"My breast cancer diagnosis and treatment"

I was diagnosed with breast cancer in May 2018, aged 38.  My treatment and support has all been excellent.  I just have a few thoughts about how this could be improved - noted below:

• When breast cancer has been diagnosed – how accurately can you tell after the initial biopsy which Grade it is.  I was told it was ‘probably’ Grade 2, but it turned out to be Grade 3.  This seems to happen to a lot of young women, and contributes to uncertainty in the early days.  If you can’t accurately tell the Grade at the initial stage, perhaps don’t advise?  Or perhaps warn that if you are a young woman, then Grade 3 is likely?

• Also at the initial stage of breast cancer diagnosis, how obvious is it whether there is any lymph node involvement (from initial mammogram, ultrasound and biopsy at breast clinic)? I was told there didn’t appear to be lymph node involvement but there was.  Again this seems to be fairly common in young women.  If it’s not easy to tell, could you not just advise that you will look into this at the next stage?  Otherwise, as above you can feel even more concerned starting treatment that nothing is clear.

• During chemotherapy, could you ask patients if certain drugs are needed before dispensing them?  I am thinking particularly of anti-emetics.  I realised after my first treatment that I didn’t really need them, but was given them automatically after my next 2 treatments. Only by my 4th treatment did I remember to say I didn’t want them (my understanding is that once dispensed, even if they are returned unused they can’t be used)

• Some sort of a flowchart for treatment would be great – to include likely time period between surgery and chemotherapy and radiotherapy. And some advisory notes re timescales e.g. that your annual mammogram, and appointment with your surgeon will be on different days, and that bone infusions are not given on the same day you go to the clinic about this.  This would help enormously in planning your time.  Like many people I have attempted to go back to normal, which includes full-time work and looking after 2 young children.  But it has been really difficult with appointments and for example I’d booked a day’s leave for a clinic re my bone infusion, and only found out when I got there that I was seeing the nurse and the actual infusion is always on a different day. ( I would be happy to help with this)

• If you are on long term medication (e.g. exemestane) could you not be prescribed this for longer periods? I was only given a 30 day prescription so need to go to chemist every month (again difficult around full-time work and child-care).  When I was on the pill for example I’d get a 6 months prescription at a time which was much easier.