I do, I think it should be discussed, it’s very serious as you get older, older women should not be on that pill longer than two years, as it causes heart problems, which could be much more serious than the cancer it supposedly is keeping at bay, I had terrible effects from ALS I couldn’t use my hands, for months they didn’t bother me , then it came with a vengeance, I had to quit, and I’m glad I did, quality of life is worth more to me than living as a cripple.
I have since had injections in my fingers and they are back to normal TG, I take each day as it comes ,I turned 80 last Oct, and I have proven that you can live and enjoy life without all the drugs that oncologist push, with their text book learning, my oncologist was very difficult to get any answers from, I had to go to the internet, I spent hours on it,and learned a lot, I still do and I’m grateful to have it.
I’m 3 and 1/2 years out with triple positive, stage 1 high grade breast cancer, and I feel great, I eat and drink in moderation, I don’t take any medication, and what ever the Lord has in mind for me I’m ready.
Hello @Flan
Thank you for your very supportive and inspiring post. It is so important to remember that we have choices in what treatment we have or not and that not all of us can tolerate the AI meds. And if we can’t , then we need to be able to discuss this and support each other.
I am so glad you are living well. I echo your sentiment that it is preferable to living long but in miserable condition. I hope you have many more years of living well ahead of you.
Xx
I think hormone therapy could be handled much better. They know there is a high drop-out rate of up to 40%. I got given my prescription, the same day as my biopsy result, its a lot all at once to be told “you have ER+ cancer, so take these”.
After having lots of side-effects, I took the initiative to look at the benefit stats, I weight it all up, I arranged to chat to the oncologist about it armed with what I’d found out. My BCN had dismissed my questions about side-effects, pushing the narrative that lots of people tolerate them well. If that is so, why the high drop-out rate?
If they gave everyone a follow-up appointment about it, a few months on, it would make the journey so much less stressful, and I think they would find that the drop-out rate would be far less with support and acknowledgement that they are difficut meds to have to take for years. Instead, the onus is on you to find out all the details, to suffer alone and work out for yourself, which aspect of treatment has caused health problems. I think a lot gets put down to chemo. I’m fortunate that, as I didn’t have that, I was very clear on what was giving me grief.
On a happier note, its great to have a night out, dancing to live music with friends down the pub. Rolled in at 2.45 ( 1.45 really) then woke up without a hangover, because I paced myself, and had some alcohol-free Guinness in between. I could get used to this, because we all know, feeling well becomes more priceless when you’ve had so many off days in the past.
Forgot to post a link that maybe helpful Menopause and Cancer charity was started by Dani Binnington who has also had breast cancer in her 30s with young children. She realised that many were told what to take as far as medication and no other options were talked about. They have over 150 podcasts some recorded on YouTube and do live events, soon they will be meeting up at Blenheim Palace as well as inviting people to join their events so you can posts questions etc. I have joined a few online events which were so helpful.
They discuss the menopause toolkit. Some experts are in exercise, nutrition, others are menopause specialists, oncologists, bone health (dexa scans/ bisphosphonates) to name just a few.
I thought it may be helpful as many hormone therapies cause menopausal symptoms which can be debilitating. I personally take 4 other medications to offset my side effects of AI’s. Not sure that is sustainable.
Hope everyone is enjoying the lovely weather, well it’s sunny here. Been doing some gardening. Lost an hour of sleep, not that it matters it’s not that great. Yet another side effects of AI’s.
I, like all of you have had a breast cancer diagnosis and am still dealing with side effects of medication that has been prescribed to help prevent my cancer coming back. I am a user of the forum and get involved with issues relating to my own diagnosis.
As well as a volunteer Community Champion, this role is to keep the forum welcoming and friendly and supporting moderators. I also signpost to BCN sources and as well trusted sources outside of the forum as I have done above.
Please see this link and scroll down to see the role of a Community Champion Getting started on our forum
Hi @naughty_boob, just in from a day of gardening also and soaking up the vit d. You mentioned insomnia… I developed chronic insomnia on Letrozole going from being a good sleeper to getting just 4 and a half hours a night with awakenings every 2 hours. This kicked in after 6 weeks on the tablets. After stopping the meds the insomnia continued because my brain had been retrained. There is only one cure for chronic insomnia once sleep hygiene has been addressed ( ie no caffeine after 2pm, no screens in the evening, using bedroom only for sleep and sex and nothing else, keeping a regular bedtime, cutting out noise and light) and the cure is Cognitive Behaviour Therapy for insomnia or CBTi for short. I found out I could get this on the nhs so asked my gp for a referral to the London hospital which delivers this. There was a very long waiting list but I did eventually get the call to start this. In the meantime I discovered that I could get CBTi for free by using the Sleepio app. This is usually chargeable but can be accessed for free by cancer patients via Onboarding Sleep Test - Sleepio. I have been following the programme since December 2024. It requires a lot of commitment and can take 3-6 months to effect change but it really does work. I am still following the programme and have improved my sleep time to just over 6 hours so far with fewer awakenings. Lack of sleep will impact on our immune health so it is important to improve our sleep to add to our risk of recurrence toolkit. So, lovely people, don’t accept insomnia as another side effect - there is something that can be done N.b. I also think the Menopause and Cancer podcast is great and a very useful and informative resource. Love Tulip x
Hi @Tulip29 Thank you for your reply. I also have used Sleepio app for 3 months and didn’t make any difference. I did all the sleep hygiene things, and I still woke up, mainly due to hot flushes ( heat surges in my case), going to the loo and aches and pains. If I lie too long in one position I wake up and have to move.
I was a good sleeper before my diagnosis and even had some Zopiclone (sleeping tablets) I was recommended to take just one tablet but it did nothing, if I take 2 as per the leaflet I can get about 6 hours. I was told not to take regular as your body gets used to it and ultimately you need it to sleep.
I may give the Sleepio app another go as with the 4 other medications some of my side effects are better than they were when I tried it.
I regularly use the Headspace app which can be obtained for free through some charities and they have Sleepcasts ( audio bedtime stories with mediation/relaxation), sleep music and courses for better sleep.
I wear a Garmin fitness tracker and sleep is poor every day except if I take a sleeping tablet. Poor sleep means your body is not repairing and makes it harder to function.
Thanks, jayesse. Hoping a crown can save having an extraction but the piece of tooth that sheared off went deep so may not be possible. Watch this space (or not … it’s become a bit of a side issue on here, although still relevant.)
Hi, I read a really interesting study from February yesterday, in Annals of Oncology, on oestrogen and BC. It argues that a significantly lower dose of tamoxifen could be seen to have a similar outcome on recurrence but with reduced side effects. Has anyone been able to try a reduced dose? Are oncologists open to debate if you show them credible, recent research? Obviously this isn’t only about reduced side effects but also reduced damage to health. As stated above I’ve not even started taking any yet, but I think it’s a valid discussion point with a treatment team - just not sure how open they are to us patients Googling?!
Hi @floss2 , Interesting you should raise this as todays’s you tube release from Dr Jennifer Griggs at yerbba.com breast cancer is on this very subject! It is entitled " Thinking about stopping Tamoxifen? Everything you need to know". It is very comprehensive and includes a reference to dosing. I should add that it is aimed at people who are taking the drug. As for googling - the genie is out of the bottle. Its just important to be selective.
Love Tulip x
Hey, jayesse–I stopped taking anastrozole after it threw my depression into overdrive. I’ve been on bupropion for years and have done very well with it. I quit the anastrozole for a while to see if it made a difference. It made a huge difference for me. I went from having constant suicidal thoughts every day back to my usual level of depression that I’ve been able to manage without wanting to kill myself multiple times a day.
I’m 67 and my DCIS was high grade and ER negative. The hormone therapy wasn’t worth it for me. We’re all unique in our reactions to treatments and we get to make the decisions for ourselves. My oncologist wasn’t happy about it but my radiologist and surgeon were supportive. If I were younger I may have made a different decision. Since I’m in my “golden” years, I want to enjoy the rest of my life the best way I can.
I took my walk this morning, smelled the wisteria, listened to music and fed the various birds and critters at the pond I love. That’s the best therapy for me. If cancer comes looking for me again I’ll be ready to fight it . I’m at peace and I know you will be, too. This group is a big hug to support you any way we can. Take care.
Hello @homebabe
Thank you for your post.
I thought it was just me who got really depressed on the letrazole as nobody else has mentioned that side of it until you.
I have a history of anxiety and depression and am on 20mg daily of citalopram and that has always been enough for me to manage (along with counselling and other supporting therapies). Even when there have been profoundly traumatic events in my life I have coped, so like you I know that it must have been the letrazole that made me so down. I was on the whole positive and pragmatic all through the prior treatment. Then I started the letrazole and within a week of starting it I started on a very rapid downward dip…
Like you I’m back to my usual self now - I’ll never be totally depression free but I’d say 90% of the time I am pretty well and able to enjoy life the way I should. There are the occasional bleak moments but none of them like those weeks on letrazole and at least with my usual depression I don’t have the scary thoughts I was having on it and am able to remind myself it will pass. The letrazole was just awful.
I am with you in that at age 62 I want to live as well as I can and am less worried about living as long as I can. I am not afraid of dying but I am afraid of having side effects that make me too ill to be able to live happily.
I wish you continued peace and enjoyment of all the things you love xx
@homebabe Thank you for sharing your story and I’m sorry the medication made you feel so poorly.
I am wondering if anyone who has had side effects completed the Yellow Card for the drug, that way the companies can keep an eye on side effects and if anxiety/depression is made worse it could be something they research in future. I completed the Yellow card for Letrozole.
I completely endorse reporting all side effects to the yellow card sceme. I have done so for every single one of my cancer treatments and sometimes went in again to report more as they arose. It doesnt matter if it is an already known side effect because reporting may change the incidence of something from rare to common, or common to very common. Also, many of us are on other meds which may be interacting and this is also captured by the scheme. It also updates in real time. Its also good that it allows self reporting. Love Tulip x
Hi, jayesse-- I’m in GA. The pond is on the Wesleyan College campus. I feed birds, turtles, ducks, geese and lots of birds and ducks just passing through. It’s my happy place. And the stables. You can check out my Instagram page if you’re in the mood for lots of nature pictures. @gaxanadu97
Poor sleep means your body is not repairing and makes it harder to function.
