"Failed" 1st round of Chemo- TNBC

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Hi, I just want to say thank you so much for being here to answer our questions. This really means a lot to us!

Background Info: 41 years old, diagnosed with Stage 3 TNBC (>9 cm tumor, Bx ILC, pleomorphic type), which has spread to the lymph nodes (>4 nodes, axillary node biopsy showed metastatic carcinoma). Report says Ki67 index is about 50%. Pending genetic test results, I have no family history of breast/ovarian cancer.

Completed the first round of chemo in the past 6 months (Paclitaxel/carboplatin with Keytruda). The plan was to undergo a mastectomy and then proceed with more immunotherapy.  However, last week, oncologist said the tumor has not shrunk to the point they were hoping for, and she’s considering changing the chemo meds and starting another round of chemo.

My question is: Is it common for chemo not to work the first round, requiring a change in medication or the start of another round before a mastectomy?

Please don’t worry about answering based on your experience, instead of statistics from articles: Are there higher risks of the cancer spreading to other parts of the body by delaying the mastectomy?

Also, is the recurrence risk higher when the first round of chemo doesn’t work? (I’m concerned since I read that TNBC is usually sensitive to chemo initially.)

Thanks so much again!

  • Dear Chocoholic,

    Thank you for getting in touch and welcome to the Online Community. I’m Kerry one of the Cancer Information Nurses here on the Macmillan Support Line.

    I’m sorry to hear of your diagnosis of Triple Negative Breast Cancer (TNBC) and that the first round of treatment hasn’t shrunk the tumour as much as hoped.

    I hope you are coping ok.

    TNBC can be difficult to treat as unlike hormone receptive breast cancers there isn’t a specific targeted therapy.

    The key treatments offered around stage 3 are generally chemotherapy +/- Immunotherapy before surgery (neoadjuvant) in the aim to control the tumour and shrink it to a manageable size before undergoing surgery.

    It can be common for the first treatment to not be as responsive.

    TNBC can use different combinations of chemotherapies and Immunotherapies if needed. It is important to find the right one that your specific tumour cells respond to.

    We understand that these particular cells are fast growing and need to be controlled as soon as possible. Chemotherapy would provide a higher chance of controlling these cells to then be able to perform the surgery more precisely.

    Having had genetic testing, this can influence what treatment may be offered. For instance if the BRCA1 or BRCA 2 gene is present PARP inhibitors might be included.

    Here on the Macmillan Support Line, we are a separate organisation to the NHS and therefore we don’t have access to your medical records to say for certain what treatment options are the most appropriate for you.

    It may be helpful to reach out to your oncologist or specialist nurse (CNS) to discuss this in further detail.

    I have been unable to find specific statistics as you asked but this is certainly something to discuss further with your specialist team.

    If you don’t agree with their treatment plan you can ask for a second opinion. Having a second opinion isn’t a legal right however most doctors are happy to do so or will talk through things again and listen to your concerns.

    You might find it helpful to write any questions down before speaking with your team, to ensure you are getting all the information you need.

    It is understandable that this may be worrying for you that the treatment plan has changed and has led to more questions.

    It can be helpful talking to others in similar situations to yourself. Here at Macmillan, we have our friendly online TNBC chat forum and also Breast Cancer Now charity and UK charity for TNBC offers various specific support too.

    I hope this information is helpful. If you have any further questions, please get in touch again. 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 or contact us through Webchat

    Best wishes

    Kerry

    Cancer Information Nurse Specialist

    Ref KHa/LM

  • Hi,

    Thanks so much for your reply.

    The oncologist went over the latest results with me- during chemo the cancer spread to the other breast.  Not cleared from the original lymph nodes yet.  Started new chemo session today.

    Is this considered "metastasis?  What are the general statistic in terms of prognosis?

    Thanks again! 

  • Hi there chocoholic from NYC

    Thanks for contacting us again after your oncology appointment. I am sorry to read that you have cancer in the other breast and that the cancer hasn’t cleared from the original lymph nodes with the previous treatment. In this situation it would be usual to change the treatment to another type of chemotherapy or targeted cancer drug and I hope that this goes well for you.

    As we are not directly involved in your care, we can’t say exactly what the cancer cells in the other breast are. They are likely to be a new primary breast cancer rather than spread (metastasis) of the initial cancer. But your oncologist will be able to let you know more about that. Your oncologist is also in the best position to let you know about your outlook (prognosis).

    From your username, I wondered if you are in the UK or New York City? Here at the Macmillan Support Line we can give information about UK cancer treatments and services. Cancer Research UK has statistics about general breast cancer outcomes in the UK. It is important to remember that statistics are averages based on large numbers of patients and can’t predict exactly what will happen to you. No two patients are alike and response to treatment also varies from one person to another.

    In case you are in the USA, you can find information about US-based breast cancer treatment and US-based breast cancer survival here.

    I hope that this information is helpful.

    With best wishes

    Debbie

    Ref: DC/KA

  • Hello Debbie, 

    This is extremely helpful.  I couldn't figure out if it was considered "spread" since I probably blank out when I met with the oncologist...so your message is like a light in the darkness.

    Thank you so much!  God bless you!