Hello ladies, I’m one of those people who hate taking any kind of medication and until I was diagnosed with breast cancer I had only taken the odd headache pill.
Now I’m having to take Letrozole daily plus Calcichew (calcium +vit D), with all the side effects of Letrozol, excess facial hair, thinning hair on my head, weight gain, higher blood pressure, increased cholesterol and now osteoporosis, for which I have declined the medication due to the alarming possible side effects;
I really don’t want to take more drugs to counteract the effects of Letrozole or any other necessary medication.
I had a mastectomy and will be having annual mammograms on the remaining breast, and am thinking that maybe I could manage without the Letrozole.
Most people sail through their medications without and side effects, so I don’t want to scare anyone with what I’m going through, I just want to know if anyone has stopped and if so how are they managing.
“I’m one of those people who hate taking any kind of medication and until I was diagnosed with breast cancer I had only taken the odd headache pill.”
I totally understand your viewpoint, I was the same. Since my surgery in May I was put on BP pills, took six months to get it right. After radiotherapy in August I was put on letrozole…cue joint pains, insomnia; given a six week break but symptoms continued, consultant didn’t think letrozole was the cause but we ladies know different! Letrozole depletes the body of oestrogen so it stands to reason that our symptoms are the result and letrozole the cause. My ER/PR hormone status was 8/8 so I feel I must continue on letrozole to prevent recurrence. I had my DEXA scan report last week which showed osteopenia and a FRAX score of 11%. GP advised calcium/vitamin D plus bisphosphonates, told GP I wanted to think about it. The calcium/vit. D I would accept but I already know in my mind that I will refuse the bisphosphonates, the side effects are frightening and taking a pill to counter the effects of another medication? Nope, not happening.
Well aren’t you the lucky one. I gave up after 2 weeks as I went from someone who could still do normal everyday activities to a physical and mental mess. The joint pain was extreme, same as the mood swings, menopause was never this bad and I could of easily walked in front of a truck. I have metastatic breast cancer that has invaded most of the skeleton structure of my body. It took 8 days to feel like myself again after coming off Letrozole.
Big pharma really have failed with this one. I gave it 2 weeks and stopped. Stuff the doctors and what they say. They are not living this nightmare of a drug. I also refused Densomusab and Palbociclib ( Ibrance ) as they are just toxic as well.
I am 74 and had lumpectomy and radiation. Lump was 11mm just grade 2. No lymph node involvement and could not be felt so found with mammogram.
Letrozole is my decision according to the second oncologist. She asked me what else I had going on which impacts my decision. I have osteoarthritis. I also have problems with Atlanta axial joint in neck and am in a pain management clinic for treatment. I take blood pressure and cholesterol tablets just recently. I have underactive thyroid. The statistics show only 1-2 % more survival with letrozole. At least I have a choice . Is anyone else in this position?
I should say my first male oncologist typed up notes without looking at me.
He said I must do this ,this and this. A McMillan nurse made me another oncology appointment without me asking. I was then asked about myself and health. I am very fit. The statistics were interesting but I do not know if I had an oncotype test done or not. When first diagnosed our knowledge is poor and we do not ask much.
I have discovered only some statins re good with letrozole and this statin is not good with my blood pressure pills! Chemists are excellent !
Dear Nickinike
I was interested to read your story
I was diagnosed and had surgery for grade 2 b cancer
I’m getting my final results on Monday
If I have no node involvement and my tumour is small then I too will only have 1% benefit from letrozole with all the risks that letrozole brings including high bp, high cholesterol and possibly heart event
I am 69 so not far off from you
I’m planning to ask my surgeon all of these questions:It seems like a judgement call and don’t want to be just told what to do without knowing all the research done on this issue
Best wishes Sue x
Feeling light headed. Blood pressure raised risk of stroke. GP prescribed blood pressure pills as blood pressure keeps increading. Already on statins. Finally getting DIEP surgery having waited since diagnosis January … Grade 2 3rd time of having cancer
Answered this question two years ago
now five years down the road. It’s not paracetamol it saves our lives . Another 5 years to go no bad side effects no
Trauma . Just take the tablet you don’t know better than the oncologist
It’s great to hear from someone with no side effects.
Fortunately mine are minimal compared to some posts and I am determined to stay the course to keep the cancer at bay.
I was wondering if you’d say which brand you’re taking ? or like most of us does it vary depending on what the chemist has in stock ?
I was doing OK’ish on Bristol but two weeks ago was given Accord, had an awful attack of Hives on Friday & Saturday night, quite scary as it’s listed as an uncommon side effect (1 in 100, so aren’t I the lucky one !)
Will be talking with BCN in morning.
Am hoping sometime to get to your position of no side effects asap !
Usually Accord . Take your Vitamin D and I
Also take cod liver oil every day for joints . It really hasn’t debilitated me and I am 66 . Yesterday almost 20.000 steps and can still walk 8 miles in a day pretty easily if terrain not too challenging. I find it worrying so many posters on here talk about Letrozole as a majorly negative thing . How can it be when survival rates have improved 40 per cent in last few decades - that’s not down to turmeric . Good luck
Hi Milly, my situation is completely different because I’m at high risk for the cancer to come back so I don’t feel that I have the choice to stop taking these medicine (lucrin, letrozole and verzenio). The only one I might say no to is the bisphosphonates which really scares me. With all medications, it’s always a balance between benefits and risks. Wishing you all the best. Marie
Some of us experience debilitating side effects from letrozole that significantly affect our quality of life. I was on letrozole for 7 months and the side effects got worse and worse - even worse than the menopause I went through in my early 60s and that was bad. I used the NHS predict tool in consultation with my oncologist to determine the percentage benefit of continuing to take it. It was less than 1% so I stopped. It’s an individual decision and no one should be judged for making what is the right decision for them.
Been taking it five years five more to go no SEs hate women being frightened by scare stories . Most women do just fine and need to be encouraged not put off .
It’s great that you’ve had no side effects. However, many women do. I was writing about my experience & I know many others who experience debilitating side effects. This forum is for all women who’ve been through breast cancer to talk about their experience and seek support, not just women who don’t have side effects. Surely you don’t think women like me should keep quiet? That would be very isolating.
I’m sorry you have had a bad time women who are not in that situation don’t tend to post here so I worry they will be scared of taking medication which is key to long-term survival. Even if I had had a difficult time with it I would have persevered. My late sister didn’t take Tamoxifen and died of secondary breast cancer so I have always been quite evangelical about taking meds . Hope it all works out for you
When making these difficult decisions, it’s important to look at the specific risk of not taking letrozole for the person. I used the Predict NHS tool in consultation with my oncologist & then considered if I was comfortable with the risk. That will be different for everyone but I think it’s really important that these decisions are presented as a choice. It’s about weighing up the balance between quality of life and risk.