Forum Discussion

Annirama's avatar
Annirama
Member
8 years ago

Tamoxifen side effects or just going crazy

Hi Ladies, 

i was diagnosed June 2017 HR2 negative breast cancer in each breast, treatment has consisted of 2 rounds of lumpectomy and and now just on tamoxifen while I wait for my bilateral mastectomy and reconstruction.

Lately, i have found that i am getting quite frustrated at myself and am unsure if i am just losing the plot. Everytime i feel something off with my body i assume its caused by the tamoxifen and straight away jump on google to confirm my suspicions.

In addition to the standard hot flushes i have been getting terrible tiredness. No matter how much sleep i get i am just so tired. its difficult to get through a day at work. By mid afternoon i am exhausted. I normally get a second wind but by the time 9pm comes around i am done. 

i also find that i have become quite absent minded and forgetful which adds to the frustration. i misplace things, forget what i am doing halfway into the task. other times i sit there and stare into space because i don't know what i'm doing. 

When i spoke to my partner about it, he seems to think that i'm just looking too much into it and kind of just brushed me off. Am i really just a hypochondriac? 
side-effects
tamoxifen
  • kezmusc's avatar
    kezmusc
    Member
    8 years ago
    Hi @Annirama,

    You're definitely not going crazy.  I have put up a few posts on the side effects I have been having.

    http://onlinenetwork.bcna.org.au/discussion/17439/tamoxifen-bone-aches-brain-fog-and-poor-memory-any-one-else-experiencing-these#latest

    http://onlinenetwork.bcna.org.au/discussion/17758/decided-to-have-a-holiday-from-tamoxifen-over-christmas#latest

    Plus a comment in the "Refusing tamoxifen" thread as well.

    My brain fog and memory is horrendous.  My daughter got home last night.  Said hello and went to her room.  10mins later I am up turning the verandah light on for expecting her home soon.  

    I also get total brain shutdown under stress as well.

  • Afraser's avatar
    Afraser
    Member
    8 years ago

    I too am not on Tamoxifen (I am still on Femara) but haven't had these side effects - but there have been plenty of posts on this site from people who have had both fatigue and forgetfulness. Do be wary of Dr Google, the difference between treatments/side effects and individuals are really significant and many unmediated or independent sites may simply have misleading information that can increase your anxiety.

    Many people have reported that exercise helps - I know it sounds counter intuitive when you are exhausted, but it's worth a shot. Star just walking when you can, maybe at lunchtime if you are working. Others who have experienced these symptoms may be able to give more advice. Don't underestimate a certain amount of reaction to diagnosis and treatment - the body can create a lot of adrenalin to get you through surgery and then there may be a physical and mental slump for a while.

    Partners usually do their very best - but sometimes that's about saying what they want to be true rather than what is (which of course they don't know any better than you do). Can be frustrating, but not his fault! Talk to your medical team, ask for advice on anything that will help. I found oncology nurses (or McGrath nurses) hugely helpful in such matters. Best wishes.


  • Zoffiel's avatar
    Zoffiel
    Member
    8 years ago

    Hi @Annirama

    it could be the Tamoxifen, there is certainly enough evidence to say that. It could also be a combination of the drug and the stress of being in the situation you are in. There is nothing restful about breast cancer, and there is certainly nothing comforting about looking down the barrel of a double mastectomy. This is the stuff of nightmares and no-one can be expected to operate as normal while they are in the middle of it.

    Any surgery is very hard on your body and can take months to recover from--it's not just about the scar healing. Worry is exhausting. Looking well and 'coping' is all very admirable, but there are very few who get through the whole shit fight without feeling like you do now. Partners who have no bloody idea are also very common, you can't really hold it against them just because they are clueless. Much.

    Be kind to yourself. There are no endurance prizes and we all do the best we can.

  • lrb_03's avatar
    lrb_03
    Member
    8 years ago
    Hi @Annirama. I'm not on Tamoxifen so can't help specifically with that. Do a search of tamoxifen side effects here in the forum, and lots of discussions will show up, with many useful suggestions. What you are describing,  I've seen many times, & is real!! The recurrent suggestions that come up as helpful are regular exercise for the fatigue and brain training exercises for the fog.
    Take care