Breast cancer treatment woes

[Tryhardermum]

Hi, not sure if I’ve posted this properly, as I haven’t posted for many years. Anyway, to cut a long story short, I have breast cancer. The journey since diagnosis has been appalling and I’ve had to fight to be listened to and to get the right treatment. I have to say, the way I’ve been treated by the breast cancer unit has been more upsetting than the diagnosis! Suffice to say I’ve ruffled a few feathers. Anyway, I had to phone the hospital last week and in the background I heard the lead bc nurse say: ‘I couldn’t care less about [insert my name]. She should go private.’ I was so shocked that a Macmillan bc nurse, who heads the unit, could talk like this about someone with cancer. She is supposed to be my advocate but how can I trust her? I’ve emailed and phone the PALs team at the hospital but have had no response. I’m due to see her next week but don’t r want to. What should I do?

You need to keep that appointment, although I can understand why you don't want to.

That's awful, just a thought but could a good friend or partner go with you to the appointment as a support, silent if necessary?

Sadly @Tryhardermum any type of cancer treatment seems to be a bit of a lottery at the moment. I too have breast cancer for which I've had a lumpectomy and I'm currently undergoing chemo. I found that my dealings with breast care/treatment was fabulous but when I transferred to Oncology it all became a bit of a shit show with regards to organisation and information. For example last week's issue was that the district nurse broke my PICC Line (meaning I had to spend half a day in hospital getting it fixed and this week's shit show is that the oncologist failed to book next week's chemo and consultation.
In the General Health section is the 'Cancer Support' thread where there are loads of us (sadly) who have different cancers and are at different stages of diagnosis/treatment - I've found the advice/support from my fellow sufferers invaluable so come over and take a look. One thing I would say is that often the treatment that we receive is unreasonable but sometimes it just seems that way so come on over and tell us your experience and there are plenty of us who can give advice and support.

BestBefore and knotted fairies: Only my husband knows about the cancer and a friend who lives abroad. There are v good reasons for this. My husband has his own health problems and hasn’t got the stamina for a ‘fight’ with the hospital. Yes, I need to go to the appointment but the bc nurse has given me inaccurate info before, which has caused me a lot of distress, to say the very least.

Sorry to hear about your woes, Moth, and it was very kind of you to take the time to respond to my post and tell me about the cancer thread. I’ll head over there now.

Hey 💐,

I've have chronic bilateral Periductal Mastitis. I went to the Breast clinic last week, the nice guidelines are antibiotics & surgery. The consultant didn't like when I politely asked why the guidelines weren't being followed. I explained it affects my ability to have a relationship, work and I'm in pain 3 weeks every month without fail. As a CSA survivor it's traumatic going through it every month so adds an extra burden on my mental health.

She didn't want to answer my questions, wanted me to undergo an ultrasound and mamogram despite telling me before hand that surgery wouldn't be offered. Then when I went to walk out the chaperone tried to stop me leaving by blocking the door with her arm, which I assertively told her to move out of my way.

I've complained but as I worked at Healthwatch it's basically the NHS investigating themselves. So know it's probably futile.

Good luck 🤞