my new normality. Please let us know how you continue to be on letrozole, it’s really helpful. Best wishes for your continued recovery, big hugs ❤️ ❤️ ❤️ ... View more

Hi Helzie,  thank you so much for your positive feed, it is very encouraging. Have been taking Letrozole for nearly 3 weeks now and although it’s very early days so far so good, just the occasional small flush after my evening meal. It was so good to hear your experience, have my fingers and toes crossed that it will be the same for me. Sending you all best wishes for a continued good health, hugs, ❤️ ... View more

Hi SMH1954 im glad you’ve got some information that you feel is helpful. Making these decisions is not easy so information is important. Good luck and good health with whatever you decide. Big hugs ❤️ ❤️ ... View more

Hi Sandpiper, Yes I did get my hair cut and coloured and it has helped a lot. We locked down very early because of other problems I have so hadn’t seen a hairdresser for two years. Getting this done has given me a huge boost, not only the way I look but also now ( because I’ve had my COVID booster and flu vacc),  I am getting out of the house into that fantastic big wide world out there. I had forgotten what that felt like!! My hair isn’t quite the colour I want yet as the hairdresser couldn’t get all of my natural colour out at once , but they will next time. I am drinking a good amount of water now so as well as doing me good my skin looks much younger too , so both my hair and my skin are making me look so much better which in turn makes me feel better and more lively.  As you say it’s not just the physical that matters. Despite my anxieties about a delayed start to radiotherapy , the upside of that is that it has given me a few weeks where I have no appointments and no doctor or nurse telephone calls . It has been full on since I found the lump in august but this respite has been glorious. I know I still have the radiotherapy to come ( and that’s not scary , just a reminder of the condition), but this few weeks is a reminder of what life will be like when the high intensity care is done and I can get back to ordinary life.  We have started planning again, we have found a campsite in France with log cabins for rent and which accepts a dog as part of the package, can’t tell you how much that has lifted my spirits. The thought of the freedom of the open road with my best beloved and our dog, the sunshine, fresh baguettes , the sights and the smells, having that to look forward to …  well I feel fit to burst, I’m very happy.   Once the expected radiotherapy fatigue has resolved I plan to plan more too.  Even small things too, like making decisions about which pencils I need for my next drawing, makes me feel more like me and less like someone who is defined by breast cancer.  hope you can find your inspiration soon too, even in the small things. No doubt I will still have days where I’m too tired to talk , that’s natural, but we will be better and we will be ourselves again . Let us know how you get on, x ... View more

Wishing you lots and lots of luck, fingers and toes crossed for you. It’s always the uncertain that makes you anxious and unable to settle so I’m glad you’ve made a decision and a plan . Let us know how you get on with them and I shall do the same x ... View more

Morning Mazzaw, I didn’t have a clearance, just three sentinel nodes but I identify with the pain and discomfort you are having. It does get better. I remember at two weeks it was the worst , by three weeks it was improving and by four weeks, apart from underside of arm and armpit being numb, I was almost back to normal and the nerve endings in my skin much less sensitive . Keep doing your exercises if you can, I know the soreness gets you down and makes you want to cry but it will be better. Hope this helps . Big hugs and lots of luck   ❤️ ... View more

Good morning SMH good luck to you too, I am now three weeks post op from the extra ‘cavity shave’ I had so we are healing together. I was reluctant to start taking letrozole as you know but the radiotherapy service where I live is really struggling for capacity . I won’t be able to start radiotherapy until beginning of December (and that’s only a provisional date), which will be twelve weeks from my lumpectomy date. I’m not complaining because I know that there are people a lot worse off than I am but I am understandably anxious about the delay. Therefore I decided to start letrozole as soon as possible to help give myself some kind of protection whilst I wait for radiotherapy. I have been taking it for just over two weeks and so far so good. Bearing in mind what other people have said about letrozole making them feel sick and dizzy I decided not to take it in the morning. I normally drive about twenty miles to my studio in the mornings and didn’t want to feel queasy or dizzy whilst doing so. I understand that other people who have taken it at night have had night sweats and having been through all that once already with the menopause ( am now 70), I didn’t want to do that again. So… I take mine at 5pm with a small square of flapjack. So far no problems. The non-Letrozole associated nausea that I’d already had for months seems to be diminishing ( could just be coincidence but I am nevertheless grateful for it), and I’ve not had any dizziness either. I have noticed a small flush after eating my evening meal but probably only noticed it because I’ve been looking for it. So far no weight gain, in fact I’ve lost 5lbs, have been trying to eat less but more healthily. I know that oestrogen is stored in fat cells so am trying to get rid of some of those to help myself too. I think the timing of taking them is good so far, it’s suiting me and has the advantage of not interfering with having to fast for other tests too. It’s early days but so far so good. I am ‘giving them a go’ and have my fingers and toes crossed that I get no side effects. I hate taking tablets but am also risk averse and I want the best prognosis I can get as I still have a lot to do and achieve. Am happy that bone density scan has been scheduled and will be done at intervals to monitor whether Letrozole is having an effect on my bones. If it is I am told that there are measures that can be taken to help with that, so I feel confidant that I am being appropriately cared for on that score. Oh yes, I am taking the ‘accord’ brand Letrozole. I see from the forums that different brands affect people differently, so far ‘accord’ seems to be ok for me.  I wish you luck in your decision, it’s not an easy one but it’s personal to you and we are all different. I hope I’ve been of help to you either way .  lots and lots of luck to you going forwards, big hugs to all of us ❤️ ❤️ ❤️ ❤️ ... View more

Hi Sandpiper,  thank you so much ❤️ ❤️ ❤️ I really really appreciate your positive story , it’s made me feel that’s it’s possible to take letrozole and not get the crippling arthralgia that some folk are bedevilled with. I haven’t had a bone scan yet but am told that it’s in the system , and am waiting for a phone call from radiotherapy to organise a planning session date. Trying to move forwards positively so have booked to get hair cut and coloured , not been to hairdresser for two yrs so treating myself to a beautiful pale lavender coloured shiny Bob. That should bring back a bit of a sparkle !  Hope you continue to improve and stay well , take care, big hugs ❤️ ... View more

Hi lacewing, thank you ❤️ My BCN is lovely but implacable. I asked her if I could speak to my oncologist and she said I didn’t have one. I understand all the drug mechanisms ( I was a nurse for 30yrs before retraining), but couldn’t get my BCN to understand that I was asking why I needed to take a drug that decreased my oestrogen levels if at 70yrs I don't have that much oestrogen. Her reply was that I obviously had enough to grow breast cancer (paraphrasing). When I asked if I could have bloods done to ascertain my present oestrodial levels to the answer was no. So… I’ll either get it done privately or just throw in the towel and be a good girl. I understand that there are great financial restraints on our nhs at the moment and I wouldn’t wish to add to that burden by asking for an unnecessary investigation if the outcome is likely not to be affected, especially when I can see with my own eyes that other folk have greater needs and are having a much much worse time.  Anyway … feel I’m making a mountain out of a molehill so, onwards . big hugs ❤️ ❤️ ... View more

Thank you so much lacewing, I really appreciate hearing about your experience. I saw my BCN thus lunch time. Haven’t got answers to all my questions but she has given me the confidence to go ahead and try it, with the knowledge that she is always there for me if I run into problems . Picked up the tablets today and resisted the urge to call in at the canal side on the way home and Chuck em in. BCN said she would prefer me to start on them today but accepted that I needed some normal me time before commencing, we agreed on two weeks. So now I need to be a grown up girl , put on my big girl pants , pull em up tight and get on with it. Nurse also said that although there are no guarantees, most people in her experience tolerate letrozole well . So hear goes . Lots and lots of luck to all of you on this journey, big hugs ❤️ ❤️ ❤️ ... View more