First oncology appointment

I am so sorry that this happened to you - it is not usual at all to not have time to ask questions. It must be friday afternoon, clinic running very late etc. It doesn't excuse it at all, but I suspect that is the reason. I found the breast care nurses really helpful if you have unanswered questions; you could phone them on monday to try to get some clarification. x

I am very sorry this happened to you. I was diagnosed with triple negative three weeks ago. 
first oncology appointment on Wednesday morning.

I am at Kings in London 

I am fearful of what they will say.

do you feel like sharing what happened?

thoughts with you 

Hi Esme, I am sorry to hear about your diagnosis. I don't think you will have the same problem. Firstly, I am in the West Midlands and secondly, I have spoken to a few people who say it was  unusual.  It was hard to put my finger on what wasn't right. The nurse was sitting behind us and printing things throughout. I don't think she introduced herself. When we asked,  she said she would show us the treatment area on the way out and she forgot and closed the door on us. We felt dismissed and we hadn't really had the chance to ask all our questions. 

I was really hoping for some dates to work to but she couldn't do that then and said she would call me on Monday. As a teacher that is not easy for me but I will have to work something out. 

The other thing here is that there is a four week wait for chemotherapy to start. 

Overall I didn't like the feel of the place but that could be me and certainly I think  a lot of it was the Friday afternoon thing. I guess they had had a long week. 

I will give them the benefit of the doubt and see how the phone call goes on Monday. 

Thanks 

1. I am so sorry.

That was not what you needed or deserved.

I wish better care for you from Monday.

do check in and say how the phone conversation goes. And know that you can say loudly what you need to happen.

my appointment is on Wednesday- I am not hoped.

What the doctor did do was talk me through the treatment plan, the different drugs they would use and the possible side effects etc. 

I have contacted a local charity who have already been back in touch so I think the support is there. 

Thank you for your kindness and I wish you well on Wednesday. 

I am glad that you have that information and that you have someone who can talk to you about it.

Thank you for your good wishes 

Hi Listmaker

Welcome to the forum and sorry to hear that you have been diagnosed with triple negative breast cancer.

Wishing you the best of luck with your treatment when it starts.

Best wishes 

Daisy53

My first experience was also frustrating. (Also TNBC). I felt like it was a production line, nothing personalised to me, where I was expected to consent. It wasn’t that I couldn’t ask questions, just that what came back was what I already knew. I think part of it was that I was struggling to accept chemo given the low apparent value I would derive from it, and the lack of interest they seemed to have in the long term effects from chemo. I was starting from the position that I didn’t want to be disabled by peripheral neuropathy for what was in a population of people with my characteristics an 8% survival benefit. 

I went back the following week and saw the head of oncology. Had I not got to see her that week I had decided to pay to see her privately anyway. I got a better meeting, with the outcome that I am having chemo. 

Do keep pressing until you have the answers you need. 

Why do you feel chemo makes only 8% difference if I can ask?

It is my only chance of survival,

Entering my details into NHS Predict Breast.  This is for adjuvant treatment post surgery. My age, my cancer type (TNBC), size (18mm) and grade (3), my node status (negative). It’s data estimates that 17 in 100 with my characteristics die in 5 years from recurrence within 5 years without chemo, but there 8 more survivors from having chemo plus bisphosphonates. 10 year and 15 year data is similar. So for every 100 women like me who accept adjuvant treatment, 8 survive who wouldn’t otherwise. Of the other 92, 9 will die of cancer despite the treatment, some will die of other causes, but most would have survived anyway without treatment. So 92 in 100 in my situation get no benefit and some are actively harmed.

I verified the data with the onco team.  It wasn’t an easy choice for me. It’s my understanding they recommend chemo if there is at least 5% benefit. In the end I went ahead because my tumour exhibited vascular invasion so microscopic cells could have lodged elsewhere through my bloodstream. No one can tell me my personal risk, just the generalised population data.