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 2021wtf I had radiotherapy for my lung sarcoma, and CT results were showing shrinkage for a good 9 months after the radiotherapy treatment had stopped. Although the treatment has finished, the radiotherapy will be building up in the body now, so continues to work for some time.
I think it is always good to have another treatment on the back burner so to speak, so there are other options available if the cancer starts to grow again. Especially with the immunotherapy which is only offered once, and is often the last treatment offered.
Can you speak to your loved ones doctor, and say that nothing has been explained to you both, and you would like some clarity on the type of cancer etc.
