Well said, Tigress. Couldn’t have summed it up better myself.
(My mother dwindled with dementia over 11 years; my father-in-law over 9 years. Heartbreaking.)
There is worse than cancer.
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Hi TDG
Thanks for expanding in LVI and PI. Very helpful. Never apologise for lengthy posts (you only have to look at mine on the various threads) 
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Wow! What a response your original post created! I am pondering whether to stop the exemstane too. I am 79 next week, and I took HRT for over 30 years, very happily, and had to stop when I had a very early breast cancer in Sept 2021. Always had my mammos, so imagine the shock. Stopped cold turkey and went through the menopause quickly! Had a lumpectomy, ER7/8, PR8/8 HER- two foci-DCIS 12mm and 2mm. No lymph node involvement. The Predict tool gave me 2% with and 4% without treatment. I didn’t have the RX because my sister- at 76 too had had it and she got burned. I was given Letrozole, which turned me from a lively, young looking 77yr old to a 95-yr old climbing stairsI I had a month’s break which restored pain free days, started again, and back the pain came so I was offered Tamxoifen. I refused that because I have macula oedema and it can cause changes to the retina. I was then offered Exemestane, which I now take twice a week. I suffer vaginal atrophy,(I now use Vagirux) dry, dry skin, wrinkles, thin hair, numb fingertips, and look and feel old. I have read Dr Avrum Bluming’s book Oestrogen Matters, and he advocates taking HRT after breast cancer if someone wants it. All the Onco’s are singing from the same hymn sheet, and do not listen to the person suffering the side effects. I have decided that quality of life is better than quantity, and at my age, I would rather have shorter better quality than suffer being an old, old lady for longer! Oestrogen is vital for so many things in our bodies, and having to take one drug after another to counteract the side effects of removing it, is adding more problems to my mind. There must be as many ways forward as there are people who develop cancer, it is so individual. I wish everyone the best outcome whatever you decide to do, and I know that if I had been younger when it was discovered I would probably have chosen a different approach.
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I’m in this position now. Radiotherapy planning appointment tomorrow & then they want me to start anastrazole. I’ve a 4% risk of recurrence and after struggling for years with a hard menopause, I feel fairly certain that I’m going to be turning this down. I could live longer if I took it perhaps, but that would most probably be with osteoporosis, high cholesterol, high blood pressure, weight gain etc, a battery of horrible drugs with horrible side effects to manage the horrible side effects, and a ruined sex life and painful vagina to just make sure it’s really miserable. A toxic vicious cycle of medication. I’m only 53. But of course this decision also scares me enormously. What price quality of life. I sobbed my heart out through the whole appointment whilst forms were shoved in my direction to sign. Not a kind word offered - a cold, mechanistic form filling exercise in a horrible tiny room with a giant bearded man. It was completely mortifying. I don’t drink, eat healthily, do bags of exercise and I know that won’t necessarily stop it from coming back but I want to be able to enjoy whatever time I do have. This whole thing has been physically and emotionally brutal.
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Thank you for your absolutely brilliant post which described the situation so clearly. You are right that there are no concrete answers/solutions. The best we can do is gather all the information we can and then make our decisions based on what is right for US. Thank you again.
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Bravo to you.
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I feel for you Sarah, I really do. I don’t know quite what the reason is for the seeming lack of compassion in some of the medical professionals. I couldn’t fault those involved with my rads, kind and patient to the last. I didn’t have chemo but know plenty who did and they say much the same. But oncologists and some BC nurses who work for them are not uniformly as re-assuring. I wonder if it is because they have to give a lot of patients really bad news and cannot allow themselves to feel compassion in order to protect their own mental health. I also wonder, with regard to BC, as I suggested in my post above, they don’t really know our outcomes and they know they don’t know so are deflecting by their demeanour. Maybe they are very busy and do it day in, day out so it becomes routine 
I know I am done with my oncologist as I tried on three occasions to get answers that were incredibly important for me to understand my situation. Getting “it could do, it might do, we don’t really know that, we couldn’t guarantee that, it’s impossible to say” to every question in an increasingly frustrated way followed by the phone going down before I could say thank you and goodbye, made the penny drop. The endocrine treatment is empirically proven to be beneficial to many women with Er+ cancer hence being universally pushed but there are no guarantees that the net gain, when SE are taken into account, will be in the long run, for any given individual hence we get the suck it and see approach.
I hope rads won’t be too harsh on you. I found it straightforward and had no skin breakdown so easy for me to say. I like to think any stray cells were zapped to hell! As for the endocrine treatment, you could always try it and if it impacts your life too much, abandon it then. Many women tolerate it very well… If you don’t take them just be absolutely sure that you will be able to look yourself in the mirror should the worst happen and say ‘it was my choice and I own this’. The chances are in your favour that the worst WON’T happen but there are no guarantees. I wish you the best for your continued treatment and hope that the whole thing is disappearing into the rear view mirror very soon.
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I declined anastrozole. I’m 62 grade 1 stage 1 er/pr+ HER2-. Had a lumpectomy and 5 days radio. That, according to my oncologist, leaves me with a 1% risk of reoccurrence. The anazrozole might reduce that by a further 30-60%.
I have no kids, I’m on my own, widowed. My fifty’s with menopause and arthritis were just awful. I’ve got a miracle new hip and I feel ok about life now. I am not prepared to go through hot flashes, insomnia, and all the other horrid stuff again.
If it comes back I’ll deal with it then. I was determined to take the best care of myself with diet and exercise when I made that decision but I have to say I’ve struggled since my treatment has finished. So sometimes I wonder if I’ve done the right thing.
I want to give my body a chance to heal itself. I guess I’m lucky my prognosis is pretty good, it was found early and treated super fast.
Whatever you all decide, I wish you the best kind of recovery. It’s such a personal thing….
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Hello,
I was diagnosed with stage 1b hr+pr+ her2- in Fall of 2020. I was 63. I was put on anastrazole for 6 months to reduce the tumor and then had a lumpectomy and then re-excision surgery a month later to get all the margins clean. During the 6 months I tolerated the drug as it was reducing the size of my tumor and it was also COVID so the time was crazy, hard to say how I was feeling. After the surgery, no chemo, but 6 weeks radiation and they took 3 nodes one was positive. I went on letrazole for another 6 months at which time I stopped due to having a spinal fusion surgery and I was diagnosed with ostopenia. I wanted to give the fusion a chance so oncologist was ok with me stopping. I then started tamoxifen which I took for a few months at which point my hands were completly falling asleep and I was a mess couldn’t sleep. So I took a break per oncologist for a month or so and then went on a half dose. I took this for quite some time had a DEXA scan and my bone ostopenia hadn’t increased. But I was having major ocular migraines. I would have at least 3 a week and I was developing arthritis in both hands. I finally just quit and the migraines disappeared completly and my hands are recovering. I also was signed up for the Signatera Natura test to determine if I have cancer floating around in my blood. I am surprised no one on here has mentioned this test. At this time I will get tested and then given those results I may decide to go back onto an AI or not. My oncotype score was 13 which isn’t a low score. So I respect everyones comments and knowing we all have to choose what is best for our own particular situation.
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The signature test is controversial. If you are positive there is no protocol for how to handle it and at least in the US, insurance will not pay for any scans or treatment from it alone. And like anything else it’s a screen shot for one moment in time. Even if you come back negative that only means you are negative for right then when your blood was drawn. It doesn’t mean you’ll stay negative.
Thank you for your post, tappin. You echo many of my side effects and opinions. It is good to get validation. x
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Thank you - sold!
Aw, you poor thing, sarahbear, what a disgraceful attitude you suffered from your consultant. I do really think there needs to be an extra strand of training for the medics delivering difficult news and frightening treatment plans. Some are so cold and emotionally unintelligent. It sounds as though I was a little luckier than you. It is a bruising experience, even with the best of deliveries. I hope nothing is as bad as that for you from now on. Wishing you the best of luck in your choices and the future.
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PS, sarahbear.
I echo Tigress’s heartening experience of radiotherapy. The radiologists were all lovely - friendly, kind, cheerful. I too sailed through with virtually no impact - no sore, burnt skin (in fact, mine barely discoloured at all). Subsequently, it remained in tact and comfortably moisturised. My only disappointment was with my chest-centre mapping tattoo. The other 2 were practically invisible but this one smudged and is now a more visible reminder. Not the worst disappointment, just another sigh.
I found out (just in time to make use of it) about RESPIRE, which teaches you via video demonstrations, how to practice relaxation and, more importantly, the ‘breath hold’ technique for minimizing the exposure of the heart and lung area to the radiation. I would urge you to take a look well in advance of radiotherapy starting :
https://respire.org.uk/resources
This was mentioned by a private breast consultant I opted to see, following a very negative experience with my NHS oncologist. She didn’t even seem to know about it, much less recommend it. I mean, why isn’t THIS a bog standard direction?
I didn’t get on with Anastrozole myself; persevered for 10 months when SEs ramped up even more. So I thought, ‘blow’ this for a game of soldiers and simultaneously kicked bisphosphonate infusions into touch too. Not advocating that, just saying it’s okay to make that choice if it sits better with you. x
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Welcome jetr, and thanks for posting … and thanks for flagging up the Signatera Natura test ! I have never come across this anywhere before.
Where (in the world) are you?
Since the issue of free cancer cells is what plays on my mind the most, it is something I would be very interested in. Of course, we may develop new cancer cells in time, but I just want to get a sense of whether or not the treatments I had (and what they’ve cost me) have worked at this time.
I have become acquainted with a lady who has Stage 4 bone mets (following primary invasive lobular cancer). That’s quite confronting, since I had the same type of primary. Anyhow, she gets regular blood tests to check for tumour markers ( CEA test, CA15-3 test, CA 19-9 test and CA 125 test ). It’s imortant to note that these can show as raised for other non-critical reasons, but when tracked over a period of weeks, they might suggest further investigation. This is a request I intend to pursue, it’s just that quite frankly, I’m all out of warrior momentum for now and am just relishing feeling like the old me (or as good as I can be) after months of miserable SEs from hormone therapy which I’ve now stopped.
Hi - please don’t assume that we haven’t done our research. Luckily, if you have access to all the clinical papers, research etc, plus the stats one is able to reach an informed decision. I’ve done precisely that & in my case decision was to take the meds. I respect yours (however & why you got there). In my case very informed (plus understood both the maths & the science). Good luck & keep well Ana.
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Hi Mir-ie my thoughts are with you. Wishing you lots of luck in whatever you decide to do 
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I’m so pleased we can all be so respectful to each other about this. It’s so refreshing when you see what’s going on in the world.
Anyway, here’s my view.
My maternal grandma had dmx in 1971 in her 70’s. As I was only 4 at the time my mother only told me about this when she herself was diagnosed in her 60’s in mid 1990’s. My grandma lived past 90 with severe osteoporosis. I have no idea what other treatment she had.
Fast forward to my mum. Living 400 miles away I knew very little about her diagnosis. I know it was picked up at a routine mammogram, which she rarely attended. Her view was always, if there’s something wrong with me I’d rather not know. She had lumpectomy with clear slnb, RT and 10 years tamoxifen.
Two years ago, now parents living very near me so I saw them daily, aged 88 I saw rapid decline in mental and physical help within hours. Doctor involved, despite mum’s protests. Straight to hospital via GP. She had stage 4 terminal cancer originating in uterus and spread to lungs stomach and brain. I had taken her for memory test 5 years earlier as I was thinking dementia. She had short term memory problems the. Told to come back if she deteriorates in the next 6 months to return to gp. She remained stable until 2 years ago. Anyway, after the jaw dropping diagnosis, there was nothing to be done for her other than keeping mum comfortable at home. She stayed with us for 6 weeks before passing away. My dad admitted that 5 years after her bc mum had a smear test which needed further investigation. She chose to do nothing. This was the 1st I knew about it.
In 2015 my sister in law had cancerous kidney removed. In 2021 spread to her lungs and brain. She was offered treatment, but refused everything. She died early 2022, 5 months before my mum. My widowed brother told me last week that she refused chemo because of side effects.
My reason for taking everything offered is predict score for my g3 multicentric hormone+ her2-, oncotype dx 31 score.
I don’t want to regret in a few years not doing all I can to get rid.
I had a chat with a friend of a friend before I started chemo, who had done this 20 years ago, in her 40’s. She looks fabulous now and doesn’t regret a thing.
Sorry for the long post!
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Hi Misty,
I’m in Arizona. My oncologist ordered the test and it is covered by medicaire. I believe the company is out of California. If you google it there is all sorts of information. My oncologist told me about it and spoke with me about options were it to be positive so I don’t feel like I will be in the dark. My understanding is that one continues to be tested whether positive or negative so it is not a one time event. It seems people on this blog are strongly one way or the other. Thank you for your support.
Interesting debate.
Once you are told the bastard cancer has returned, your mindset suddenly changes re: meds, largely because you are utterly terrified on hearing the news!
My primary BC was 14 years ago. I was aged 38. I hit it with surgery, chemo, tamoxifen; the lot.
It still came back.
I reluctantly take letrozole and ribociclib.
I’m too scared not to. I believe in quality over quantity of life, but I’m still too scared to refuse the drugs. I have teen children, I want to see them
flourish.
It’s SO hard if you hear the words metastatic BC.
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