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MezDiaz's avatar
MezDiaz
Member
7 years ago

Not allowed Tamoxifen - Recurrence?

Hi everyone ☺️, I was first diagnosed with DCIS and told it was about 1cm so needed surgery. After the lumpectomy they found the cancer was invasive ductal carcinoma and about 2.2cm, but Grade 1. 
4 years ago I had a massive saddle pulmonary embolism that I was told I should not have survived and because of this I've been told no Tamoxifen. I sort of feel like I'll have a target on my head for a reoccurence. Should I be worried??

10 Replies

  • My mum is one of them. No hormone therapy available in 1986. Still going strong at 83.
  • If they believe you need to they can offer removal of ovaries to reduce oestrogen and offer possibly aramatose inhibitors as well. I had my treatment stopped early due to heart issues. They said, and rightly so, we don't want you to die of heart disease becauae of your cancer treatment. Your team will weigh up all risks. But do ask is there anything else that can be offered and get the full understanding of risk. All that information helps you to process it.

    Also I know of quite a few ladies who just had lumpectomies or mastectomies 30plus years ago. That's all they had (as thats all they offered) and lived into a ripe old age.  
  • Be guided by your medical team as they have taken into consideration your whole health and tailored treatment accordingly. 
    Try not to worry about recurrence as that's not something that happens to all.  All treatment is very individual.
    Take care and best wishes 
  • @iserbrown yes at first they said I needed the hormone treatment (tamoxifen because I'm pre-menopause) but the medical oncologist said as I'd almost died from the PE 4 years ago (large enough that it blocked most of the blood coming into my heart from the pulmonary veins), tamoxifen was out of the question as the PE is more of a threat than the cancer.
    It has moved out of the milk ducts

  • I haven’t taken Tamoxifen for over 3 years due to the risk of uterine cancer. I’m still here and have had no recurrence. Tamoxifen can be a carcinogen. 
  • My understanding of IDC is that it has moved out of the milk ducts into the breast tissue.
    Have they defined it as needing hormone treatment as not everyone is on Aromatose inhibitors 
  • @iserbrown
     It is invasive, or was I should say. So it changed from DCIS to IDC. I still have radiation to do also
  • No, @MezDiaz
    If Tamoxifen was absolutely necessary your medical team would be stressing that.
    Take heart as I was diagnosed 4 years ago and for various reasons Tamoxifen was out of the question - and I am still here.  I feel blessed not having the multiple side-effects from the drug as any of them would have made my daily living far worse !
    Some ladies are on Tamoxifen and still get a recurrence so who knows - it is all in the lap of the gods.
    Please take your advice from your medical team and have no regrets - live every day the best you can, be healthy and be happy.
    Sending big non-Tamoxifen hugs your way.  Summer   <3