I’m new here - I had my appointment on 31.7.19 and was told I had invasive bc with cancer cells in my axial node. It is oestrogen receptive but my HER2 was inconclusive and is being re-tested. I’ve had a CT scan and am having a MRI mammogram next week. Once they have all the results they will give me a full diagnosis and treatment plan but they said I will need surgery and chemotherapy. I am a fairly positive person but my emotions are up and down and one minute I’m positive and the next in the depth of despair.
I called the breast care nurse today as I’ve had issues with x2 appointments for 14.8.19 being sent for the same day but at different times. She was so offhand and dismissive that I feel I don’t want to call anymore. My HER2 results are not back but my CT scan results are. She said that there were incidentals on it that would be discussed at the meeting next week. Is this good/bad? She also said my appointment might be cancelled as the consultant is not there that day meaning I still wouldn’t have a diagnosis or plan and probably have to wait another week at least. My mind is in overdrive trying to analyse everything and every little ache or pain I am now worrying about. I feel like a changed person already and nothing has really happened yet. The waiting game is so hard as I’m a planner by nature and like to know what’s next. Looking forward to chatting to you all xx
The not knowing and not being able to plan is the worst aspect of this pathway. Like you, I am a planner. I was recalled at the beginning of May from screening and it seemed to me that everything happened in two week blocks - had the core biopsies then a two week wait for MDT to discuss before I was seen. Then two weeks to surgery, two weeks to follow up etc etc. I get why it happens like that but the waiting and the not knowing and the way your mind works is incredibly distressing. I couldn’t plan anything but was told that once the treatment plan is in place it gets better. I have no words of advice really as like you I am fairly new to all this - I have an appt with oncology to discuss chemo on Monday. The community champions on here really helped me and the fact that you are not alone may also be helpful to you as people really do empathise. As a nurse (albeit just retired) I am sorry to hear that your BCN was offhand - it is extraordinary how, even when you know what the system is as I did, how incredibly sensitive you become to every nuance and I am sure she would not want you to feel that way. I must have been a total pain as I kept querying things that I knew the answer to but they were very patient with me. I am having despairing days at the moment as chemo is my worst nightmare but I know I have to have it. You are not alone. Keep strong. xx
Hi Cheekychops, sorry you find yourself here. Of course you feel up and down, you’ve had some pretty big news dropped on you. It’s going to take some time for you to accept your diagnosis but I promise you will laugh again. Try to not overthink the scan results as there can be lots of checking of things which appear abnormal but turn out to be nothing. I had an abnormality on my liver which turned out to be nothing sinister. None of us wanted chemo so I understand how you feel but it’s doable. I think the hardest thing is having your diary heavily committed with appointments for 6 months. I was locally advanced at diagnosis in March 2017, including 9/12 lymph nodes and still here and doing well. Here’s my story which you may find some comfort from: lifeafterlola.com/
Thank you so much for your replies. It is so good to speak with others who understand how you feel and to know there is support and advice when you need it. I had a lovely night out with my family last night and today I feel recharged and not as panicked as yesterday. Onwards and upwards. I need to accept that things won’t happen as quickly as I would like them to and that the journey may change along the way.
I have a big birthday in 2 weeks which is on hold and a holiday in September for our 30th wedding anniversary is probably going do be cancelled but as the nurse said when I was diagnosed I will have a big party to celebrate at the end of treatment.
I look forward to chatting more with you, reading your stories, blogs etc as it really does help xx