Breast Cancer Stage 4

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I was diagnosed with advanced local stage 3 breast cancer in November 2020. After chemo, surgery and radiotherapy I was given the all clear and now have to take hormone and bone medication as I was ER positive.

I recently had a CT scan which showed suspicious activity in my left collar bone lymph node. A biopsy was taken. I went for the results of this biopsy to be told that a very small slow growing cancer had spread to my right collar bone lymph node and a further biopsy was needed as it was not responding to hormone therapy and was in all probability triple negative. My Oncologist told me that this was now stage 4 treatable but not curable. He sent off for a PDL1 test also a DPB (I think) test to find out how this new cancer would be treated, either with Intravenous chemotherapy or tablets. I am so confused. Can you please help me to process this news.

Kelly A - Macmillan over 4 years ago

Hi Poppy 55.

Thanks for getting in touch today. What an incredibly worrying time for you trying to deal with the uncertainty of things. It’s no wonder that you are feeling confused about what to expect moving forward.

As we’re not directly involved with your care and don’t have access to all your medical information, we are only able to give general support with any questions. This means we may not be able to answer all your concerns but hopefully guide you in the right direction with things.

It sounds like even your consultant is waiting for the results of further tests to understand more about the cancer found in your lymph node close to your collar bone. As you mentioned this would be known as a stage four or secondary breast cancer.

This can be controlled but it’s important to understand more about the type of cancer from any tests to make sure the most effective treatments are offered. This could include chemotherapy but also consideration of other types of treatment such as targeted and bone strengthening therapies.

PDL1 is a protein that stops the body’s own immune system from attacking cells in the body. Some cancer cells have a higher than normal level of PDL1. This allows the cancer cells to trick the immune system, and avoid being attacked as abnormal cells, so they can continue to grow.

Higher levels of PDL1 are commonly found in triple negative breast cancers which don’t respond to hormone therapy. Frustratingly PDL1 has been shown to be elevated in all types of breast cancer which is why your oncologist has requested a further biopsy for confirmation.

You also mentioned tests for DPB or disease progression in the bone. This helps to understand the extent of the disease in the affected area. Information from biopsy samples and scans are used to assess this.

We’d encourage you to keep in touch with your oncologist or named specialist nurse if you have one during this time. They will be able to give further clarity on any results and treatment decisions. It may also help to write any questions down so that you can focus on what’s important to you at your next appointment.

I noticed that you have already joined our breast cancer forum. The support here from others can be invaluable.

We also have information about other types of emotional support available that you might want to have a look through.

I hope this helps today. Please don't hesitate to get back in touch any time if needed.

Best wishes and take care,

Kelly

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.

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Breast Cancer Stage 4