I have to get this off my chest in a ‘safe’ forum as I was virtually sworn to secrecy until my oncologist has spoken to more patients but the b****r is leaving!! I took it with my usual equanimity, asked a few pertinent questions but the child in me is getting increasingly vocal in my head and I feel like I felt in primary school when my favourite teacher said she was leaving - betrayed and abandoned by someone I thought cared.
I took advantage of one fact that I was sure of when I got my diagnosis - Stage 4 patients are entitled to be treated by the oncologist of their choice for continuity of care - and I didn’t hesitate to insist that Dr X was my choice. I made it clear to him too so, if he notices my file on the wrong pile, he moves it. He is the only full-time breast cancer specialist, he is very interested in all the latest research and he’s proactive with regard to my MTNBC. He’s taken a personal interest from the start and has been honest with me about the confusion my cancer in causing - that the hospital hasn’t had a case like it while he’s been there (and it’s a huge regional centre).
The most important thing though is that he gets me. I’m an incredibly complex person riddled with anxieties and phobias and he has not once questioned me when I’ve said no, I can’t do that or I’m going to find that difficult - can you prescribe something (ie lorazepam) so I can get through it. He always takes this into account in any decisions he makes. He’s gentle, kind and considerate and he always makes my husband part of the process, including my husband’s complex emotions. If he needs to give us 40 minutes instead of 20, he does without a thought.
I know there will be other equally good oncologists. He’s not irreplaceable. The head of the team is great. There is only one I would emphatically not wish to work with. But I feel so sad that I’m losing this one advantage I thought I had in my treatment - someone who understood the person behind the cancer and who knows the two can’t be separated.
I had to laugh at clinic today, after pouring my heart out here. It was quiet chaos - one of the oncologists had been delayed and others were picking up her appointments and everything was being rejigged. After an hour of waiting, I went to the desk and enquired, to be told that I would be seeing… the one oncologist I wish not to work with. Her opening words were “I haven’t seen you for a long time.” Reply: “Yes, that was 2019 when you gave me the all-clear… and here I am again.”
To give her credit, she’d obviously read my case notes and looked at my scans and her news was reassuring, including “You HAVE been on capecitabine quite a long time,” like it’s some kind of miracle. But when I asked for some lorazepam to get me through my cystoscopy on Monday, that’s what I got: 2 measly tablets instead of a year’s supply of 28. What if I need a biopsy??
The greater irony was that, once I went off to see her, another woman in the waiting room was told she’d be seeing my oncologist. She refused and said she’d wait!! 5 minutes later I could have done a swap.
Anyway, good news: a tiny progression of the tumour (1mm in almost 4 months, compared to 2mm the previous scan) and markers level (though higher than they’d settled at for 16 months). I can;t be called Stable Mabel but maybe I qualify for Stay…May xx
My first visit was rushed affair, no time for questions, etc.
2nd meeting was a call, once again rushed, and told I need to take Tamoxifen, no discussion on side effects or if I wanted to take it.
Radiotherapy arranged and then changed from 10 sessions to 5, but nothing from oncologist until I chased him about it, to be told the radiologists nurses should have called me to discuss (me thinks not).
Called and emailed BCN and it took her two days to come back to me (yes I know they are busy), when she did call was told she doesn’t have any info, and her parting response was “now is there anything else I can help you with today” - not appreciated!
Radiology done, 3rd call - short and sweet (no how are you feeling, etc.) only am I now on Tamoxifen (said no as you said I need to have a gyn appoint to confirm I’m post-menopausal).
Gynae appointment had -confirmed I’m post-menopausal
Call arranged for last week, and I’m still waiting for that call (when I called to ask if he’s going to call, to be told oh he’s away at present), now waiting to hear when he’s going to call me to discuss which hormone therapy he will put me on.
So, question is how do you change oncologist on the NHS and is there any point at this point through my treatment.
Hello @cloudisland - after an awful appointment with an oncologist I simply said to my breast nurse “i don’t feel that she’s the right fit for me” & was moved.
(i had moved hospitals too so it was all quite the change / shock how different they all could be but think it’s so important)
Thank you sbee this is good to know and hope your treatment is going well? My problem is the BCN is also rather “distant”, but have been told I can speak to my GP and asked to be moved. xxx
I understand @cloudisland - I was also not a fan of my original breast nurse either (i promise I’m not a fuss pot!) so managed to distance myself from her too. Shame is that the latest one isn’t much better either…
Gosh sounds like we are both in the same boat. (I’m neither a fuss pot), but feel as it our lives they are playing with we should at least get some kind of goodish care.x
I’ve had surgery in November (Lumpectomy) and radiotherapy - so in a sense towards the end (thankfully), I think. I’m just waiting to hear what HT I need to take if the oncologist eventually comes back to me! That’s why I’m not sure if there is any point in changing BCN and oncologist. How much can they offer me after HT.
Oh that’s not great, at least you are at the end of the chemo (how has that been for you?). Surgery will be a walk in the park after chemo - ;o).
It was okay first time around, but as they didn’t take enough margin, I had to go back two weeks later - which was more painful and then had a infection which took ages to heal - but thankfully it did.