Immunotherapy queries

FormerMember
FormerMember
  • 1 reply
  • 38 subscribers
  • 665 views

I am worried sick and feel I don't know where to go.the problem is lung cancer patient has had radiotherapy and after months of waiting have been told good knees that it's shrunk.is it correct we should just wait now for 12 weeks to make sure it hasn't regrown or spread.i read up about immunotherapy and new stage 3 lung cancer durvalumab being recently approved by nice for NHS.when I asked the consultant he said we should wait as said above before trying or if radiotherapy is still shrinking it from last mid may appt it would waste the meds. Then I've since read some have radiotherapy with immunotherapy combined to really attack cancer. Since start of diagnosis the correspondents is terrible.apart from two letters to docs with CC and patient copy no info what so ever.one letter with cancer code no explanation as to any of it. So also when reading a help guide stating you can request your info in writing about cancer type and important info I sent e mail to another earlier consultants secretary asking for some written details was then told by secretary no one's asked this before then it was passed to a CNS that literally argued and said we had received all appropriate correspondents. It was such an aggressive call and I was gobsmacked when all I wanted was basic diagnoses info. Surely a letter to doctors and patient gets a copy isn't acceptable especially when cancer patient is elderly. I am in such an awkward situation as I want to know if there will be further treatment but truly feel the patient is being fobbed off. The saddest thing is the patient is so so grateful to the docs as she is so humble never asked or demanded anything in her life to have this vile bloody disease since new years eve diagnoses.also she feels if she asks for anything it may back fire if she rocks the boat. This person is my rock and noone comes close so I just need and want to know if she's getting the right care and treatment.we wasn't even told what cancer apart from lung cancer and the t3 code thing.i know covid etc hit hard but surely an electric email letter could be sent. Even more shocking when I asked about info from the top consultant he stated didn't we receive this letter he pulled up on screen that was sent march. When I neared his computer I noticed the code had changed completely to code something's so requested he print it off.was told no so I asked to take photo of screen only to be told oh no as it's not his letter to allow but our GP should have a copy. My hindsight now is he was looking at another patients file while it was our consultant appt. I truly am not a trouble maker by far but the thought of loosing anyone you love so much without trying your best to help in all aspects is soul destroying. So sorry it's in punctuated letter here but first time I've asked for help any feedback greatly needed .oh also I know legally I can request a subject access file but really don't want to shoot myself or patient in the foot by potentially annoying staff. Must add she had radiotherapy at different location to the bad experience staff before and could not praise them more.completely different experience in regards to appointments and correspondents up to date all upcoming events on paper for us no questions needed. In fact her last day of radiotherapy had the lead nurse myself and patient in tears where we felt so loved and cared for it was a shame radiotherapy ended. Truly the most beautiful people were lucky enough to have met.i will for sure sing and name the hospital once this incognito part hopefully is answered. Is anyone on durvalumab via NHS if so is there a criteria you had to meet prior to the medication

  • Hi and welcome to the community though sorry to hear about what you are going through.

    It can be hard to understand the decisions made and it might be helpful to discuss this with one of our advisers when you have the records to hand as they might be able to help explain some of the terms - I know with Janice sometime is seems like they write in shorthand.

    From your message it appeared that the radiotherapy helped to shrink the tumour, that seemed some good news.

    <<hugs>>

    Steve

    Community Champion Badge