Hi,
I’m going in for a WLE next week. Was expecting mastectomy, so this is good news. Fingers crossed my (superb) surgeon can get it. Lots to be discovered afterwards, of course, but the thing I’m most concerned about is the hormone blocking drugs. I had a terrible time with menopause, and just coming off my HRT made me anxious enough (luckily I think I may have been coming out the other side - I’m 58). But the thought of deliberately inflicting anxiety, depression and all the physical damage it does (I already have more than enough aches & pains, thank you) on myself seems insane to me. Especially as my surgeon told me it reduces risk by 1% of 1%.
Would be interested in thoughts from women who’ve wrestled with this dilemma too. And any steers to evidence/data.
Thanks.
Hello, I also had a WLE and was put on tamoxifen for 6 weeks before I was told to come off it. I had loads of side effects but the worst was swelling legs and loss of feeling/circulation. Gave up the drug 3 weeks ago and still getting leg problems. Anxiety went through the roof on tamoxifen (like you I had to come off HRT). I’m waiting to see what happens but it seems counter intuitive to me to give out this drug when you’re trying to recover. The trouble is you get told that you should stick with it, preserve etc when it makes you feel miserable. I felt “well” all through the process but I’ve felt ill after on tamoxifen. And being told you have to take it for 5 years… it’s a fine balance. Of course you want to give yourself the best chance but to feel crap… I’ve got perimenopause to deal with and I’ve never felt right since Tamoxifen.
Good luck with the surgery.
good wishes for your surgery.
Hi Onward
Perhaps you’re overthinking right now. You assume you will get all these unacceptable side effects but you won’t know till you try and, for all you know, your treatment plan may change with surgery and it will have been wasted anxiety. Remember too that the people who get on happily with any of the AIs are unlikely to post here - how welcome would their relief be to everyone who’s having a rough time? As welcome as someone like me saying I sailed through menopause! So the picture is skewed. Remember too that we are all individuals, we each have a unique experience but the one thing we do share is a wish that the breast cancer won’t come back. No amount of data analysis or clinical evidence will stop it if that’s what is going to happen.
You need to consider the idea of the statistics carefully. Statistically, it would appear that the AI will be of minimum benefit to you. But we are not statistics. 1% of 1% sounds pretty pointless but, in the thousand who don’t get a recurrence, someone has to be that unlucky 1. You need to ask yourself what your thoughts will be after you’ve been discharged - are you the anxious type whose thoughts will keep turning back to bc? Are you a what iffer? Are you someone who, having made a decision, lives with it? If you are certain you can take the risk and live a happy life without the constant What If, then take the risk. It is small after all. But remember that bc is a pernicious disease and there are no guarantees. You could take every precaution advised and still find it’s come back A recurrence is hard to deal with, a Stage 4 diagnosis even harder, and not one of us knows who will be hit. None of us ever thought we would be the chosen ones. Anxiety, depression, joint pain, these can all be managed medically or through a raft of alternative approaches. A Stage 4 breast cancer is a different kettle of fish altogether, believe me.
Sorry not to have been that helpful but my personal view is that we try everything that’s recommended. If it’s intolerable, then we can stop the treatment. Quality of life is essential. But don’t get ahead of yourself - you have a way to go yet - and remember what ‘they’ say about Statistics.
Hope the surgery goes well for you,
Jan x
Onward, we are all well familiar with the side effects of endocrine therapy because thank goodness women who have them can come on-line and find other women going through the same thing. However, those of us who do well have no need to find anyone else to discuss problems with because we don’t have them. I am one of those women. In fact my oncologist told me that most women were “one of those women”. She said women who are active and lead a healthy lifestyle tend to do very well. I would advise not to anticipate the worst but instead think that you’re going to be like most of us and do fine on them.
I will also offer this little bit of anecdotal evidence. I like to read and because of my diagnosis last year have read a lot of people’s breast cancer stories. When they relapse and come on-line I’ll look at their comment history just to see if they’re patterns. This of course is not absolute but I’ve been rather shocked at how many women didn’t follow their oncologist’s advice on taking endocrine therapy. It’s enough so that if I can tolerate them I’d like to be on them for the rest of my life.
Hi onward,
i also had wle and lymph node removal and then radiotherapy and tamoxifen for 5 years. I was dreading it to be honest as I was well and truly through my menopause! I can’t say I’ve had no side effects - but have had few night sweats to contend with again but not every night and bit of insomnia I have been taking it for a year and think it’s small price to pay for “keeping the cancer away”. I have tried various brands and find Tilomed is the one that suits me best
hope this helps
sparkle