I'm having loads of bad side effects my Consultant says I could stop it as he doesn't think the little demons will return but it pops up for me..... Say if it does return you should have continued. I'm guessing I may think that in 3 years! How about you?
The reason I posted the question is because my wife is really conflicted over commencing Tamoxifen. She has an inherited eye condition and is concerned that Tamoxifen could/would have a detrimental effect on her eyes, and in time possibly an irreversible one. She has had surgery on both eyes which restored her vision from poor eyesight to excellent. She does not want to jeopardise this. She is also quite scared over the other potentially serious side effects and QOL issues. We both go round in circles calculating and analysing the risk/benefits. She finds it very difficult to absolutely settle on a definite course of action. The risk of distant recurrence appears to be quite low, her Ki67 figure was 4.8% ie in the very low-risk category, and NHS PREDICT produced a taking Tamoxifen survival benefit of 1%, 2%, and 3% over 5, 10, and 15 years respectively.
It is a difficult decision to make, which we know others in this group have had to confront. We were interested to hear about how others were fairing on Tamoxifen, and whether anyone had opted not to take it or had quit taking it, and the reasoning behind their decision.
I can understand your consultant's comment because you are in a good position having had a grade 1 tumour. My wife had a grade 2 tumour. I fully understand your 'what if' feelings, we find that difficult to dispel too.
I can totally understand your wife's conflict. All medication generally has side effects and I guess it's about personally your wife weighing the pros and cons. I was very reticent about taking tamoxifen as I have suffered from migraines all my life, but after starting it my migraines if anything seemed less! The different tamoxifen brands certainly seem to have differing side effects due to the additives when making tablets. I chose to take tablet in the evening so I could have majority of effects when hopefully asleep! I also know some have minimal if any side effects.. Treatment experience is so individually unique
Magnesium citrate powder is good for migraines, stress and better sleep. I think someone on here also said it was good for joint pains whilst on endocrine therapy.
What are the most troublesome side effects you are experiencing with Tamoxifen?
When you mention 3 years, can I assume you have managed to take it for 2? There has been some research on the benefits of 2 years of Tamoxifen. The one below was for premenopausal women.
Why doesn't your wife just try it and see how it goes, as it sounds like you are both thinking what if? If it starts to cause issues she could just stop, knowing that she tried. The benefit is very small, so she has the option to decide:)
“Remember to look up at the stars and not down at your feet. Stephen Hawking,
I know you have your own issues also including eye problems if I remember correctly. I hope your eye problem is now resolved.
The thing is, Tamoxifen has a cumulative dose effect on the eyes, so even if all went reasonably well there is a finite period of just over 2 years where it can become more problematic. She, therefore, feels that 2 years may not be a long enough duration to experience the benefits. It is difficult to find research that specifically corresponds to her situation.
Now that she is in recovery from surgery and RT, apart from an irritating and persistent rash, she feels that her QOL is good and is reluctant to potentially move to an inferior QOL.
She is now 5 weeks post-RT and feels that the clock is ticking, and will have to decide soon on which road to take, rather than keep kicking the can down that road.
I had Tamoxifen and Anastrozole the first time I had breast cancer 21 years ago but as you can see I am still here! I was on the ATAC trial and told at the time that the Anastrazole would be the one to cause my hot flushes and night sweats the most. (see my profile)
As you and your wife are concerned about the eye side effects have you consulted a Specialist or even your GP about this? They may be able to advise in your wifes specific case.I had no eye side effects after 10 years of taking them - but did fill in a QOL survey each time I had follow up and don't remember any eye specific queries, although there was space for any other comments.
I tend to agree with Londonmumof2 and give it a try and see how it goes. The internet is a wonderful source of information but sometimes leads us astray especially on cancer treatments and their side effects.Wishing you both well in making your decisions . xx
Yes, we have consulted with various medical professionals. My wife’s inherited eye condition married up with Tamoxifen is quite niche. We have not as yet discovered any directly related research on the issue. There is, however, research into the effects of Tamoxifen and AIs on ‘normal’ eyes. The negative impact is more significant than many are aware of.
There are some anecdotal instances on MM if you search for them, I believe I am correct in saying that Londonmumof2 has experienced such side effects.
Peterawake has just posted an interesting list on the % of women experiencing side effects from ET and you will note that eye issues are over a third for what would generally be ‘normal’ eyes.
What concerns my wife most is that after quite sophisticated eye surgery her vision has been virtually miraculously restored to excellent from a previous position of such poor vision she was about to fail the driving vision test. In time and untreated she would gradually have experienced a complete loss of vision. There is the possibility that ET could push her back down that slope and most worryingly even though detected and the ET stopped, the change in vision could be irreversible. It is not absolutely the case that this would happen, but there is a definite risk.
It is a matter of trying to balance risks and benefit and it is not easy. We have looked at the gain from taking Tamoxifen and as already mentioned it is 1%, 2%, and 3% at 5, 10, and 15 years respectively, but this is for overall survival, not recurrence. For distant metastasis and taking Tamoxifen, but no RT, the risk of recurrence is 4.8%. We don’t know what the figure would be if not taking Tamoxifen, but including RT as my wife has received.
My wife also had a hysterectomy and BSO quite a number of years ago and we wonder if this would also have a beneficial effect, and contribute to reduced recurrence. After all ovaries still produce a small quantity of oestrogen after the menopause. Prophylactic oophorectomy is still used as a treatment in premenopausal women.
There are also the benefits of exercise and achieving a healthy BMI plus a good diet and really limited alcohol to be added into the mix of a recurrence prevention strategy.
Despite all the above, there is still the nagging ‘what if’ question! She is now approaching 6 weeks post-RT and wrestles with this conundrum daily, as I do too. When you are feeling well, with good mood, and energetic, it is all too easy to kick the can down the road for another week, but it is getting close to decision time either way.
There are anecdotes of those who have stopped ET, some after just a few months, and are enjoying life many years later, often as much as decades. However, there will be the converse that we don’t hear about, for obvious reasons.
I have been very much involved in previous joint decision making with regard to health matters, but this is a really difficult one!
Your point about the Hysterectomy and BSO providing benefit,in my experience did not help me. I had my first breast cancer a few years after the same operation as your wife and my second breast cancer in the other breast recently.As I understand it a small amount of oestrogen is still produced via fat cells even post menapausally- hence both of my cancers were strongly oestrogen positive.I don't wish to complicate things, far from it but thought you should be aware of how it worked for me. Of course I may be the exception rather than the rule who knows? And that is the problem in a nutshell we do not have a crystal ball to see into the future so have to make our judgements on what we are advised and feel ourselves.I wish you both a long and happy life whichever decision you make. xx
Thanks for your kind closing words, which are reciprocated from the both of us.
Yes, it is all very complicated and crystal ball stuff, as you say.
Oestrogen involvement is complex. Avrum Bluming's book on the matter is very interesting. His references to many research papers which postulate that oestrogen is not the problem are quite compelling. If you then add the highly respected Michael Baum's comments about how the medical professionals, himself included, don't really know how Tamoxifen works. It is really complex!
Yes, the adrenal glands above the kidneys, your brain, and fat cells, all contribute to the production of oestrogen when the ovaries shut down. Isn't it also curious that very young women who are awash with oestrogen, with most/many taking additional oestrogen in the contraceptive pill, very rarely get breast cancer? It is much more prevalent in the over 65s who have low levels of oestrogen!
Like yourself, my wife is strongly oestrogen positive at ER+8, which correlates with the medics saying that Tamoxifen and Ais being of more benefit.
