I feel guilty as I write this as I have had good news re lumpectomy with clear margins and lymph nodes . I just feel I am being pushed towards hormone therapy without any discussion. I tried to speak to my surgeon but he more or less shut me down with a full expectation that I WOULD go onto hormone therapy . I was sent away with the leaflet on Letrozole which listed 17 common side effects . I received a phone call from my doctors surgery today after they received a letter from my surgeon. As a result I am now booked in for a telephone consultation with their pharmacist on Thursday to discuss medication…… I am not saying I won’t take medication , I just want to know the risk and any statistical benefit to me so that I can make an informed decision . I am told my cancer was grade 2 ILC , 11mm and 2mm with no evidence of spread . I am so grateful for all the care I have received so far and should hear in the next week or so about a planning meeting for my radiotherapy . I am in my 60s and the only health issue I had prior to this was mild osteoporosis. I enjoy an active outdoorsy life and worry about the future and the choices I make.
Hi @llanwinno123 this is a common theme for posts on this forum, particularly for those of us who are 60+ (I was diagnosed at 66 and am now 68). The bottom line is that no-one can make you take any treatment if you are not prepared to accept it. Many feel that they are not given enough information to make an informed choice on whether to accept any adjuvant treatment. The truth is that whilst we may have Oncotype scores, Predict scores, Nottingham Prognostic Index score and all the rest, they are only indicators of prognosis based on tens of thousands of individual stories which have been homogenised so actual hard data for any of us as individuals doesn’t exist. This is why we are generally encouraged to take aromatase inhibitors such as Letrozole (which I was also prescribed) - oncologists best guess at control of recurrence is through adjuvant treatment. Many women tolerate endocrine treatment reasonably well and choose to take it because of the fear of metastatic recurrence. A significant proportion of women, particularly post-menopausal women, choose to take their chances. It just depends on how risk averse you are.
Can I recommend you read two recent threads?
One is titled “should I stop the anti hormones?” which you can find in the Coffee Lounge category and the other is called “Choosing cancer risk over medication risk” which is in the Life after a Breast Cancer Diagnosis category. Both will give you food for thought.
Hi,
I had grade 3 21mm er+pr+ cancer diagnosed Sept 23. After a successful operation margins and nodes clear I had radiotherapy,I am 58 and was on HRT prior to this diagnosis and obviously had to stop that once diagnosed,due to the severe menopause symptoms I am experiencing and due to the possible side effects of letrozole I have decided against hormone therapy.
I had many calculations done and for me the % benifit of 10 years on letrozole was very small.
In 2020 I had triple negative BC so this new primary was unexpected but at the end of ghe day I had to choose whst was best for me and I will take my chances.
Do whats best for you,get all the information from the experts to help you make your decision but also know the risks of not taking it.
I wish you all the best. Its a crappy situation to be inbut we are all here to support as we are all facing the same difficult decisions.
Take care
@llanwinno123 The former thread in the coffee lounge is a bit more chatty as one would expect. The second thread is a bit more of a debate. Both are quite long reads but you may get something worthwhile from them.
You have to understand that oncologists are dedicated to prolonging life so that is where they focus. Letrozole and other similar drugs DO give some degree of protection against cancer recurring so I agree with you that prescribing them seems to be an automatic response.
I tried Letrozole for nearly a year and did not tolerate the side effects at all well. I am 73 and long ago decided that quality of life was the most important thing and this drug made me feel so rotten that quality went out the window. I did loads of research and came to the conclusion that the 1-2% extra protection it provides was simply not a good trade-off for not being able to live as I like to do. I must stress, however, that everybody is different and therefore I am not advocating any particular path. I do think that many oncologists do not sufficiently explain the possible side effects and some are unsympathetic when their patients complain. That is why it is so important to do your homework and work out what is important to you before choosing your path.
Hello from across the pond. I had a lumpectomy 2/22/22 for a 6mm, stage 1, grade 1 tumor. Clear margins and lymph nodes. My tumor was hormone receptive, Her2 negative. I did 3 weeks of radiotherapy plus 4 boosts. I tried letrozole and had terrible brain fog, headaches and neuropathy in my fingers after 4 months. I stopped taking the medication after 5 months. My oncologist is okay with that. I have friends with osteoporosis and their oncologists will not put them on an AI. I also have a friend that was on letrozole for 5 years and had a recurrence 16 years later. I truly believe it’s a role of the dice. I suggest you read any and all studies you can to help you make an informative decision. Wishing you the best.
Letrozole can have very unpleasant side effects, but I’ve been taking it for 8 years and experienced no side effects at all. This is not to diminish the experience of those who do struggle to take this drug. But see how you go with it. It is an effective drug in preventing reoccurrence so read all the pros and cons and make your own mind up. You can always stop taking it if you have side effects.
Hi llanwinno123,
I am in a very similar situation. My cancer is slightly different , Lobular, grade 2, mastectomy but with clear lymph nodes, ER+ve, no chemo or radiotherapy needed (thankfully). Like you I’ve been prescribed Letrozole, my (lovely) consultant explained that although on the face of it the additional benefit appears to be only 1 or 2% she strongly advocated taking it as the averages are just that, averages and it’s a very effective treatment for keeping the cancer at bay.
I am relatively fit, 64, and fortunately have no other medical conditions. The breast cancer was a complete bolt out out of the blue in my active and full life and I feel fortunate that it’s been cleared with no follow up treatment … apart form the Letrozole, and all it’s potential side effects 
I feel if I were another 10 or more years older, and the side effects were severe, I would probably be in a similar mind to Teddy271.
But for now I’ve decided to follow my consultant’s advice and give it a go. She asked me to stick with it for 2 months and if the side effects were intolerable we’d talk again. I’ve been taking it just over two weeks now, I do feel more tired than I did but that may still be post op repercussions (4 weeks ago) but other than that I haven’t noticed anything else, no hot flushes for example. So am keeping my fingers crossed.
I’ll do the 2 months and take it from there. If all’s OK I’ll continue with it and probably will do for as long as I feel the trade off is beneficial.
It’s a tricky one, and as everyone else has said, it’s something only you can decide. Hope you’re getting all the info you need - and all best wishes whatever you do decide to do.
Bee2 x
PS. at the other end of the spectrum I have a friend who has just finished her 5yrs on Letrozole and is so railing against being taken off it ! She feels it was her safety net and wants to stay on it forever ! We are all so different.
Hi @bee2 good luck with the Letrozole, some SE fade away after a while so it’s worth giving it a go. I always bore in mind that some women have Letrozole to shrink their tumours prior to surgery and the average time for that to be successful seems to be four months so I was determined whatever happened to get through 4-6 months in case stray cells were lurking about. I was interested in your anecdote about your friend being fearful now that she has completed her endocrine treatment. There are lots of people, some on here, who feel exactly the same. So it IS very personal. Speaking of anecdotes, I had lunch with a friend today who I haven’t seen for a while. She told me she has three other friends who have been taking Letrozole for much longer than I have and she asked them about their experience with SE, knowing I have had some, and all three had effectively said “what side effects?” Two in their 70s, 1 in her 60s like me. Once again, personal responses. So I wish you good luck with it.
It’s so difficult to make decisions when emotions are all over the place but…. I have decided to take the Letrozole for a few months and just see how things pan out. If the side effects are manageable then I will continue longer. I spoke to my GP and I am not going to start the Letrozole until after I have finished radiotherapy . I can only process one thing at a time just now so want the radiotherapy over and done with first. My appointment letter from the oncology dept came today, 13th March initial meeting with the treatment starting a week or two later . One step at a time….
Bee2, I am 18 months away from finishing hormone therapy, 5 years tamoxifen, 5 years letrozole. I am starting to feel like your friend. If I can carry on for a little longer then I would be happy. I did have some side effects at the start, particularly joint stiffness, but keeping active has helped me enormously.
I think you give very good advice about giving it a go as you can always reconsider later. I’m glad you are coping okay up to now and am sure that all you have been through in recent times has probably added to your tiredness. Wishing you well for your continuing recovery and getting on with life. x
Thanks for your message PeggyCat, could not have come at a better time … I went for my usual 30 minute walk this morning and was very shocked to find it quite difficult. My hips and legs ached after a dozen steps and I felt leaden. Even my ribs are aching 
and I am feeling drowsy. I haven’t done anything different so am assuming it’s the effects of the tablets kicking in. But, it’s the first hurdle and so I will push on. Consultant asked me to stick with it for 2 months and I’m keen to do that to give it a fair go.
Thanks again for your encouragement … I’ll think of you as I pop tonight’s pill , and do my daily walk tomorrow ! 
Hi - I have just seen your post re Letrozole… it was prescribed for me with absolutely no discussion, phone call - nothing from any health professional. I was informed that my prescription was ready for collection. This was after a lumpectomy, also with clear margins and lymphnodes. I did read all about Letrozole before starting to take it though. I kept up with it for about 3 months before the aching joints, bloating and generally feeling like I could savage any person who spoke to me! I asked my GP to change to something else and then I spoke to my Breast Care nurses who advised to stop taking the meds for a couple of weeks and see how I felt then. To be honest, I felt like a new person! The aches subsided, I stopped stacking on weight and I was altogether more cheerful. I was not taking any meds for approximately six weeks - GP had to write to Consultant to get new prescription approved etc.
I am now on Exemstane - one a day, but after taking them since November time the aching joints are on the return. I don’t know for sure if there is any huge benefit to taking it at all… but I don’t have another appointment with my Consultant until August when I will speak to him then.
Best of wishes to you - S
@gundog I am dreading taking Letrozole but will try it for 3 months and if side effects are hard then I will stop taking it. I feel I should really give this a good attempt as I have already refused bone strengthening tablets. They were prescribed without any bone scans or tests……their link to oesophageal problems was the issue for me . My first husband died of oesophageal cancer when our children were very young. The trauma from that time has left its scars, I know the likelihood of me getting oesophageal cancer is extremely low but for me taking the tablets was a red line…
Lot of posts suggest SEs can honestly say nothing problematic after 5 years almost . You need to stay active eat healthily and actually acknowledge hormone blockers are a positive. Before they existed 5 year survival was 50 per cent it’s now 99 per cent with early stage breast cancer . It’s not a coincidence