Phyllodes tumour: observations

Posting this for those who may be in my situation in the future. 
First comment: on being told I had a malignant Phyllodes tumour in my right breast I was also told it was not breast cancer which made be confused as to whether I actually had cancer or not. I had cancer in the breast but not breast cancer. This is not just about words. It’s about how I was made to feel and also how I was treated. 

Second comment. My consultant breast surgeon needed to speak to the sarcoma team at another hospital. This inevitably led to delays in getting back to me with a treatment plan 

Third comment. I had a lumpectomy in February but at no stage saw a breast care nurse or had any contact details other than a generic appointment phone number. My consultant has no secretary & without a breast care nurse I had no way of contacting anyone regarding next steps. So after the initial follow up appointment two weeks after surgery I waited a month until I was told I needed another procedure to get wider margins. It was not about waiting for the treatment but about waiting to hear what treatment would be  

Final comment: all NHS staff have been wonderful but the admin is woeful. Every one here knows how delays in communication are so stressful. I was not considered to be a breast cancer patient and so no support was offered. This forum has helped as has the extremely helpful Phyllodes Facebook group. 
I had my wider local excision today. 
To anyone in this situation in the future I would urge you from the outset to ask for contact details for someone who can offer support & help ensure follow up doesn’t fall between two teams 

I now wait to hear when and where my radiotherapy will start 

Wishing everyone here the very best in their journey.