Treatment

Hello AuntieM, I am sorry to hear of your son’s recent spread, I’m on Pembrolizumab as well and have recently had news of a spread, in fact this is the 3rd time I have received such news (my story is in my profile which is accessed by clicking on my name). These are still strange times in hospital due to covid when all appointments changed to being by phone or video, on this last occasion they asked a nurse to phone me to tell me my scan results and bring my next appointment forward and that it would be face to face to discuss my treatment options and she stressed very strongly that I was not out of treatment options. I had that appointment on Wednesday. I know it’s horrible hearing bad news as you can go into shock and stop listening, and on the phone it’s harder for the professionals to tell if you are still engaging with them or not.

I think if you want to know how to complain to PALs the patient liaison service in the hospital the Macmillan support line 0808 808 0000 would be a good place to ring and talk through what actually happened and what the hospital has to change if anything for going forward.

I am trying with difficulty to get my head around why you think the oncologist missed something as it sounds like there has just been an unfortunate change from his previous scan to this last one, not the drs or radiologists fault but just the fault of nature. When scans are clear and no evidence of disease is seen unfortunately with melanoma and I suspect other cancers sometimes a piece to small for anything to see starts multiplying under certain circumstances. I had a break in treatment due to the lockdown period and when I said I could feel a lump returning  my oncologist asked for another scan and also a second opinion on the scan because of symptoms I described to her, the 2nd narrative had a query on my liver, the then arranged for an MRI to be done to get a better look and decided it was nothing of concern, so I’m pondering if at some point a second option was called for again not the fault of an oncologist but perhaps just how things work in the hospitals. 

You sound understandably shocked but you haven’t mentioned what further treatment plan your son has, as he only had Pembrolizumab are they considering Ipilumamab and is you son BRAF positive? that might make targeted therapy tablets an option. I do hope that you are able to support your son in his new treatment going forward.

May be I didn't explain properly. He saw the consultant on the 2nd September who informed him there was cancer in the chest on a lymfnode near to the heart. She said they were having a MDT meeting and she would call him on the 9th September with the treatment they would carry out. On the 9th she informed him there was not one but 3 cancers. That information is from the same scan Auntie M x

They have not spoken about treatment he has another appointment next week to find this out.

Hi AuntieM, 

Sorry to hear about your son's diagnosis.

I totally agree that such news should be given face to face, not over the phone. I would complain to the department and PALs regarding delivery of the news. Also would be good idea to request an explanation for what was said first and why it has changed regarding the spread.

From my experience, I know that for certain procedures NHS has double check system, meaning certain results are assessed by two different doctors to prevent missing a detail. It could be that after MDT they were certain that spread was in more than one area.

Hope you get some answers and have good news after the treatment.

X

The scan is made up of hundreds of 3D photos when it’s the chest abdomen and pelvis, and that’s why there is a specialist radiographer on the MDT multidisciplinary team to give a full report. I would not make a complaint that a specialist. Radiographer found more cancer than the oncologist. I however know if the MDT has not met to discuss my case then things can change when other members of the team get involved. 

Im getting the feeling that you are a very protective Mum and rightly so as a patient I would be disappointed that a different pair of eyes found more cancer but I would not raise a complaint. I might if I was told there was more cancer and I’d been worried sick and it turned out that there was none. It’s also annoying to have to wait a bit longer for a treatment plan but understandable in my eyes I’m afraid and it sounds like they are looking into it. Maybe I’m too laid back, or because I feel my team are dedicated and doing their best. I wonder what your son and daughter in law feel, are they disappointed but waiting for a plan and not thinking about complaining? I always think what I want the resolution to be for me and for anyone else put in the same situation as me and then decide if a complaint is required. I’m basing my laid back response on being an NHS patient I think if I was going private I’d perhaps have a different attitude. 

I hate my reply to you as the aim of the site is to be supportive, and I’m not sure you will feel my reply is. Shit happens in life, what someone does with that shit is the most important thing and in this case I feel they are still resolving things for your son and complaining in my opinion won’t resolve it any quicker.

Picking up on Elmyra’s point of getting info face to face is what would have happened prior to covid but is not possible in my hospital and many others I can imagine in these covid times. For instance I still have to have a covid test 4 days before every Pembro infusion and then isolate and this happens every 6 weeks as I’m extremely clinically vulnerable. So unfortunately at this moment in time I would not use that as a basis to complain. 

My son has that every 3 weeks and the consultant does see patients face to face 

Hi AuntieM

I wondered how you and your son were and if he's started on any further treatment for the new cancer that has been found?

x