Just need some help in deciding on the next step, in Feb I was diagnosed with IDC ER, PR + HER2-, & DCIS in my right breast, no lymph nodes involved. I had surgery & have just completed 15 days radiotherapy & got quite a bad burn area under my arm around the outer breast. I am using Flamigel, salt water flannels to cool & was prescribed some steroid ointment by my GP for burn area. I'm waiting to see how the next 10 days go. Then comes the next hurdle, how do I decide whether to go on hormone therapy or not. I am 73, I was on HRT right up until the diagnosis as I had osteoporosis diagnosed at 49, I have had osteoarthritis since my mid 40s & need a knee replacement, I have a family history of high cholesterol & heart disease, I have Factor V Leiden blood (sticky blood), & have 3 surgeries to remove uterine polyps. I have gastroparesis, & I take several medications already including Palexia tapentadol. I am very tearful (but only when I'm by myself), I'm having trouble sleeping, keep getting hot & cold, & by June I need to decide if I should take medication that may thin my bones & make my joints even worse, & increase my risk of heart attack or stroke. My husband can't see the problem & says just take it. My daughter says the same. I know I am lucky not to have needed chemo, I know I am older when cancer can be expected, I know I will have to die of something, but in my head all I can think about is why would I take a medication that will possibly make all my current problems even worse, just in case breast cancer returns. How do I stop cancer returning if I refuse hormone treatment?Can anyone help with advice?

It’s understandably difficult! First of all what does your oncologist recommend, knowing your history? Would treatment with Prolia or similar medication help? Your family members want you to recover and be cancer free (as you do) but you are also thinking about quality of life. Hormonal treatment can be very effective (I took an AI for ten years after chemo!) but it’s not a guarantee. So far, nothing is. As my oncologist says, after 11 years my chance of a recurrence is greatly reduced. But a new, different cancer ? Who knows. Sometimes it’s very helpful to talk to someone outside your family, a professional counsellor who can assist you in your own thinking (not telling you what to think) so that you are comfortable and clear about your decisions. Your GP can provide a referral. Most of all, you deserve better than solitary weeping and wakefulness. I was 67 when diagnosed, and made some pretty important decisions about who I was and how I wanted to be in the first 12 or 18 months after. No, I didn’t retire! But I did accept that my time was uncertain and therefore very precious, I should spend it with thought but also with pleasure. We all should but sometimes it takes a crisis! Best wishes whatever you decide.

Just an update, I saw my GP and she recommended trying AIs as its easier to start and see if there are side effects rather than not have meds and change my mind later. My oncologist has put me on Letrozole as my bone density was good for my age. So 9 days taking them so far and the only increase in problems that I feel is hot and cold flashes, at night is the worst, and then an increase in pain in my joints generally. As I'm already on good pain relief, it bearable. My oncologist said that if there are any problems we can swap medication or stop them altogether as he thinks the risk of my type of cancer coming back is quite low because it was caught so early. So I feel very lucky that that's the case. All I'm concerned about now is the long term effects of bone thinning, but my GP says they will keep an eye on that.

Hello @WhiteLight, Yes, those splints and supports do get in the way. That’s probably why I was told to wear them at night, but I did try to wear them during the day too, just not as successfully for obvious reasons. I do feel that the brain fog is lifting. Slowly, but surely. Overall, I feel fantastic compared to what I felt like on these AIs. I am taking natural supplements and doing other things to avoid a recurrence. I want to also get myself on cannabis oil, as that’s supposed to kill cancer cells amongst other things. I do understand why you want to stay on them for 5 years. They feel like a security. It’s the reason I went on them too. But they’re not as helpful as I initially thought. My onco told me they only benefit me by 4%, so they’re not really ‘life savers’ and sadly, lots of women have had recurrences even after being on them for years. This helped me make my decision. I want to be really honest and say I don’t agree that your GP has the right to say that. GPs are not specialised in this field, and shouldn’t be giving out that kind of advice, in my opinion only. And there’s always other options. So, I’d rather listen to your oncologist than your GP. These pills really can cause damage and sneakily too. However, if you choose to stay on them, definitely ask to try another AI. It can make a difference in your symptoms for the better, and it doesn’t cost you anything really. Good luck with it all, these are such tough decisions to make 🤍.

Hello @WhiteLight - we get to make all these decisions with the medical information provided (or not) and it is difficult at times. Like you, I had severe osteoarthritis and that was the main reason I decided, with the blessing of the oncologist, to not take them. Other medications came into it after discussing the interactions with other drugs with the pharmacist. I preferred to opt for quality of life, not quantity of life. At the time I knew that it was my decision, the right one for me, and that I would have no regrets. That was almost ten years ago. All the best for your decision. PM me if you want more info. 💖

@WhiteLight I am so sorry to hear about the discomfort you had after radiation therapy - it sounds uncomfortable and must have left you feeling a bit depleted.You’ve asked a great question. As @Afraser said it will be useful to ask your oncologist’s advice especially after you outline your history.I wonder if this podcast about hormone suppressing therapy, including Aromotase Inhibitors on the BCNA website, might be used to you? It helped me understand the pros and cons.https://www.bcna.org.au/resource-hub/webcasts/hormone-blocking-therapy-is-it-worth-it/

Aromatase Inhibitors | BCNA Online Network

22 Replies

FLClover
Member
2 years ago
Hello. Sorry to hear about your pain on Letrozole. I also started out on that AI, and developed carpal tunnel syndrome as a side effect a few months later. It got better after wearing wrist splints every night for 6 weeks and switching to another AI (I didn’t want surgery).
I eventually tried all AIs, and each gave me different side effects, last one being high blood pressure. And I also have brain fog and bad memory from these drugs, so you’re not headed for dementia thankfully.
These drugs do affect the whole body in a negative way. They’re not easy to take at all. I hope you find some alternatives like what Arpie suggested, to help relieve some of your issues caused by them. I stopped mine last year after 3 years on them (and don’t regret it) but that seems to be a controversial topic and not many women are brave enough to, understandably so. It took me a lot of thinking and analysing to make that decision.
Good luck with it 🤍.
arpie
Member
2 years ago
Sorry to hear you are having nasty side effects @WhiteLight .... have a chat with your Onc ..... they may suggest a 'break' from Letrozole for 3-6 weeks and/or a suggestion to swap to a totally different AI. I started off on Letrozole for 6 weeks, then swapped to Exemestane for 6 months, then onto Anastrozole for the last 5 years - I finish AIs next year.

Take care - and don't be afraid to ask about alternative pain control .... Medicinal cannabis Oil can help relieve pain AND help with sleep!
WhiteLight
Member
2 years ago
So now I'm 5 weeks on Letrozole and the joint pains are getting worse in my hands, feet and my hips in particular, as are the hot flashes. I'm struggling to get to sleep, and when I do (usually with the help of a meditation app) I often wake because I'm so hot. My memory is getting foggy now too, could that be the Letrozole? Or am I heading for dementia?
Yesterday I saw my GP and was sent for a hand x-ray as it looks as if I have something called erosive arthritis in 4 of my fingers and 1 thumb. I've never heard of that before, but it could explain the increase in pain although I'm on 2 painkillers. The radiographer said she wasn't allowed tell me but she showed me the x-ray with tiny holes at the joints on my hand.
It's really not much fun getting old. To cheer myself up I went for a coastal walk in the wind and drizzle with my husband, rather chilly but felt a lot better.
arpie
Member
2 years ago
Wishing you all the best, @WhiteLight xx. Take care xx
WhiteLight
Member
2 years ago
Just an update, I saw my GP and she recommended trying AIs as its easier to start and see if there are side effects rather than not have meds and change my mind later. My oncologist has put me on Letrozole as my bone density was good for my age. So 9 days taking them so far and the only increase in problems that I feel is hot and cold flashes, at night is the worst, and then an increase in pain in my joints generally. As I'm already on good pain relief, it bearable. My oncologist said that if there are any problems we can swap medication or stop them altogether as he thinks the risk of my type of cancer coming back is quite low because it was caught so early. So I feel very lucky that that's the case. All I'm concerned about now is the long term effects of bone thinning, but my GP says they will keep an eye on that.
Julez1958
Member
2 years ago
Hi @WhiteLight
Nit everyone gets side effects or bad ones, so it’s worth giving these drugs a try given their value in preventing the cancer coming back.
If you do get side effects it’s important to tell your treating team as soon as possible.
I got joint pain in my hands and eventually developed “ trigger finger” I had a cortisone injection and it settled down .
I also had a baseline bone density scan That showed was osteopenic - I was prescribed tablets for that - if you are suggested that it’s important to have a full dental check up before they start them.
Take care and best of luck.🌺
WhiteLight
Member
2 years ago
Thank you Afraser, arpie, Tri, June1952, & FLClover, for your replies, its really reassuring to hear others opinions. I am trying to read up as much as I can and watch BCNA YouTube clips. Maybe I could be one of the lucky ones and not get too many side effects, and I know I will forever blame myself if cancer comes back and I haven't at least tried AIs.
I see my GP next week so I will hopefully get an honest opinion from her. I'm not sure about my oncologist, as he mentioned the AIs and followed it with all the great things oestrogen does for a women body, unless that was just his way of not sounding negative about the meds!
I will post updates after my appointment with him in June.
Thanks again for the advice :)
arpie
Member
2 years ago
So sorry to hear of your diagnosis and discomfort following radiation. I hope you see an improvement soon xx

Like you, I come from a big arthritis background too - and the AIs definitely made mine worse. :( I was 64 when diagnosed, and now 70. I was quite fit & able to do most things - but the AIs can definitely decrease your day to day 'enjoyment of life' and ability to do things that previously you just took for granted! ...

It is good that you are querying whether to take them or not. It ends up being a very personal choice.

Re AIs .... it can be a tricky one - it is more of the 'what ifs' than anything. What if it comes back & I didn't take the AIs .... yet others have taken AIs and it has still come back. :( Your Oncologist should give you the 'likelihood of return' statistics .... and if they are very low - I would fully understand you not taking them. I am 'weaning myself' off them just now - I could have stopped last year (the 5 year mark) - but opted to continue for another 2 years 'part time' so that I still have 'some cover' but not all the side effects, which are not always very pleasant.

Talk to your Onc about it - you could try them 'every other day' & see if you have any nasty side effects so at least you KNOW - BUT ... so long as you are happy with whatever your decision is ..... just go with what you feel is best for you xx

Take care & all the best.
Tri
Member
2 years ago
@WhiteLight I am so sorry to hear about the discomfort you had after radiation therapy - it sounds uncomfortable and must have left you feeling a bit depleted.
You’ve asked a great question. As @Afraser said it will be useful to ask your oncologist’s advice especially after you outline your history.
I wonder if this podcast about hormone suppressing therapy, including Aromotase Inhibitors on the BCNA website, might be used to you? It helped me understand the pros and cons.
https://www.bcna.org.au/resource-hub/webcasts/hormone-blocking-therapy-is-it-worth-it/
June1952
Member
2 years ago
Hello @WhiteLight - we get to make all these decisions with the medical information provided (or not) and it is difficult at times. Like you, I had severe osteoarthritis and that was the main reason I decided, with the blessing of the oncologist, to not take them. Other medications came into it after discussing the interactions with other drugs with the pharmacist. I preferred to opt for quality of life, not quantity of life. At the time I knew that it was my decision, the right one for me, and that I would have no regrets. That was almost ten years ago. All the best for your decision. PM me if you want more info. 💖

Forum Discussion

Aromatase Inhibitors

22 Replies

Recent Discussions

Taking collagen powder while on Tamoxifen

Zoladex 3 monthly available but not PBS covered for women

Has anyone completed 10 years of zoladex?

Ceasing zoladex

Letrozole question