Bless you, please ask on here if anyone can come to see you
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My breast cancer was ER positive, Her2 negative, clear lymph nodes, 14mm tumour. I had a lumpectomy, radiotherapy. I recently stopped taking letrozole after a discussion with the breast cancer team and my G.P. I had taken in for just over two years but started having breathlessness and feeling unwell. Previous to that I tolerated the side effects pretty well. I exercise, eat healthy because at the age of 63 years I had a stroke which took my field vision. I’m 72 now and just before my 70th Birthday had the cancer diagnosis. My predict, which the breast nurse did for me is 2% that it may return in 10 years without AI treatment. My G.P. said that because I’ve had a stroke, the chances of me having another are high and so I am obviously between a rock and a hard place. He wants me to have quality as opposed to quantity. My cholesterol has risen, before the cancer diagnosis I managed with statins and a healthy diet to get it down to 3.5. Now it’s just going up even with the statins. He can’t advise me, no-one can because of repercussions. I think with what the predict said and the high risk of another stroke (they run in my family and I’ve seen the awfulness of it) I’m going to take a chance on not taking it. I don’t know if I’m doing the right thing.
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Welcome to the forum @lori06 I hope you find good support here. I am three months off 70, was diagnosed with a 14mm er+ 8/8 pr+ 6/8 HER2- IDC grade 1 exactly three years ago. Obviously having er+ 8/8 means that endocrine therapy, in my case Letrozole, would be very effective. My family has a strong history of both stoke and dementia, often caused by stroke, which includes my mother, her mother and her sister, and although I have not had a stroke myself, it has been on my radar since the initial prescription of Letrozole. I have taken Letrozole without many side effects since Oct 22 but now my kidney function has begun to crash and, having been tested for absolutely everything that could cause sudden eGFR decline, attention has turned to Letrozole. I have been taken off it for two months to see if it makes a difference. It may, therefore, come down to a decision on whether to risk a cancer recurrence or to risk chronic kidney disease. So I do emphasise with the situation you find yourself in. I am veering towards dealing with the situation that is rather than the situation that might be. I believe there are a number of women, particularly around our age, who have competing comorbidities, on the forum. Breast Cancer Now has an initiative called Someone Like Me through which you could form a 1:1 relationship with someone facing the same challenges as you, to help support you through this difficult decision. You can find out more about it here Someone Like Me | Breast Cancer Now Please feel free to DM me if you want a chat.
Thankyou for replying. I’m new to the forum today and still trying to find my way around it. I just wonder if my oestrogen is going down naturally now because of my age, if so then I will stop taking the letrozole. I was told to have a break of 4 weeks by the team to give me time to think but then I remembered that I had to wear a heart monitor after the stroke and it was mentioned that one of the waves, think it was a q wave, can’t be sure, was abnormal. I’ve only recently remembered that. Up until a couple of months ago I was feeling fine, walking 4-7 miles 3 times a week and doing cardio exercises every morning. I’ve always been active. Then I started getting pains in my jaw and feeling tired during my walks. I was zip lining just before my op and the fear of another stroke was minimal. I take anti-platelet drugs, statins and BP medications plus thyroxine. I did tolerate the letrozole well and feel sad for those who don’t. I ache in the morning or if I’ve been sitting for a while but it wears off after a bit of exercise. I can’t bear the thought of another stroke or cancer, my family need me. I wouldn’t want to be a burden. I’m going to talk with my GP again because maybe I could get feedback from a stroke team and weigh up the risks from both sides. I wonder if there’s a test to determine how much oestrogen we have left at around post 70 years. Or whether my tumour was slow growing. It was ER positive 8/8 but Her2 negative. I just need all the information I can glean. Once again thanks for replying. Best Wishes.
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Do you know what grade your tumour was as ours sound very similar in size (14mm) and histology (8/8). Mine was Grade 1 so slow growing. I had a bit of DCIS around it but even that was low grade. You must definitely get all of the information you can from every facet of your care. Can I also suggest you give the nurses here at BCNow a call? I guarantee you will feel better for it. They don’t rush you and are very experienced in helping you talk things through so you can get your ducks in a row prior to tackling your various medics. They will be contactable tomorrow morning between 9.00-13.00 on 0808 800 6000 or during the week between 9.00-16.00. I can’t recommend it highly enough. I’m sure they would be able to give you clarity on the oestrogen question.
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Yes, I’ll do that. Idk what grade it was, I should do. I can find out on Monday but we do seem to have had a very similar diagnosis. I was diagnosed before my 70th Birthday. I took letrozole as soon as I was diagnosed. Thanks for reaching out to me. It is much appreciated and means a lot. I’m having trouble with my network provider and hope my message gets through. This is third attempt.
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Just found out it’s Grade 2. I found the letter from the breast clinic when the nurse did the predict.
Receiving you loud and clear. If your tumour was less than 2cm and there was nothing found in the lymph nodes, you’re probably classified as Stage 1 Grade 2, hence no chemo involved as the likelihood of spread is low. It is interesting that you’ve been told that you have a chance of recurrence within ten years, presumably you had an Oncotype test as Predict cannot tell you the likelihood of recurrence, certainly not in terms of timespan. Anyway, I would have a chat with one of the BC Now nurses, just to get your thinking straight on the cancer side of things before making any decisions. None of us can see into the future, not the medics, not the prognosticator tools, not us. There will have to be a leap of faith at some stage if the two possible outcomes are not compatible and, ultimately, only you can decide on which outcome to focus on preventing. First job is to collect all of the data - good luck.
Thanks. I know what the GP will say anyway because of the jaw, throat and chest pains. I expect it will be a trip to the hospital for another ECG. Angina was mentioned but I underplayed it. I just need to tick everything on my list and then I’ll just do what they think is best. It could be something simple like too much thyroxine though. That has happened before. I’m at the mercy of my hormones haha. They’ve always been unruly. Everything really kicked in when we retired. I can’t blame him for everything but it did get on my nerves having him fussing around and meddling with my routine. 
Wouldn’t have it any other way though. Take care. x.
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Just want to say thankyou and I’m wishing you all best
My network is driving me mad. If I go AWOL, it’s because my posts won’t go through or they only show part of my message. Take care. X.
Thank you @lori06 . I am three weeks away from my third annual mammogram check so a tiny bit of scanxiety is beginning to kick in, particularly as I’m off the Letrozole for a few weeks. Head says nothing is going to grow that quickly but heart wins over head at these times… I’m looking forward to finding out if it is Letrozole that is causing the kidney function decline because, if it isn’t, I shall go back on it.
I do hope you’ll be back on the zip line soon!
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I know the feeling with regards to Scanxiety and I’m sure you’ll be fine. I did speak to a nurse about being off letrozole for four weeks and was reassured that nothing will come back in that time but we always have that niggling doubt. I just think, well I’ve been off it for eleven days so I’ll make most of the little break even though my alarm goes off at 10.00 pm every night to remind me to take it. I hope we can both go back on it because I felt safer then and I’m sure you will. I have heard of people taking a three month break with no risks. My breast nurse told me. You’ve been taking it for three years? If so you’ll be well protected. I’ve been researching and asking questions but I expect you have already done that too. I went for my walk this morning and saw all the people doing the Saturday morning run in the park. When they’d all gone past, I started to jog just to see how I felt. I broke into a sweat about 100 yards in haha. I had to lean on a fence and pretend I was admiring the view. There’s a few that put me to shame on that run. Two of them are in their eighties and still running. I made my mind up that I shall join in one Saturday. I could do a walk/jog if I get the results I hope for and I hope you get the results you want. To all the people out there who are in so much pain and living with anxiety and depression, my thoughts and prayers are with you now. I wish you all the best. 
.
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Hello, I’ve just had surgery and am seeing my surgeon next week for my results. I’m ER 8/8 so I’ve already been told that I’ll be given Letrazole and possibly Abemaciclib
I’m 54 and post menopause. I was taking HRT until my diagnosis and since I stopped, I’ve gotten a bit creaky and my hot flushes are back.
Am I being stupidly optimistic to hope that since my oestrogen levels are already presumably quite low, that side effects could be minimal?
@preferablywithfood. Hi im in a similar situation regarding hrt . I had a wide local excision for dcis but don’t yet know the hormone status yet. Im still on hrt at the moment its to be discussed at my results appointment on Monday. My thinking is that if my hrt is took away then further hormones took away ill be double suffering if you get me . What strength of hrt was you on. Im on a 50 everol patch with utrogestan and dreading having to come off them. Was you given time to come off slowly reducing bit by bit . X
Hi
I was on Femeston 2/10 tablets for about 7 years.
I found the lump at the end of May and stopped cold turkey! My biggest reason for starting it was my mental health and that’s been fine since stopping ( despite this stupid cancer diagnosis) and the physical effects of stopping are annoying but not too awful.
I was given my ER status after a biopsy and at that appointment my consultant told me that I shouldn’t go back on HRT. Because I’d already stopped taking it, there was no need for a discussion about tapering it off.
I do understand your worry - but I don’t think you’ll know how you’re going to feel until you actually stop. For me, it wasn’t anything like as bad as I was thinking it might be.
@preferablywithfood thats good to hear . Yes mine was a variety of symptoms that i went on it . I suppose the only way of knowing is to try . The thought of taking more hormones with blockers does scare me though . Thanks for your reply hope xxx
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Be very weary of these drugs that block the hormones responsible for DCIS as my spouse just discovered this is in the UK - she was given two options one have surgery or take LETROZOLE although the medics are not saying but it has resulted in awful symptoms nausea Hugh bloated tummy and dizziness are so of the side effects Janet discontinued the drug 10 days ago but the symptoms persist - back to the specialist says that symptoms should cease after a few days GP has no answers either - so thinking that the cause is a complete blockage in the Estrogen and Progesterone; then the answer in the short term may be a HRT patch - I think medical science needs to rethink how they approach the problem because clearly the cure is worse then the decease - Janet is 82 and has CAD. The same problems occur with AD THERAPY FOR prostrate cancer but it can be very much worse
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I discontinued a week ago and am still having symptoms although do think may be fading slowly. I think anaztrazole, probably all in the family, is a horrible drug but scared of cancer coming back so going to try leprazole
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I am one year out from my radiation/cancer journey. Clear to date from any reoccurrence. I had estrogen/progesterone cancer and no lymph node involvement .
My Oncotype score was 15 with a 4% chance of reoccurrence with AI therapy.
So I started with Letrozole, unable to take after body pain, depression and fatigue, they changed me to Anastroxole and same side effects and then to exemestane.
After 8 months, I had the rarest of days, my sisters could tell the change in me, my husband said I was OK but I was so depressed.
I followed up with My oncologist and she said take a break for 4 weeks and then try a new prescription classified as a SERM.
Well after those 4 weeks I have never felt better. I am engaging in all my old activities, enjoying life and my body feels great. She also tried me on Cymbalta for anxiety and muscle pain, that has helped to get me moving again. SO I talked to her and told her I was not interested in the next medication as I was going to live life.
I am 65 y/o, retired RN and I feel that I have researched BC and tx to death. I may end up with a reoccurrence but feel very satisfied with my decision. I could not go on like that, I had my darkest thoughts ever through this part of the journey.
Prayers for everyone!
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