Hi all, in May 2020 I found a lump in my breast three weeks later I had a lumpectomy and lymph node removal. I was diagnosed with grade 3 hormone positive breast cancer that had spread to my first lymph node. I had Taylor dx oncotype test which indicated low to medium recurrence risk so I was Given radiotherapy in 10 years of hornone blocker tablets. I have now been on tamoxifen for nearly five years and have had enough of the side effects, my legs ache all the time, I’m exhausted, I have zero sex drive, I have retinal toxicity and lose teeth due to bone loss which the dentist feels could be connected. After speaking to my breast nurse yesterday it has been decided I take a break from the tamoxifen and then discuss at my five year checkup up. I was wondering what happens at the five year checkup up? I have been told it’s over the phone but will include some facts and figures. Apart from the ladies doing the mammograms I haven’t seen anyone since my op. Because of this I went private last year for an ultrasound and breast mri which made me feel a lot better. I asked the dr about a dexa scan but was told they don’t do them when people are on tamoxifen? Is this the normal? I know in other countries they do them as routine?
Oh so sorry you are feeling poorly on tamoxifen. There is a test that can be done called the breast cancer index after 5 years of hormone blockers and the results let you know if you will benefit from the added 5 years of treatment or not.
Used all the time here in US. Hope you have access to it.
Take care
Barbara
Thank you Barbara, I shall keep my fingers crossed.
Hi Cazh24, I was diagnosed with ER positive, PR positive and HER2 positive breast cancer January 24. I'm now in remission but am taking the hormone blocker Letrozole for the next 5 years. I do get some joint pain, usually when I'm in bed. This seems better during the day, when I'm up and about. I've only been on the Letrozole since early November and have now been referred for a Dexa scan to check my bones. I also have zoledronic acid infusions every 6 months, for the next 3 years.
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