I had Tamoxifen 16 years ago. I was 32 and had leg pain, hot flushes, night sweats, depression, all kinds of side effects. Seeing as they told me I had no lymph node involvement and that I was only doing the chemo and then tamoxifen as an insurance policy and given that back then, they recommended that it should be taken for five years, I quit taking it after three years because the side effects were horrid. That was my rationale for opting out.
18 months ago, after two years of horrendous pain and doctors telling me it was just frozen shoulder/pulled muscle, I was diagnosed with secondaries in the lymph nodes and liver. It can't be cured. I don't know if taking the Tamoxifen for the full five years would have made a difference, or if the three years worth I DID take gave me 13 years cancer free but what I DO know is that I wish I'd stuck it out. The side effects for two more years would have been infinitely preferable to this.
It is one of these conundrums with breast cancer. They don't really know what causes it to remain dormant then spring back into life.
I can understand why you made the decision you did. You had systemic treatment in the chemo and I have read that they just used to give 2 years of Tamoxifen, in the past. The side effects you were experiencing also sounded pretty awful.
Thanks for your link and info about migraine treatment
The most troublesome side effects I experience since starting tamoxifen are joint pains, leg cramps and determinating vision.
It sounds like weighing the pros & cons of taking tamoxifen is causing its own distress to you both. It's such a challenge when choosing to do what we think is best try as we might we do not have the control we seek. I'm guessing that due to so much conflicting information you could get caught in never ending ruminations. What may need to change for you to allow yourselves to choose your wife's treatment plan?
You mention the deteriorating vision side effects, As already said, that is a significant concern, particularly the potential for irreversible retinal damage. What are your vision problems? The other main concerns are blood clots and PE as experienced by Tolgate51 in another thread.
There isn't conflicting information, it is rather a question of choosing A or B, each with its own risks. However, as you say, we are still caught up in "never ending ruminations".
With regard to your question; "What may need to change for you to allow yourselves to choose your wife's treatment plan"? That is a very good question, and one we have difficulty answering. I honestly don't know what the answer is!
Taking Tamoxifen for 5 years improves my wife's chance of survival by 2% at 10 and 15 years. The problem with Tamoxifen and eyes is that the drug has a cumulative retinal effect. We have estimated that the maximum period she could risk taking it is just over 2 years. Is it, therefore, worth the potential risk to your eyes? As you are experiencing eye issues here is just one reference to the potential problems.
Moocoo on this thread took Tamoxifen for 3 years along with chemo, and this did not prevent recurrence!
We have even sought a second oncology opinion, which taking the stats into account was fairly supportive of omitting EC. However, we still can't get past the 'what if' question!
One thing we have found in all our research is that you can have a good prognosis, take all the treatments, make all the lifestyle changes, and still have a recurrence. Even early-stage BC with a good prognosis is absolutely not 'cancer light' as the general public, friends and family and the media may believe. It is a new reality and ongoing life of concern.
Thank you for your well wishes - the same to you and and your wife. I quite understand your dilemma with this issue and will be hoping you come to a decision that you're happy with. Constantly thinking "what if...." as I do is not a pleasant way to think.
You sound extremely involved and not shy of researching (kudos!) I assume you have ruled out alternatives to Tamoxifen?
We have considered the alternatives. With AIs the eye side effects are largely similar, and an additional negative effect from bisphosphonates should they be necessary.
Talking also from personal experience of cancer, unfortunately, it is perpetually at the front of your mind. When both have cancer, it is even more difficult to tune out and drop it from conversation.
I think you are in the situation many of us have or are in. I'm on Letrozole and the trouble I had starting this tablet, I think I even posted on here and had the support of to help me start. I felt like I was taking some kind of lethal drug and in the morning it would be will I wake up, what will I be like and so on. I took it and thank the Lord all was fine the next day and the next and the next, giving me time to get use to it and seeing that at any point I could stop taking it.
Time moves on and fast too, I have got various aches and pains etc - so then I take each day as it comes. I've gone down to 'half a tablet' - then gone back up to full tablet - then hit and miss how I take it full or half!!
My reason for not stopping..... 'what if' - what if I stopped and the worst happened.... I'd never forgive myself that I 'might' of stopped this happening if I had kept taking the tablet.
What if the worst happens and I am still taking the tablet..... well, I have tried.
I think you are in a situation that no matter what any of us write or what you think or say... at the end of the day you have to do what you are comfortable with.... but, I do think you could or should at least 'try'.
I know a lady that had the same treatment as me and was put on Tamoxifen.... she hasn't started taking it.... this will be getting on for 2 years now!!! the torment she goes though because she isn't taking it - well this again is another upset to work with. He reason for not taking it..... doesn't want the drug in her body, when I ask what 'if' she doesn't want to think about this.
Maybe 'give it a try' - it is meant to be helping - maybe look at if you could reduce the dose - I hope you and your wife find a way around this.
Thinking of you both - the main thing is 'you are still thinking about what to do'.
I'm hoping this makes sense - only my mind says one thing and my fingers type whatever they like x
Many thanks for the encouragement WhatHappened. We appreciate your thoughts on the matter. As it is often said on this site, the support you get on here can be more constructive than from friends and family.
I apologise to those who must be getting bored with this thread and the fact that most just got on with it, without any drama. We have always been very analytical over health and other matters of significance in our lives.
If it wasn't for the niche eye issue, which adds an additional dimension, I guess my wife would have just got on with it.
We will have to try to break out of this circle, or carry on like that lady you mentioned.
Hi Dedalus, just wanted to pop in, I follow all the threads on hormone busters as I’m on Anastrozole. Definitely not bored with the thread! You express doubts and ask questions which some of us ( me at least) think but don’t say. Here is the place where you can express thoughts freely. And ongoing discussions are very useful. In my case I pop the pills because of the hope of preventing recurrence but I do get sick of the ongoing fatigue which is the worst side effect for me. And the forgetfulness is irritating. I was panicking the other day when I could barely open my emails while wearing my ‘best’ reading glasses (prescription rather than over the counter) - then I realised I was wearing my TV/ driving glasses! I do worry about long term side effects, I already have osteopenia but have chosen not to go on bisphosphanates yet as I don’t want more side effects! I take supplements and exercise so hopefully countering some of the bone thinning that way. It’s the classic ‘damned if you do, damned if you don’t’ scenario, we really need that crystal ball to know who really is at high risk of recurrence and who of major side effects from the treatments. You have mentioned some interesting research which I’ll have a look at. Hope you can find a way to make a decision that you’re happy with. Love and hugs to you both, HFxx
HappyFeet1 xx
Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
