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Long term aftereffects of treatment

SLI1612
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I had breast cancer in 2018 which was treated by surgery, radiotherapy and 5 years of tamoxifen which I finished Sept 2023. I was diagnosed with an undifferentiated connective tissue disease in 2021 which my rheumatologist is certain was caused by my breast cancer treatment and hormonal changes (menopause) caused by tamoxifen. Earlier this year I had a short bleed which I thought was my body trying to return to pre-menopause as my oncologist said there was a chance this could happen. I saw my GP who referred me for tests and after a few months of various tests I have been told I have endometrial hyperplasia which is a side-effect of tamoxifen and caused by oestrogen. I am being listed for a total hysterectomy in January as if left, these cells will turn cancerous. I feel angry that I am still suffering side effects of the treatment for breast cancer, but I am also worried because my breast cancer was oestrogen receptive, so if my body is producing oestrogen again, does this mean I am at a higher risk of my breast cancer returning. I dont know who to turn to for advice and reassurance and I feel like I am going through all the emotions of cancer treatment again. 

  • My name is Alison and I am one of the Cancer Information Nurses with Macmillan Cancer support. Thank you for getting in touch with us and I hope you find the online community a helpful and supportive environment.

    I’m really sorry to hear about everything you’re going through. It sounds incredibly challenging and it’s completely understandable to feel angry and worried. The side effects of cancer treatment can be long-lasting and complex, and it’s important to address both your physical and emotional health.

     

    Given your history of oestrogen receptor-positive breast cancer, your concern about the potential risk of recurrence due to oestrogen production is valid. Here are a few steps you might consider:

     

    Consult Your Oncologist: Your oncologist is the best person to discuss your concerns about oestrogen and the risk of breast cancer recurrence. They can provide personalised advice based on your medical history and current condition.

    Seek a Second opinion : If you’re feeling uncertain, getting a second opinion from another oncologist or a specialist in breast cancer can provide additional insights and reassurance.

    Talk to Your Rheumatologist: Since your rheumatologist has been involved in your care, they might also have valuable input regarding the interplay between your connective tissue disease and your cancer treatment.

    Support Groups and Counselling: Connecting with others who have gone through similar experiences can be incredibly helpful. At Bupa through Macmillan there is an offer of up to 4 free remotely-delivered counselling sessions.

     

    Consider Talking, counselling and support groups for breast cancer survivors or seek counselling to help the process.

    Kind Regards

    Alison W, Cancer Information Nurse Specialist 

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

    Ref/GS

     

     

     

  • in reply to Alison W _Macmillan

    Thank you Alison, I really appreciate your response and recommendations. I have been discharged from my oncologist for some time, but I think I will reach out to the Breast Care Nurses at the hospital where I was treated to see if they can ask any questions on my behalf as I still have an annual mammogram there. My breast cancer treatment was at a different hospital which doesn't make sharing details easy but at least it is a start. 

    Thanks again for your help. 

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