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 | Online Network

FLClover
Member
9 months ago
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 🤍.
WhiteLight
Member
9 months ago
Hi @arpie

Thank you so much for the information and link on medical cannabis. I will definitely look into it as abetter option than the opioids I am currently on.
arpie
Member
9 months ago
Yes, @WhiteLight - you take the oil orally. There is currently a HUGE movement trying to get Medicinal Cannabis Oil made legal and on PBS as it is a 'natural herb' - as the alternative are opioids and other strong drugs that are highly addictive & people can die from overdoses.

Depending on the strength of the oil that is prescribed for you - you may need fewer drops, too!! Everyone is different - and when starting on the oil, you 'work up' gradually, from a couple of drops an hour to the number of drops needed to reduce your symptoms. That is then 'your dose'. It is called 'titration'.

AI side effects aren't relevant to the size of the cancer eith .... they can hit anybody, hard! :( Luckily, some get NO side effects!

My cancer was only small too - and like you, I chose to do the 5 years for AIs .... then, in discussion with my Onc, I've increased it to 7 years - so I finish up on AIs this time next year. ;)

Check out this thread for lots of info on Medicinal Cannabis Oil - the movie, in particular ....
https://onlinenetwork.bcna.org.au/discussion/19569/medicinal-cannabis-oil-amp-reduction-of-pain-improvement-in-well-being/p1

take care
WhiteLight
Member
9 months ago
So that's how it works. You only take oil not actually smoke it.

Yes it does sound worth a try but maybe as my cancer was so small he might not consider it worth prescribing. He already told me if I had too many side effects, it was such a low risk of it returning I needn't take any AIs. But that's my fear that it will return somewhere else in my body, so I have to give at least 5yrs a go.

Thank you @arpie
arpie
Member
9 months ago
@WhiteLight - I have a letter from my Onc saying that I am on the Medicinal Cannabis Oil for side effects from Breast Cancer treatment ..... I carry it with me every time I am in the car. I haven't been tested yet. ... I take a number of drops under my tongue about 30 mins before I go to bed ... I've never ever felt 'compromised' the next day .... It is the THC component that shows on a roadside test ... not all Medicinal Cannabis oil HAS THC in it ... so could be worth a try?

take care
WhiteLight
Member
9 months ago
Thank you @iserbrown,

I admire you being able to put up with side effects for 10yrs, that's amazing. I have been told I need to be on them for 5yrs by my GP but my oncologist seems to not be as concerned! I am willing to keep going on Letrozole if I knew the side effects would settle down, or try another one.

I am not able to take Tamoxifen as I have Factor V Leiden blood (aka. sticky blood prone to clots) and have had many uterine polyps removed. It's a shame as I know a friend who has done okay on that with no side effects at all, I was hoping I'd be able to try it to but my surgeon warned me it was not an option.

I will persevere and hope changing around the AIs or having a break for a few weeks will help :)
WhiteLight
Member
9 months ago

Thank you @FLClover,

It's good to know other people have similar symptoms, so maybe not early dementia. Has your brain fog cleared now you are off them? I hope so. I already wear knee supports and wrist supports for doing my knitting but they get in the way much of the day (when cleaning, baking, etc). I have now added ankle supports.

I think I will ask my oncologist if I can try another AI but as you say they all have different side effects, but maybe others may be more bearable than on Letrozole. My GP has said giving up was not and option but my oncologist seemed to be of the opinion that as it was so small (to me it was still Cancer, no matter how small !) I could do without AIs as the risk of recurence was so small. I was quite surprised when he said that. I don't want any recurrence ! :/
iserbrown
Member
9 months ago
@WhiteLight
It's a so and so when the body says I don't like this and there's a lot of side effects!
Your Oncologist will guide you along and yes there are other Aromatose Inhibitors to try!
I am coming up to 10 years next year, thank goodness- I have been on Tamoxifen, Letrozole, Aromasin and back to Tamoxifen.
I personally think it takes time for the body to adjust and this stint on Tamoxifen for me is just the normal bone pain, which I had with all of them otherwise it's a countdown to the end of taking them.
Take care and know that we all have different reactions and hopefully your body will adjust if you are given an alternative
Best wishes
WhiteLight
Member
9 months ago
Thank you @arpie,

I have an oncologist appointment next week, I have a list of side effects to tell him. He did say if they don't suit I could try another one, but he also said (surprisingly) that my cancer was "so small" and with no lymph nodes involved I could choose to stop taking them! Whereas my GP when I mentioned not taking any said it was "not an option".

I hadn't thought of medicinal cannabis for pain, but is it in your system if stopped by the police for a drug test? I don't want to loose the ability to drive, even if it would help with sleeping. :|
jennyss
Member
9 months ago
Dear @WhiteLight,

from jennyss in Western NSW