Being 76 myself I’m interested to hear from over 70’s ladies how they cope with breast cancer & their treatment. Unfortunately, there are so many young women who get cancer that it is hard to make comparisons, as I think if you are older you consider quality of life over quantity. Do a bigger percentage of elderly ladies decide against taking oestrogen blockers compared with younger women? I know it’s mainly my age, my insomnia & anxiety & osteoarthritis that decided me against taking Tamoxifen & choosing quality over quantity of life. Doubts obviously flash through my mind about my decision otherwise I wouldn’t keep coming back to this website.
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My mum was diagnosed at 80. It was her choice to have everything offered as in her words" she was not ready to go yet" she had chemotherapy radiotherapy mastectomy phesgo and is still on bisphosphonates and an aromatase inhibitor. She is remarkable and very well at 83 !!
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A 70+ year old friend of mine was diagnosed last year. We never discussed the exact details of her diagnosis, but she had surgery followed by radiotherapy and then was supposed to take Tamoxifen or similar. However she decided that the side effects were affecting her quality of life, her ability to continue the sports and activities she loved, etc so she stopped taking them.
That was her decision for her particular circumstances. Others will want to take every treatment going even if they are affected by the medication, as they want to feel no regrets.
Perhaps calling the nurses here to discuss your situation might help? Or maybe finding someone via the “Someone like me” service on the website. Looking at all the options and discussing the pros and cons of each can help settle your thoughts one way or another.
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I’m 78, diagnosed exactly a year ago with IDC, grade 1, 6mm, ER & PR + 8/8 HR - I had a lumpectomy and SLNB which came back with clear margins and nothing in the lymph nodes. Healed fine, no real problems. Then 5 sessions of radiotherapy again no real problems just an itchy rash. Since then I’ve been on Letrozole and the nightmare side effects began. I wasn’t living I was existing and the thought of five years of it filled me with dread. Five weeks ago I’d had enough and stopped taking it thinking I would talk to my consultant when I see him next week for my annual check up and mammogram results. But a week later I had a call from my respiratory consultant to say that a CAT scan had revealed “a worrying mass in the centre of your chest which could be cancer”. They arranged PET scan at Bart’s which I am still waiting for the results from, unfortunately Bart’s cancelled the appointment 3 times. This whole scenario frightened the life out of me and I went straight back on the Letrozole. I cannot give you a reason why but the side effects have changed since my break, they are much less and are tolerable.
I will be discussing Letrozole on Thursday with my consultant and I’m hoping he might have the PET scan results.
I honestly think it’s a personal decision and we all have the right to decide what is right for us. You could try it and see how you get on with it, a friend of mine started on it the same time as me and she has had no side effects at all, in fact she reckons they’ve changed her tablets for Smarties.
Think carefully and do what is right for you. Hope it all works out easily for you. xxxx
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Most of the time I’m OK with my decision not to take Tamoxifen, I’m really fit & well at the moment. I suppose it’s when I read about people having a recurrence or it coming back as secondary cancer that I worry a bit, but I’ve made my own decision & will accept whatever happens. I don’t feel we get enough information about oestrogen blockers other than it’s best to take them.
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I was 68 when I had my mastectomy with auxiliary node clearance followed by chemo and then radiotherapy. I had 6 monthly infusions of Zolodronic acid for 3 years. I am 73 now and have been on Letrozole for 5 years now, 5 more years to go!!! None of it has been “a bed of roses” especially the chemo and now the Letrozole. I have very very bad joint pain with the Letrozole but choose to continue with it. I have four lovely grandchildren, 11, nearly 10, nearly 8 and a 6 year old. I want to give myself the very best chance of seeing them all grow up. Everyone makes their own choices according to their own circumstances and I respect whatever people choose. For me it was an easy choice, I also have a very kind and loving husband to support me which makes a big difference. I send all you ladies my best wishes. Take care.
Sunshine21.
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I worry more about what it does behind the scenes so to speak, what other damage it does. Lots of people tolerate it then find they have other things wrong which can be a result of the oestrogen blockers. I’m going to see how I go on at my first mammogram, hopefully it will be clear & I won’t worry as much, if it isn’t clear then I’ll have to cope with the results. It’s never been an easy decision.
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Hi Balcik
I’m not quite there yet ( 65). I have chosen quality of life over tamoxifen as after 14 months after stopping it I am only now starting to feel like I did before I took it! I always believe age is but a number but understand where you are coming from. There is a fear, which I think we all feel, about taking the drugs or not. Some choose not to take at all, some do and then can’t go on with the effects, others do and have no issues. It’s a bit like our cancers, all individual. Life is a crystal ball from the day we were born and this disease, I feel , really brings that to the fore. Go with what’s best for you and get the support for that decision from those around you. I hope my ramblings help and wish you well.
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Have I understood you properly, did you take Tamoxifen for the prescribed 5 years and have been off it for 14 months now? If you did, then from what I read you will have some protection from a recurrence. I’m glad I started this topic, it has been interesting so far. I’ve had 3 calls from my Dr’s surgery in the past week regarding my decision not to take Tamoxifen after I was signed off from the breast clinic. The first call was confirming I was not taking Tamoxifen, the second was asking if I would like to discuss it with my GP, the third today, Saturday, I missed, so now its got me thinking again. It never goes away does it?
Bless you. Very long story short it was decided that I took tamoxifen instead of letrazole. I took it for 4 days and ended up with a severe allergic reaction ! It has left me life changing issues , along with the ongoing issues of stopping HRT immediately on diagnosis. It has been a horrendous 14 months but feel things are slowly settling down,
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Hi Balchik,
I turned 80 this past week, I was diagnosed 3 years ago, lumpectomy radiation,and then the horrible letrozole, at first there were no side effects, after 7 months they started, I couldn’t deal with it at all, I stopped and I go for my mammogram regularly, at first it was every six months, now I’m a year, due in December, like you, I made my decision it’s the quality of life now that’s important.
I had IDC 6mm, with DCIS high grade, I’ve been clear so far, and will deal with it no matter what.
I was triple positive, and high grade, but it was caught early TG.
I’ve read a lot about elderly women and these hormones, lots of issues with heart and osteoporosis, they say no more than 2 years after 75, that’s all I needed to know to quit.
Good luck with your decision!
Trish
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My Mother is 95 and when she got breast cancer approximately 5 years ago all she had was anastrozole…the lump wasnt removed . It has shrunk to nothing apparently and she is keeping quite well considering her age.
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She has also been told she will be on it for the rest of her life. Shes perfectly happy with that and appears to have no side effects.
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Hi balchik
Was diagnosed 2 years ago aged 61 with a different breast cancer in each breast. The more significant was the invasive lobular left side. Double mastectomy (my choice - strong fam hist) and stayed flat. Sentinel nodes both sides clear, but observant surgeon spotted and harvested another one during surgery which turned out to be affected (extracapsular spread, ie broken out of node surface). Had axillary clearance of nodes that side (again my choice, rather than zapping blindly with radiation). I just felt I wanted it ‘all cut away’. Had radiotherapy to left chest wall. Low Oncotype DX score suggested chemo not considered of benefit but was strongly recommended hormone therapy (aromatase inhibitor - Anastrozole) as both tumours strongly hormone receptive. However, I delayed for 5 months (through horror of possible very serious or fatal, albeit very rare, conditions developing as a result). Agonized during those months and eventually decided to try. For the first 6 months I had bearable side effects. Thereafter, they ramped up - hard to fall asleep, hard to stay asleep, so gradually became very tired, irritable, low energy, low motivation, and very painful joints which made moving around the house painful, never mind going for walks, and eventually my hands couldn’t even grip anything. My hair thinned and my skin and nails became very dry. (Also, bisphosphonates seemed to compound the problems and I started getting the worrying side effect of my thigh really aching, especially at night - a symptom that apparently is concern-worthy.)
I thought 'Sod this for a game of soldiers" so I stopped the hormone therapy (even at ‘only 62’) and therefore the counterbalancing bisphosphonates. It took about 3 months to fully return to ‘me’ except that my hair never recovered.
And yes, every night I worry I’ve not protected myself as well as I might have from recurrence, but ultimately it’s all a game of chance anyway. Good luck, fellow chancer !
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I’m also glad you started this thread and it has got me once again seriously thinking about should I stop the Letrozole. I’m also supposed to be on bisophonates but because of stomach issues I’d already decided against those. I think there is going to be a very serious discussion on Thursday when I go for my one year follow up appointment. I’ll let you know what my surgeon says - he isn’t one of the “this is what it says in the manual” brigade and I trust him completely.
Meanwhile ladies I’ll be following this thread, hope you all have one of those better days xxx
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Thanks for your response, it made me feel better. I think my Dr contacting me has set me off again, but I’m still not taking Tamoxifen. I know many women ‘tolerate’ it, I don’t want to. I’m not a pill taker, but I’ve had my problems, spondylosis, osteoarthritis, benign brain tumour, anxiety, depression, insomnia for 40 years, hip replacement & now cancer. I don’t take any medication except the odd paracetamol or Ibuprofen. I don’t want to risk aggravating my anxiety or depression by taking Tamoxifen, as I fight it fairly well with will power I think. I might be lucky & not get any side effects, but I might be unlucky & get some I can’t cope with. I feel like I’ve sailed through my surgeries & RT compared with many women so want to make the most of feeling well. I just feel if it’s going to come back it will.
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How amazing and wonderful she is keeping well. Thank you for sharing her story
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There ade other options as I’m being switched from Letrozole to Exemestane which is a steroid as I got cancer again within 6 years. I had limited issues with Letrozole ie. High cholesterol and sugar levels but have got them down by being careful what I eat.
Hi balchik
Thanks for posting.
As you can see from all the responses, whether to take hormone therapy such as tamoxifen is a very personal decision for anyone. This includes individuals who are over 70 years old as well as those under that age too.
Whilst recommendations for treatments are discussed and agreed by multi-disciplinary teams, patients should receive information on the benefits and risks of them This enables them to consider their priorities and what is most important to them when making an informed decision
As mentioned by some of those who have responded to your post have said, often this decision is made on the basis of quality of life which may potentially be impacted (or is currently being impacted) by side effects of hormone therapies which we know many people struggle with. Some women decide to start on treatment but discontinue depending on how they are affected
It can be helpful for people to know how much benefit they may get from individual treatments as part of their decision-making process. Most find that talking in detail with and getting all the information they need from their treatment team, helps clarify their decision. Treatment teams often use the Predict online tool to help provide and explain treatment benefits for individuals.
You should still be able to access your team to arrange an appointment to discuss this if you haven’t done this already, or if you wish to have a further discussion.
Talking to someone who has had a similar experience can also often be helpful. Our Someone Like Me service can match you with trained volunteers who have had to make a similar decision as you. It may be possible to match you with both someone to speak to someone who decided to take hormone therapy and how they’ve coped as well as one who felt the right decision for them was not to take it. You can be in touch with your volunteer by phone or email and they can share their personal experiences to answer your questions, offer support or simply listen to how you are feeling.
You can ring the Someone Like Me team on 0800 138 6551 or email them at someone.likeme@breastcancernow.org, so they can then match you to your volunteer. If you’d like to continue discussing this here on the forum you can connect with others in the Hormone Therapy section.
As @scientistamafier also suggested, you are also welcome to call our helpline if you would like to talk this through with one of us or have any further questions.
The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks.
The number is 0808 800 6000, If you have hearing or speech difficulties prefix our number with 18001 and the call will go through Relay UK. Our helpline has access to telephone interpreters if language translation is required.
If you would prefer one of our nurses to call you. To do this, please complete this form ticking the box agreeing to a call back.
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Best wishes
Catherine
Breast Care Nurse
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