Hi all, I am recently diagnosed with a large oestrogen positive tumor, 20/1/23 they are saying its grade 2 and over 5 cms, is it normal to have only seen your consultant at the time of your diagnosis, my nurse for the last 2 weeks as been saying she will try and get me a appointment to discuss the findings, all information I have is very limited at the moment, I have been told by the nurse, that I need a mastectomy, she is saying that Consultant is saying no to reconstruction, I have not been given his reasoning for this, for the last 2 Fridays I have spent waiting for a call saying I need to go in and see my consultant, as alls I keep getting from the nurse is I will try to get you. To see him, I finally got an appointment with him, which was suppose to be today, this was cancelled yesterday by my nurse because consultant is not in clinic this week, although she was the one to make the appointment on Friday, when I first went I to breast clinic, I saw a different doctor who set the wheels in motion with the scans and biopsy, as the consultant was absent, he was available to give me my results, I haven’t seen him since,and my nurse as told me he will be absent for the whole of march, I was also told yesterday that he had put me on his surgery list, without discussing anything with me, the nurse doesn’t give out much information into the reasoning for his decision, and mainly just gives me leaflets and tells me to go on line and read up on it, nobody as explained what the surgery entails, none of the leaflets she has given me explains this or anything on why reconstruction can not be done, am I expecting too much is wanting someone to explain what needs to be done and why, sorry for the rant, I am just so confused with the lack of information
Morning jambed,
Rant away, you are certainly not expecting too much . You need to be given a plan of action and a timeframe so that you can start processing the information and plan your next steps .
my consultant gave me the biopsy results , told me that I would need a WLE and mammoplasty, followed by radiation. He said there was a small chance of chemo .
The breast care nurse then went over my pathology results with me , so I could understand them and went over the operation and gave me a rough timescale . I then saw her again. She gave me loads of leaflets , talked about the operation in more detail , gave me a post op bra that I would have to wear ect . I had her phone number for any further questions.
iwas then called for preop assessment, again by a nurse . I think your consultant should have told you what your plan was when you saw him for biopsy results .If you can not see him in person, what about phoning his secretary up for a telephone consultation?. I didn’t see my consultant again until the morning of the op .
good luck , you will feel better when you have a clear plan and a date xxx
Jambad sorry you find yourself on here, please go to your pals office at your trust with everything you’ve said below and ask them to look into this because you are not satisfied for want of a better word, I personally don’t think it’s acceptable you are being left in this situation by your team where you’ve not had discussions you should have had and the timings that you are being given by the nurse, you deserve better to be honest in my opinion and the pals office is the place that will investigate and get some answers for you. 
let us know how you get on 
Shi xx
Oh goodness - rant away!
I think you definately need to escalate this. You should be given a proper explanation and have the right to have the right to have this.
You deserve better so demand it. Appreciate NHS is overstretched and people overworked but you need to make sure you are looked after properly. Maybe get a friend or partner to support you in this process as you need your energy for your health.
Good luck!