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Helping you through breast cancer treatment

What to ask your oncologist about secondary breast cancer after primary breast cancer treatment

For people who are being treated for primary breast cancer or who are NED after primary breast cancer treatment, thinking and talking about the risks of secondary breast cancer is really scary. I totally get that because that is where I am (three years NED for me). Personally, I think it is important to know a little bit about secondary breast cancer in order to keep a sensible (not paranoid) look out for something that isn’t quite right and needs to be checked out. And also, I think it’s important to understand the realities of life with secondary breast cancer by hearing from those who are in that position. Fear is at its worst when it is fear of the unknown so let’s arm ourselves with some information. However, I understand that this is not the same for everyone – finding out about spread and recurrence of cancer is a personal thing and it is entirely up to you how you deal with this.

For those of you wanting to learn more, here are some things that you could ask your oncologist about secondary breast cancer. This list has been put together with the help of my brilliant followers on Instagram, Facebook and Twitter. And special thanks to Liz O’Riordan for fact/sense checking this list.

Please also take a look at the ABC Diagnosis red flag infographics which shows the red flags of secondary breast cancer.

Remember that there are two potential risks once you’ve had primary breast cancer: one is the risk of a local recurrence (developing primary breast cancer again with no spread to any organs) and one is the risk of secondary breast cancer which is the spread of cancer to other organs in the body. At the end of primary breast cancer treatment, it is a good time to discuss these risks with your surgeon, oncologist and/or breast care nurse.

Not all oncologists will discuss the risks and signs of developing secondary breast cancer with you when you finish primary breast cancer treatment.
So, if you want to know about this, you may have to raise the subject yourself. Remember that you may have been given a Breast Cancer Care/Breast Cancer Now resource pack (for those in the UK) at some point during your treatment which covers these topics. It might be worth digging that out and referring to it with your medical team.

Make sure you know whether you had lobular or ductal primary breast cancer because there are differences in the secondary breast cancer signs.

Here are some questions that you might like to ask:

  • What is the difference between a local recurrence of primary breast cancer and the development of secondary breast cancer? (Although I’ve covered this issue on this website and directed you to places for more information, it is always preferable to speak to your medical team when it comes to medical issues.)
  • What is my risk of developing secondary breast cancer? (It is entirely up to you whether you wish to ask this question. If you do ask the question, remember that it is just a guide and is not a definitive indication of whether you’ll have a recurrence or spread. So, think very carefully before you ask this question as to whether you wish to know the answer.)
  • How will I be monitored in the future? What monitoring will I have going forward, and what will I be monitored for? For example, will I have scans and if so, will they be checking for a local recurrence and/or secondary breast cancer? (It’s worth noting that most hospitals provide annual mammograms/physical checks to check for a local recurrence of primary breast cancer for a certain period of time, but it is unusual to have routine scans to check for the development of secondary breast cancer.)
  • Will appointments be made for me by the hospital, or do I need to get in touch with the hospital to make the appointments myself? (Make sure you make a note of when you should be having follow up scans and appointments so that you can contact the hospital if you don’t receive an appointment. It is important to keep on top of, and attend all follow up appointments.)
  • Does the hospital have a moving on pack with written information about the risks and signs of local recurrence and secondary breast cancer? (Some, but certainly not all, hospitals have written material that they provide to patients at this point in time – it is worth checking. There might be some helpful information in a pack that you are entitled to receive.)
  • Is there a moving on course for people who have finished primary breast cancer treatment that I could attend? (National cancer charities and local cancer support centres often put on moving forward courses for people who finish treatment for primary cancers. The topic of recurrence and advanced spread is often covered at these courses so it is worth seeing whether there is a course affiliated with your hospital. The courses are worth attending in any event as they provide a lot of support for the transition from treatment to post-treatment.)
  • Is there anything I can do to reduce the risk of a local recurrence or development of secondary breast cancer? (Your oncologist will hopefully be able to provide you with some advice about exercise and lifestyle.)
  • What are the signs of secondary breast cancer that I need to be aware of? (Remember that you can take the ABC Diagnosis infographics to your appointment to discuss with your oncologist. Jo Taylor – the creator of these infographics and founder of www.abcdiagnosis.co.uk – has told us that these infographics are being shared by NHS England with the Cancer Alliances across the UK and hopefully over time they will be used by many hospitals.)
  • What do I do if I have a symptom I’m worried about? Should I come and see you about a new symptom that I develop?
  • How do I know if a new symptom is serious, like a cough? How can I tell the difference between a pain that is a sign of secondary breast cancer and a pain that isn’t secondary breast cancer?
  • Who, and how, should I contact if I am worried about something? (Make sure you know who to contact and how to get contact in the event that you are worried about something. Get the name and number/email of who you can speak to. Sometimes this will be a breast care nurse, a Macmillan nurse or sometimes it will be your oncologist.)

Many thanks to Liz O’Riordan, (breast surgeon, co-author of best-selling ‘The Complete Guide to Breast Cancer: How to Feel Empowered and Take Control’ and speaker) for contributing to and checking this page.

The information and content provided on this page is intended for information and educational purposes only and is not intended to substitute for professional medical advice.

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