Choosing between tamoxifen, zoladex or no treatment at all...
Emelon1
Member Posts: 5 ✭
Hi all,
I'm new to this forum but not new to BC. I was diagnosed in May last year, had a lumpectomy, sentinel lymph node biopsy, radiation and started tamoxifen a year ago. However I suffered terrible side effects and was given the choice of zoladex as an alternative to it. I have not been on tamoxifen since may this year and have enjoyed a much better quality of life. With zoladex I've been told that osteoporosis and early menopause would result, which doesn't sound great either. I'm really torn about what to do. Is there anyone who has decided to leave it up to fate and not take any treatments at all? Is that an insane choice to make?
Any insight or personal opinions welcome. Thank you so much!
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I am about to start zoladex and am a little bit worried about the side effects but my oncologist said to try it for 3 months and see how I go. If I can tolerate it keep going. Everyone reacts differently but perhaps it is better to at least try. I was not told that early menopause would be a side effect and my fertility doctor said I should not have any issues falling pregnant when I come off it in two years. Who knows...2
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Thanks for the reply, CRM!
Good luck with the zoladex. I might give it a try as you suggest or go back on tamoxifen and endeavour to live with the side effects.
Take care.
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So early menopause whether natural, surgical or metabolic (ie zoladex) has side effects regardless of how long we take it for. Oestrogen is an essential ingredient for female health. It protects our heart, bones and brain. So being in menopause earlier than we would have will place us at higher risk for these things and therefore measures to be taken to treat or prevent complications.
Eg ensuring your calcium is adequate, doing strength training, having regular heart health checks
Fertility is all dependant on everyone’s situation with their fertility before treatment and current age, the zoladex itself is reversible as long as your natural fertility beneath was/is fine ...
Hope that helps.3 -
Thanks @youngdogmum very helpful
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No worries @CRM!
I forgot to say @Emelon1 in regards to deciding to take any of the endocrine therapy (tamoxifen, zoladex or aromatase inhibitors) its a matter of risk vs benefit. If you're hormone receptors weren't particularly high then maybe it might only add an extra 5% benefit to you...you can play around with the PREDICT tool with your BC info and see about survival data if you want, or discuss more deeply with your onc and surgeon
For me; my tumour was >95% ER/PR+, 50mm and I had one node positive, at 27..I get an extra 15% for taking the prescribed therapy at the moment
If in three years I have severe osteoporosis, heart disease and have broken bones..well, I might reconsider because I might be more likely to die at that point from a stroke then BC. But right now, BC is my battle and the sure one to get me soonest.
Does that make sense? I hope so.
There are many women who stop taking these because of the side effects, you wouldn't be alone.4 -
Hi @Emelon1.
It's all so bloody confusing. Facts, figure stats, maybe's and choices that all add up to what you consider an acceptable quality of life . There are no insane choices only what you feel is best for you. Either way there are no guarantees and that's the frustrating bit.
I have had pretty much every side effect on the Tamoxifen list plus multiple that are not on that very short list you get to read and have been fobbed off as not normal. I run it now at 3 months on and 3 to 4 weeks off. There are varying answers as to how long it stays in your system for but the general consensus appears to be a couple of months. So I am sitting in the middle with it at this point. Many, many times I have considered stopping it. Still do.
I find it interesting as to the variation of figures that get thrown around. Nobody tells you at the start that these are the "average" percentages. I guess I assumed it was a little more specific to your individual case than it actually is.
So given that I was 95% both ER and PR positive Tamoxifen supposedly added another 6% coverage. on top of the surgery, chemo and rads. Looks worth it right? Until you look at the fact that the six percent is actually really somewhere betwen 2 and 11. Great if it's 11 except that if I add that in to the rest of the percentages I was given I would get 103% of it not coming back...hehehehe. At 2% I personally feel that it really isn't worth the agro. But who's to know where you sit on the scale.
I also think it's rather depressing having a computer giving me an "average" percentage of whether or not I am expected to live for 10 years.
For example. I was given verbally at the start by the "team" 79% surgery + 10 % chemo + 4% rads + 6% tamox = 99%....woot woot winning.
Predict Tool gives it as: surgery 69 + 7 for chemo + no input for rads so I'll add in the 4 + 8 for HT = 88% less inspiring but still good odds.
If you tick the "show ranges" button at the bottom of predict you can see how much variation there is
So if I am lucky enough to be in top range I get 91% and bottom of the range 84.2% with me adding in the rads at 4%. That's rather a big difference I think.
All the best with your choice lovely.
xoxoxo
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Do be aware that the prediction tools are only viable if you have ductal - not too accurate for any other variety.
I actually can't remember what my stats were/are - it just passed over me. But as my onc said to me - they are just stats and can only have so much meaning for the individual. Yes, they will tell you whether your chance is better this way or that but they can't tell you which side of the statistical line you personally are going to represent. I have chosen to take the path offered even though the side effects are brutal as I can look my kids in the eyes and say that I'm doing everything I can to stay with them. They are very aware of the impact the AIs have on my life and theirs but they'd rather have me around than not. If I didn't have kids, my choice might be different.
However, not everyone gets these side effects so please don't make an early judgement. You can always quit or change down the track if they don't suit or take a drug holiday.4 -
Wow, thank you so much to everyone who took the time to respond! I really appreciate sharing your personal experiences and advice. Why didn't I join this online community earlier?
My plan is to talk to the medical oncologist again about zoladex then decide after that.
Hugs of gratitude to @CRM, @youngdogmum, @kezmusc, @Sister & Summer (who messaged privately)
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Thank you for sharing your experience, @iserbrown! Lucky you didn't have too many side effects.
I am still trying to decide. The oncologist said that I would have to have an injection every 4 weeks for 5 years. That sounds like a long time & difficult to schedule if I want to travel.
Thanks again and take care!
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@Emelon1 depending on where you travel you can take the injection with you and visit another oncology department or GP and have them administer.. or like myself, give it yourself
i suppose if you want to travel to third world Africa for 3 months you might get in a bit of a spot, but Zoladex is used around the world and you certainly wouldn’t have an issue if you were on holiday in the US, UK, NZ etc finding someone to give you your needle, you would just need to do some forward planning.
I don’t think the schedule of interrupting travel should be a reason to not choose zoladex, consider all of the other factors as well1 -
@Emelon1
Yes 5 years is a long process.
As mentioned by @youngdogmum managing the injection in your everyday life is doable.
Remember the end game! You being in a better place healthy and the magic no evidence of disease.
Take care1 -
@CRM I’ve been on Zoladex for 10 months now pretty much since diagnosis, I’ve not had any symptoms as such, there’s side effects from being in menopause such as hot flashes, night sweats and issues down there 👇.. but my symptoms of ankle pain etc have only come in since starting letrozole
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