Dcis and Tamixofen

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Lorri70
Lorri70 Member Posts: 191

I had Paget's disease and 3 cm of DCIS, I had 2 operations 2nd one to get clear margins I had 20 sessions of radiation in January. Saw the oncologist she gave me facts and figures about chances of it returning etc (I can't remember the percentages) but it was my choice, I gave myself a month and on March 1st I started was going grand, but recently I'm feeling bad hot flushes all the time I'm feeling down can't sleep at night my eyes are sore and dried out in the mornings I'm forgetting stuff so I looked online and I've decide s to stop taking it, my own dr in May said I was suffering from post traumatic stress and gave me antidepressants which I collected from the pharmacist but I didn't take them.

Can anyone tell me their story regarding Dcis and Tamixofen I'm terrified that I'd need to go through radiation again but I think the risk is too low to be taking Tamixofen

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  • Annette47
    Annette47 Member Posts: 957
    edited July 2017

    Well, first of all, you can’t go through radiation again, at least not on the same breast. Radiation can only be used once, so if you were to have a recurrence, radiation wouldn’t be an option whether or not you were taking the Tamoxifen.

    As to whether or not you should keep taking it, that’s up to you. It will reduce your risk of recurrence as well as your risk of a new primary, but how much of a benefit that is depends on what your risks of getting cancer again are - maybe you can ask your doctor to go over that again with you since you say you don’t remember. My oncologist was a bit wishy-washy over whether I should take it in the first place (left it up to me) and says now that he thinks 5 years are enough, while others recommend 10 years. I haven’t quite decided how I feel about that yet.

    I have found that the side effects that I’ve had (mainly hot flashes, but some insomnia, etc) were relatively minor and tend to come and go. I’ve also found that friends my age (I just turned 50, was 45 at diagnosis) are experiencing the exact same things without having been on Tamoxifen, so I don’t know how much can be blamed on the Tamoxifen and how much is would be happening anyway due to being a peri-menopausal woman.

  • Lorri70
    Lorri70 Member Posts: 191
    edited July 2017

    thank you for replying, I decided I'm done with Tamixofen I stopped taking it 2 days ago we'll see if my mood lifts if it doesn't I'll know it's not Tamixofen making me feel low, I'm wanting to enjoy the summer with my kids instead of giving out to them all the time as I'm cranky a lot of the time and gear up towards going back to work in SeptemberMy Husband thinks I should discuss it with my DR, but last time she gave me antidepressants which I didn't take

  • Lula73
    Lula73 Member Posts: 1,824
    edited July 2017

    Hi Lorri- I took tamoxifen for 2.5 months before I had to stop as it caused a DVD and bilateral blood clots in my lungs. Been off now for 2 months and my eyes are still so dry and itchy and hurt, the acne has not improved, still quite short tempered, brain fog has not lifted and to make things even better, gaining weight I do not need. Saw MO this past week and he said it's high estrogen and my body will eventually clear it and blood levels will go back to normal-maybe another month to get there.

    Tamoxifen blocks the estrogen receptors so cells can't pull it from the blood stream which increases the level of estrogen in the blood stream as it has nowhere to go until the liver can metabolize it. All the SEs we hear about tamoxifen aren't necessarily caused by the drug itself but are actually a consequence of the drug doing what it does (symptoms are not necessarily caused by the cell not getting the estrogen - this is the action of the drug- but by the subsequent build up of estrogen in the blood from the blocking.)Just wanted to let you know you're not in this alone and give you the heads up that it will likely take a while to feel like yourself again. I hope it's soon for you!

  • Lorri70
    Lorri70 Member Posts: 191
    edited July 2017

    thank you for replying Tula, I sort of thought it would take a while to return to normal alright.my eyes are dry and itchy every morning as well and there are eye problems in my maternal family so all of those were my reasons hopefully it won't take too long to get back to normal

  • Lula73
    Lula73 Member Posts: 1,824
    edited July 2017

    and speaking of brain fog – the original reason I wanted to send you a reply was to let you know that if you buy the multi packs of natural tears and use half of each individual dropper in each eye tovirtually flood it, you can get some relief. Twice a day is better if you can. Flooding it is the key though as just a couple drops isn't enough to bring relief

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