Recurrence

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Hi I am really struggling with this. I was diagnosed with Her2 ER+ breast cancer in my left breast in November 2023 and had 8 lots of chemo - 4 x Docetaxel and 4 of EC. In July '24 I have a Lumpectomy followed by 5 days radiotherapy in Sept 2024. I am now on Anastrozole and Calci D for 7 years. I have also had 17 doses of Phesgo on a 3 weekly cycle with the 18th (and last) being tomorrow.

After surgery I was told that my lymph nodes were clear, no sign that they had ever been involved with cancer, and that margins were clear. The surgeon said that she had removed 1mm of tumour.

I am haunted by the chance of recurrence and although I asked my oncologist about it, she did not say much at all. She even referred to my asking about it in a letter sent as a resume of the meeting but gave no assurances of what my chances are percentage wise or otherwise.

How can I find out or who can give me the information about what my chances are of recurrence?

Rachel C - Macmillan 16 days ago

Hi Blueskythinking,

Thanks for getting in touch and welcome to the online community. My name is Rachel and I’m one of the cancer information nurse specialists on the Macmillan support line.

I’m so sorry to hear that you are so worried about the chance of recurrence of your cancer and that you didn’t get an answer to your question when you spoke to your consultant. I can only imagine the impact this must be having on you.

It’s normal to feel uncertain and have worries about cancer coming back when you’re completing treatment. I wonder whether finishing Phesgo is heightening these feelings for you just now.

Here on the support line, we are independent of the NHS and don’t have access to medical records, so we aren’t able to give you specific advice about your recurrence risk. We would suggest that you ask for a further discussion with your consultant or your breast nurse specialist. They are best placed to give you information about your individual risk based on the stage of your cancer, how your type of breast cancer usually behaves, the treatment you’ve had and the evidence available to them. They should also tell you how you’ll be followed up if your hospital treatment is ending. This should include information about who to contact if you have concerns or notice any new or changing symptoms.

We understand that this is a difficult time for you and there is help and support available to help you to cope with your worries. It’s important to talk to someone about how you’re feeling. Family and friends can help. You can also talk to your GP and cancer team. They can give you advice on ways to manage worrying thoughts and can also refer you to any extra support you may need. We have information that may help when you talk to your team.

Here at Macmillan, we offer a range of support services that you can access including our Cancer information and support team and Macmillan Buddies. I can see that you’ve already joined our Breast cancer forum on the online community. I hope that you’re finding in a supportive space to share ideas and get support from others in a similar situation.

Breast Cancer Now also offers support to people affected by breast cancer including their Someone Like Me service which can match you with a trained volunteer who’s had a similar experience to you. You might like to take a look at their Moving Forward course which aims to help people to adjust to life after breast cancer treatment.

I hope this helps.

Please don’t hesitate to get back in touch. We’d always be happy to talk this through with you in more detail. It’s free to call our nurses on 0808 808 0000,or send us an email. We’re here 7 days a week from 8am-8pm including bank holidays.

Ref: RC/GMcR

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Recurrence