Every appointment brings more bad news

Originally, back in December, I was diagnosed with an early breast cancer, 22mm, no lymph nodes involved and hormone receptor positive. 9 months down the line, I've had 3 operations, weeks and weeks of waiting for pathology results and follow up appointments, 3 tumours found, plus my lymph nodes are involved. All that has been removed now and I was finally signed off for oncology to start their part. But then in a mdt meeting, the radiologist asked about the other area that was investigated. My surgeon didn't know anything about another area. Radiologist said it was identified in original scan in December! Surgeon said she'd already operated on me 3 times and this should have been mentioned before. I then had a biopsy and today found out that it is more invasive cancer and now need a mastectomy. I'm now about to begin chemo, followed by the mastectomy and then radiotherapy and endocrine therapy. 

Long story short...Instead of starting my chemo, I'm now waiting for a CT scan to check for secondaries. 

I'm 46 with a full time job and 3 kids. This is starting to take its toll on me now. This new area was identified 9 months ago, so this must be bigger now...it could have spread further. I'm terrified that I'm going to die.   I've lost faith in my team. Everything they've told me keeps changing. When I ring up, I'm told different info by different people. I feel like I'm being fobbed off because they know they've messed up. 

 How should I deal with this? Should I complain? 

Thank you 

  • Hello Bluesatsuma, I just wanted to say I’m so sorry you’re going through this and I hope you can get this resolved. I can see this is causing you a lot of stress. Hope you get the answers you need

  • Thank you. I just feel so alone. X

  • The hospital should have a Patient Advice and Liaison Service [PALS], and you want to contact them. Don't go directly to the treating doctors yet, because sometimes if there has been a mix up, an unacceptable delay etc etc, people can close ranks. Speak to pals, and take it from there. If you care has fallen below the expected duty of care, they will advise you. If you aren't satisfied with the answers you receive, you can take it higher. But your head will be a mess just now and dealing with enough stuff, without thinking 2 steps ahead.

  • Thank you. I have now contacted PALS to see if they can help. Nobody wants to speak bad of our wonderful NHS, but I feel that my case has been handled so badly that I am now in a worse situation because of it. It's really hard to deal with this as dealing with the cancer is hard enough. Thank you for your advice.