Taking a holiday from Tamoxifen

After a lot of to-ing and fro-ing with a Macmillan Nurse connected to Kingston Hospital about side effects, I have been offered to take a 6 week “rest” from Tamoxifen.  Almost simultaneously with this offer and decision, some of my worst side effects seemed to improve.

The reason I got in touch with the nurse in the first place was to try and find out what risk I would face if I stopped taking it. The showed me a 5.6% benefit in 10 years for taking Tamoxifen and I simply wasn’t impressed. It lifts a 78% survival statistic to 84%.  I don’t know what I think of it. Either way, having a 16-22% chance of being dead in 10 years doesn’t appeal. Rather than reach for a bottle though, it makes me want to make more out of the moment. I’m a bit worried about taking Tamoxifen, feeling like crap for 10 years and then dropping dead from Cancer anyway.

I don’t know how to see that 6% as something amazing.

It must be admitted that I am not doing so well with statistical averages so far. I had a 0.1% risk of getting breast cancer in the first place.

Today, or rather this evening, should be the first evening that I skip it. I went from hating this drug and then last Wednesday started wondering if I should just keep going with it. The joint pain seems to have come and gone (mostly), but I am still feeling weak and bloated and simply not myself. Although, today I feel quite alright apart from the stomach upset.

One of my goals during the “rest” is to lose weight. I have been steadily gaining weight on Tamoxifen, and before the cancer diagnosis I was already at a point I needed to lose weight. The recent weight gain is freaking me out. I woke up really motivated to be on a diet for the first time in my life as I know that I can’t procrastinate with it.  I need to make the most out of these 6 weeks.

So, I had just about arrived at a decision to keep going with it and then changed my mind. Here are the pros and cons

Pros

  • Feel better and have a nice summer holiday with my family in the States
  • Take the opportunity to lose weight
  • Have the opportunity to know what is a side effect of Tamoxifen and what isn’t
  • Take the opportunity to start getting fit again with no drugs in the system messing me around

The whole things feels like an opportunity to hit a reset button and I feel much less depressed all the time since taking the decision.

Cons

  • Having to go through the worst of the side effects a second time (but perhaps it will be easier if I know they will calm down).

I can’t think of another con. I think that if it was very likely I would develop a local recurrence or distant tumour the oncologist would have objected. The first point is sufficiently large though. Right now I blame all my new body aches and pains on Tamoxifen, so I also think bullet 3 under pros is valuable too.

I’m a bit worried that it will take 6 weeks to work itself out of my system again and I won’t feel any difference.

I have until about 6pm to make a decision. No matter which way I go I will still do the diet, but I feel much more motivated with the 6 week window in front of me.

The surgery and the radiotherapy was crap but I can deal with that. Taking a drug for the next 10 years freaks me out and I have not bought onto the wonder drug concept.

I see the benefit of taking tamoxifen as small and the oncologist things it’s a good benefit. She keeps saying it’s 6%. She rounds up the 5.6%. I see it as 5.6%  There’s a bigger risk of a distant recurrence floating around at 12% in 10 years, which is only valid IF I take Tamoxifen. The range of risk is 9-15%.  With that perspective it sounds a little more worthwhile.

It’s hard to know what to do, especially as the prospect of kicking off early has become more and more appealing since taking the drug. I think it makes me depressed.

Before I started taking Tamoxifen I had a little liver scare that turned out to be nothing, but I was completely freaked out by the possibility that the cancer has spread. In the past couple of weeks I have been seeing that eventuality as a get out of jail free card because I don’t have much financial security. Sounds dark perhaps, but it is a cold reality. It would suit me not to live too long.

So there it is.

 

 

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