Ditching the 5-year sentence of hormonal therapy?

That is the question we all want answered @"Holly Prevails".  Plenty of people still get recurrence even with doing all the recommended things.  

I hate Tamoxifen with a passion and it hates me right back.  It does absolutely effect my quality of life if I am on it for too long.  3 months is about as long as I can stand it before I start feeling like a totally different person. Not only does it effect my body, but after a few weeks it starts doing weird stuff to my head.  And love life....well, we know what happens to  that with these drugs.

I have spoken with my onc numerous times.  He tells me my side effects are rare and quite severe.  I had a bit of an argument with him at my last review and said that maybe they should crowd source a bit more to see what people are actually going through.  Not just the side effects listed by the pharmaceutical companies. Seems that losing your libido is relatively low on their radar and not really worth talking about to the doctors.

I complain about anxiety when I am on it so it's like here take these anti depressants.  Blah blah blah, 

At this point in time I am running it 3 months on and 3 weeks off.  Not ideal I guess but he says it's better than not taking it at all.  I can switch to zoladex and exemestane but he says that's more toxic than tamoxifen so effects may be worse..

I highly doubt if I am going to make the 5 years let alone 10.  This will be my 3rd attempt.  The first break did a lot to settle the hot flushes.  I still get them but no where near the severity.  The second break has cleared my head somewhat so far but I have only been back on them for two weeks so we'll see how that goes. It normally starts to kick in about 3 to four weeks of being back on it.

The pain in my lower back and left hip is constant and my joints have all started to click and complain.  Makes sleeping difficult as the longer I stay still the worse it gets.  I take calcium, magnesium, D3, Glucosomine, Vit C and B+ mega something or other.  Does nothing for the pain but I think helps with energy levels.  

The temptation to stop taking them is enormous for me as I feel pretty close to completely normal after two weeks off. 

These side effects are real, they don't appear to be as rare as what he's saying from the research I have done.  I do know my own body and I would really like to be taken seriously.

With the amount of people getting breast cancer these days and the volume that are and are going to have to take HT something needs to be done to fine tune the toxic effects of these drugs.  All these things for a maybe it won't come back if you take it maybe it will.  Will you be able to live with the choosing not to take the drugs if it does come back even though it might have even having take the HT.   
Is there even any follow up stats done years later on people who flicked the drugs? Or are they just off enjoying there life?


Confusing.  Absolutely.  Any answers either way...nope....not yet.

@zoffiel - How'd the chainsawing go?

I took Tamoxifen for 5 years, no problems. Had a recurrence just after the ten year mark. Worked brilliantly, hey?

 I started Letrazole last year, moved to Anastrozole 6 months ago  and am seriously thinking of giving the AIs the flick. Ive had my ovaries out and my weight is, meh, not terrible. That's all I can do to 'naturally' manage my hormone production.

What is terrible is the muscle and ligament pain. Its slowly turning me to salt. I have no idea if going through the chemo performance twice is to blame, what contibutcont rads had and what is just aging, but I believe the AI is wrecking what is left of my life. I have little confidence that I am 'cured' . Am I wasting my time? No idea.

 Its likely I'll continue for a while, but am very likely to eventually refuse the drugs if my physical condition continues to deteriorate. For the record, I walk 6km every day, swim 8km a week, do 2 yoga classes, 2 body balance and a deep water aqua a week. Plus cut wood, dig holes, garden, ride and shovel mulch. I just can't live with the pain. I'm over the pain. And the fatigue.

@Brenda5 Check with your BreastCare nurse. I see a community funded psychologist who specialises in breast cancer women. She told me she's available to help at any stage of this rollercoaster.

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Ignore dumb doctors @Brenda5

@Deanne You're right about the length of the AI studies. I've read about how they're now waiting on results from the 15 year statistics.

My oncologist is putting me onto Anastrozole shortly. She's said seven years for me, that the stats for the five - seven period warrant staying on it but that the gain for seven - ten years is minimal.

I think you have highlighted the biggest issue with Hormone (or actually anti-hormone I guess) Therapy. A lot of people have trouble understanding what the benefits really are. For example, will taking it prevent or just delay recurrence? Why does it not work for everyone? Why does it seem to stop working for some people?

From what I understand the research is limited by the number of years that they follow up on. They simply don’t know exactly who it will work for and for how long those protective benefits will last after we stop taking it. They also don’t know who would be ok without taking it at all. I hope that one day soon they might find out more and these questions might be answerable!

But for now these are questions best answered by our own doctors who know our individual medical situation and have a much better understanding of the research and current recommendations than we do.

I know for my situation I have been told that an AI is considerably more likely to make a difference for my chance of recurrence. I have also been told that, for me, 10 years is better than 5. I have some side effects that I wish I didn’t but have also found that, for me, some of those have been reduced through diet, exercise, supplements and medical interventions.

I think if you have issues then you should let your doctors know. Sometimes there is something that can be done to improve things. At the end of the day, you just have to find out all that you can for your situation and make informed choices. Or at least as informed as we can be without that crystal ball!

I'd be interested to know as well.  I've been on Tamoxifen for 3 years now with very few problems (tingly feet but they are bearable).  My oncology registrar mentioned changing my tablets when I go back next year and I am wondering why considering I'm not having a lot of problems.  I've heard the others cause more.

@Brenda5 that’s crap!!!