Morning. I’ve been on tamoxifen for 9 years. I’ve just had an ultrasound for bloating and been told I have adenomyosis. This is the latest complication from tamoxifen as was diagnosed with think womb lining end of 2022 and had polyp dissection. Oncologist advised I have a mirena coil which I have had since then. My question is with this latest complication should I just now discontinue tamoxifen?
Also will these symptoms settle down if I do? Also does this now mean I am more at risk of uterine cancer-is there a link with adenoymosis? Gynaecologist suggested a full hysterectomy in 2022 if the problems didn’t resolve. This is something I can’t do at the moment as my mum died of breast cancer 3 months (not genetic) and it also feels like a radical solution.
Thanks for your time.
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Hi smash731
Thanks for posting. This sounds like a difficult time for you and it’s understandable you have questions.
As you say tamoxifen can effect the lining of the womb. Adenomyosis specifically is not listed as a potential side effect from tamoxifen, and is something you may want to clarify with your oncologist. You can also discuss whether discontinuing tamoxifen after 9 years is advisable.
It is our understanding that this condition does not increase your risk of uterine cancer but do discuss this with your oncologist or gynaecologist. You can also ask whether you can expect your symptoms to resolve if you stop the tamoxifen.
Having a hysterectomy is a big decision, and whether this is recommended would be in consultation with your gynaecologist. At the moment it sounds as though you feel unable to go through surgery due to the recent death of your mum which is understandable, but perhaps could be considered at a later time.
We offer a range of free supportive services for anyone who has had a diagnosis of breast cancer which you may be interested in. They include face to face and online courses and events.
For more details about all of these services, please see the information on the link.
Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000. If you have hearing or speech difficulties prefix our number with 18001 and the call will go through Relay UK. Our helpline has access to telephone interpreters if language translation is required.
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Carolyn
Breast Care Nurse
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