I have been diagnosed with triple negative apocrine breast cancer. This has spread to one lymph node. I had surgery a few weeks to remove it and an auxiliary clearance. My oncologist used the Predict tool to demonstrate survival rates for my type of cancer with and without chemotherapy. However there is a later version from March 2024 that although it has apparently been validated by several NHS trusts, is not yet being used by the NHS. When I put my cancer details into this version it gives very different results with far more women surviving with surgery alone, and far fewer benefiting from chemotherapy. The old version has 45 women surviving in ten years with surgery alone, 11 more with chemotherapy, with 18 deaths from other causes and 26 deaths from breast cancer. The new 2024 version using the same details has 72 women surviving with just surgery alone, and only 4 benefiting from chemo, with 11 deaths from other causes and 13 deaths from breast cancer. There is an enormous difference between 45 women surviving with just surgery and 72. I know the 2024 version might not have been validated yet, but I don’t feel I can ignore it in my decision making regarding whether or not to have chemotherapy. Obviously I don’t want to have chemotherapy unnecessarily. I am also aware that there is some evidence that chemotherapy doesn’t work for apocrine cancers, but that they are so rare there is very little evidence. Do you know how robust the 2024 version is and is it safely something I can base my decision making on?
Hi. I believe that the older version is used by many trusts. I have tried both and my % benefit from chemo on old one is 6%, but 1% on new version. However, I read that on new version lower % benefit is considered as it removed the deaths from treatment itself. If I were you I’d ring your nurse and ask. Good luck whatever you decide. X
Thanks bluesatsuma
I had decided to go for chemotherapy and have signed the consent forms for it but having looked at the data from the new version of Predict I’m really not sure now and feel very confused. It has much higher survival rates for just surgery and much lower benefit from chemo, and on that basis I’d be tempted to avoid chemo and just have radiotherapy. I just don’t know if it’s robust enough to make a decision on. I’m going to do as you suggest and speak to my breast cancer nurse, but I’m not convinced they will have an answer. Thanks for your support. Valx
Hi Elviera
I don’t have any concrete answers for you but I was in a very similar situation to you and decided to go for the chemo. It was very doable, though not pleasant of course. I had to feel I’ve done everything I can.
Best wishes
xxxx
I’ve never used the Predict tool as I knew I would get too hung up on numbers and other people’s outcomes. I took the advice of my oncologist and breast surgeon and went straight to chemo as they told me that it was the best way to reduce the size of my tumour ( I am triple negative but not apocrine). I’ve just finished my chemo and the tumour has pretty much disappeared - having been almost 3cm in size. From my point of view, it was important to have tried everything that I could to reduce the risk of recurrence. Unlike hormonal cancers, mine has limited treatment options going forward and chemo can be effective in killing off any rogue cancer cells that may be in your body. I was terrified of having chemo but it was do-able and at least I know that I have done everything I can to tackle this! Good luck, whatever you decide to do, Emma x
Hello Val,
Thank you for posting.
It is understandable that you have questions regarding the different outcomes PREDICT version 2.2 and 3 give regarding the benefit of chemotherapy for you especially, when you are keen to avoid chemotherapy if you can.
NHS Predict is used to estimate what benefit might be expected from treatments such as chemotherapy or hormone therapy. This programme uses individual information about the person and their breast cancer alongside data from large research studies. The new version has been updated to use more recent data and although it has recently been launched, after careful consideration the UK Breast Cancer Group (UKBCG) is not endorsing version 3. They have asked that the new version is validated against international data, and they will review it again once this has happened. The UKBCG are currently advising their members to continue to use version 2 or refer to NICE guidance DG58 to guide chemotherapy decisions in early breast cancer.
Deciding on whether to proceed with chemotherapy is a very personal choice as each person will have a different idea of the level of risk that they are comfortable with. Some people such as @daffodil1 and @ivy-cat wanted to feel like that have taken whatever treatment they can, others may feel that the side effects and risks to their quality of life are too great to consider proceeding with chemotherapy. As @bluesatuma says it is important to talk to your treatment team or breast care nurse about the risks and benefits of treatment for you, in order to make a fully informed decision.
People with triple negative breast cancer are more likely to be recommended to have chemotherapy. This is because hormone treatment does not work for hormone negative cancers and there are therefore not as many treatment options available as @ivy-cat says.
We offer a range of free supportive services for anyone who has had a diagnosis of breast cancer which you may be interested in. They include face to face and online courses and events.
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Katy
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