Stage 4 metastastic breast cancer: Please translate diagnosis & advise re: scans

Dear Wren21,

  Thank you for joining the Macmillan online community. I can see you have joined other forums too, and I hope you find those helpful. My name is Denise, and I am one of the Macmillan Cancer Information Nurses on the helpline.

I am sorry to read about your breast cancer recurrence. This must be a very difficult to time for you.

As we do not have access to NHS medical records it is very difficult for us to be 100% sure and would always suggest speaking to your oncology team about your results again, if something is unclear.

I will try to summarise the information provided by yourself for you and I hope you will find this helpful but please do bear in mind our limitations.

From the details provided it seems, the cancer has been found to be oestrogen/progesterone negative. This means won’t respond to treatment with certain types of medications such as Letrozole (or other medications called aromatase inhibitors) or Tamoxifen.

 As the HER2 2+ is borderline the laboratory did further tests so called DDiSH to establish if further treatment can be offered with a drug called Herceptin. Even if certain amount of this protein is found on the cells it does not necessarily make it feasible for treatment.

 The laboratory tests also suggest PD-L1 proteins on the cancer cells, these types of cancers my respond to a drug called Atezolizumab.

As for the CT scan, changes have been found in lymph nodes and the scan found small nodules which may or may not be cancerous.

It is not uncommon not to offer further tests if someone opted for palliative approach as this will not change managing the condition. The medical team expects the cancer to spread if no treatment is given and the focus will be on symptom management.

I am glad to read you are not experiencing any deterioration, but it can be tricky for the consultants to predict prognosis. This depends on many factors such as other chronic conditions or environmental factors. The prognosis is usually an approximate guide rather than a given timeframe.

If I may suggest get in touch with your breast cancer specialist nurse who can clarify your laboratory/CT results for you.

I wonder if you might benefit from giving our support line a call. We often find we can explain our answers in a bit more detail over the phone, giving you the opportunity to ask more questions if needed. 

I hope this information is helpful. If you have any further questions, please get in touch by email, webchat or phone. The Macmillan Support Line offers practical, clinical, financial and emotional support. You can call us free from landlines and from most mobile phone networks* on 0808 808 00 00, 7 days a week, 8am – 8pm. You can also visit our Online Community, where you can talk to others who have been affected by cancer. 

Best wishes,


Denise
Macmillan Cancer Information Nurse Specialist
Macmillan Support Line

Ref: DK/HP/SMJ

Thank you so much for  such a quick response.  If I could clarify, I was told that the biopsy from the lymph nodes under my arm  were Triple negative.  Also the CT scan showed both lungs contained multiple tiny nodules highly suspicious of metastatic cancer.  Is this what the written diagnosis identifies?   This may be a stupid question but as I have been discharged as I'm no longer having active treatment , I no longer have a breast cancer specialist nurse so who do I contact, is it my Palliative care Macmillan nurse?  Thank you.  

Thanks for getting back in touch with us. I’m Helen and like Denise, I’m one of the Macmillan cancer information nurse specialists on our support line.

As my colleague said, as we don’t have access to NHS records, so it’s difficult for us to be 100% sure. However, it seems your team suspects the nodules in your lungs are likely to be cancer.

The only way to know for sure, would be for them to take biopsies to see if the tissue contained cancer cells. However, there are significant risks associated with this.

As you have decided not to have active treatment, and it therefore wouldn’t change any future treatment plans, taking biopsies would not be seen as an appropriate thing to do.

There’s no such thing as a stupid question, so I’m glad you felt able to clarify who your main contact would be. If you have a Palliative care Macmillan nurse, then they will be able to help support you emotionally and with any symptoms you might have.

If you don’t then your GP will be the best person to speak to about any concerns that you have. If you can’t get to speak to your GP, or you have any new or worsening symptoms, please don’t hesitate to contact 111 for urgent support.

I hope you found this information helpful. Please don’t hesitate to get back in contact with us if you need further information or support.  

Best wishes

Helen K

The Macmillan Support Line offers practical, clinical, financial and emotional support. You can call us free from landlines and from most mobile phone networks on 0808 808 00 00, 7 days a week, 8am – 8pm or contact us by email or webchat. 

Ref: HK / RH