Hi, my name is PIP. I was diagnosed with primary breast cancer in 2019. Left mastectomy with a number of lymph nodes removed. Was told I didn't require any further treatment! I thought, 'that was easy!'. My Macmillan care nurse was wonderful, she called at least once a week and helped me in many ways. July 2021, thought I had strained my right groin. It wasn't healing. Spoke to my GP who referred me to a physio, on line. Exercises made it worse. Queried cancer and was told no. 6 months of intense pain later I found a lump on my left chest. Sent directly to oncology. Full body scan. Told the cancer had spread and was in my permission, hops, lower spine, left leg, right arm and skull. You will know the state of my emotions. I had 5 sessions of radiation around my pelvis and was put on palbociclib and letrozole. Since then I have had 3 different oncologists, each one seems to want less interaction with me. The oncologists are not based at my local hospital but appear once a week and try to see as many patients as possible. Over the last year I have developed severe, life interfering eczema, ulceratve colitis and a pulmenory embolism. Given pills and potions but cannot get to speak to anyone about any of this. I have monthly blood tests followed by a call the next day with results. Scans every 3 months, followed by a call soon after. However, I have been told that this is now changing and I will only be contacted if there is a problem. I was horrified. Most of us know of scanxiety and the same with bloods (my neutrophils have come down to 1.00 which is just acceptable and I do have issues with some of my other bloods. I have explained how anxious this will make me, waiting around all day not knowing if they will call, worrying that there is an issue but that I've been overlooked, which has happened before. Not to mention that I have other appointments and am trying to have some sort of 'normal' life but that I will have to stay at home, worrying all day.
Can anyone tell me if this normal procedure with your results, I was going to say team but they really don't feel like my team - I feel like a nuisance to them. Regarding my scan results, it can take months before I get these and I do chase them up. I have even gone to the tray dept to find out where they were to be told they had been sent to oncology 2 weeks previously. Oncology really don't seem to give a damn about secondary patients and, without a care nurse, you have to fight individuals every day for your life.
Please don't tell me that this is normal. However, if anyone else has experienced treatment and lack of care like this, can you let me know how you dealt with it, please.
Sorry this is so long and rambling but I feel so stressed, angry and frustrated and I need to know, do I keep on fighting or is this just how it is.
Thank you to anyone that reads this 
Hi Pip/FlipFlop
I’m Anne, one of the Community Champions here on the Online Community and I'm sorry to read about all the problems you're having.
As you know from when you joined the breast cancer group a couple of years ago, the online community is divided into different support groups so I'm going to recommend that you now join the secondary breast cancer group which will give you the chance to find out how others are coping with communication with their hospital team.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
