Diagnosed 2 days ago



  • Caroline71
    Caroline71 Member Posts: 17
    Hi Ladies
    more waiting
    i have to wait til the 16th to see the surgeon/oncologist 
    it has not spread to the bones or lungs
    its stage 3 oestrogen/progesterone positive 
    I have to start a drug called tamoxifen tomorrow 
    Has anyone had experience with this as it has some serious side effects
    Risk of stroke, blood clots too so I’m pretty anxious about it

  • primek
    primek Member Posts: 5,392
    Hi there lots if ladies with similar diagnosis and many on tamoxifen. 

    This link may be helpful.

  • kmakm
    kmakm Member Posts: 7,974
    No spread is awesome @Caroline71. What a relief.

    Tamoxifen has been around for decades. Some people have a hard time on it but many don't. Take it with the knowledge that it can be a very effective drug and that you're doing everything you can to stay cancer free. Try not to anticipate problems that may never arise. Hang in there, K xox
  • suburbangirl
    suburbangirl Member Posts: 123
    Hi Caroline,
    Big congrats on the great news! I am so very pleased for you.
    I can't comment on Tamoxifen as I have been on Arimidex for about two months now. (= Post menopausal).
    So far I have been fine, but we are all different as others have said.  
    Hoping you can take time to try to relax over the weekend.

  • Brenda5
    Brenda5 Member Posts: 2,423
    If you are worried about strokes on Tamoxifen just take a low dose aspirin daily. I am so drug sensitive after chemo that half of a tab (25mg) aspirin was suitable for me. Keep up to date with getting your eyes checked as Tamoxifen can have side effects there. Not so much with actual vision but with stuff behind the eye which a specialist can monitor. Keep up your walking exercise as it will help you greatly.
  • arpie
    arpie Member Posts: 7,453
    Great news, @Caroline71 - Tamoxifen is the only AI that I haven't tried yet!  LOL    It has been around for decades, so they'd have a pretty good knowledge of any bad side effects.   From what I've read here, many don't have any side effects!!  Fingers crossed it is the same for you.  Have you started to go thru menopause yet?

    All the best for your Onc Appointment xx
  • Caroline71
    Caroline71 Member Posts: 17
    Hi Arpie,
    No I have not gone through menopause yet, this medication will put me into menopause though from what I’ve been told
    I have a mass on my right ovary also so I have to see the specialist about that on friday and see what will happen with that 
  • primek
    primek Member Posts: 5,392
    I'd  be holding off in aspirin or fish oil...which also thins blood until after the ovary is sorted in case they need a biopsy.
  • Red1
    Red1 Member Posts: 23
    Hi, I've just started tamoxifen, I'm a couple of years younger and hadn't gone through menopause, I had chemo start of the year so who knows if that has done the trick..I had hot flashes from the chemo that have continued on the tamoxifen..but honestly could be the chemo, the tamoxifen or menopause causing them...I was terrified of taking tamoxifen and was expecting all sorts of horrible things to come from it but 4 weeks in and besides the hot flashes and a few moments where my brain forgets what it's doing it's been smooth sailing so fingers crossed it will stay that way..hopefully you will sail through too..All the bestxx
  • Anne65
    Anne65 Member Posts: 425
    @Caroline71 So happy to read that your cancer hasnt spread to your bones or lungs. That must be a huge relief. One step at a time & now you wait til 16th. This disease certainly tests our patience!
    I havent been on any drugs so cant comment on that side for you.
    I read that you have a mass on your ovary. Fingers crossed that is nothing sinister. I had both my ovaries & tubes removed last year as a precaution as my mum died of ovarian cancer when she was just 46 y.o. If you end up having that operation, it is a simple procedure with just 1 night in hospital.
    Wishing you love & strength. xx
  • Caroline71
    Caroline71 Member Posts: 17
    Thank you Anne for your kind words.
    so far the tamoxifen has made me feel a bit nauseas and headachey
    The worst is the overall exhaustion and bone and joint aches but I am only on day 3 of it so I guess there will be a bit more yet to come lol
    I see the gyno on Friday for my ovary so hopefully will know more by then.
    Hope you are having a nice day 
    Big Hugs xx
  • CRM
    CRM Member Posts: 91
    @Caroline71 I have been taking Tamoxifen for almost a month now and had literally zero side effects. 
  • CRM
    CRM Member Posts: 91
    Sorry, my comment wasn't to rub it in as I didn't see your last comment! You might find the symptoms don't get any worse than what you have already felt. 
  • Caroline71
    Caroline71 Member Posts: 17
    Hi CRM,
    no I didn’t take it that way 
    I appreciate your comment ,it is always good to hear how other people find things 
    I am happy to hear that you are doing well on it, makes me feel better about taking it 
    How is everything going for you.
    Sending hugs xx
  • CRM
    CRM Member Posts: 91
    I am good :)@Caroline71 I am a bit in limbo as I wait for the hospital to confirm my dates for radiation.  It feels like there was a whirlwind of scans and specialist appointments and now nothing... just waiting.