New diagnosis and feeling confused and lost

Yes, you are entitled to have information in writing. The law requires reasonable adjustments to be made for people with disabilities. Get in touch with your BCN and ask for a further meeting, saying that beforehand you’d like info in writing so you can ask questions on what you know rather than what you might or might not have heard. 

Depending on the level of your hearing loss, you might find it helpful at future appointments to take notes then saying “so you’re telling me that…” or “did you say that…”. 

You should also ask that your hearing loss is recorded on your records. 

Good luck

Hi SnaraDub Am so sorry to read about your diagnosis. I also had DCIS and invasive tumours last October - it all feels very surreal in the beginning, like moving through water. 
At your appointment, were you assigned a key worker and / or given a number to call if you have questions or concerns? You should be able to call and ask the breast care nurse to talk you through everything - it is such a lot to take in. I used to take pen and paper with me to make notes and also write down all my questions before my appointments . They should be able to make adjustments for your hearing at all appointments too. 
I also received copies of the NHS letters which explain things too (and sometimes also led to more questions). 
You can also ring the MacMillan helpline for advice and to chat if you need to. 
I hope you are feeling ok - it gets easier once the diagnosis is confirmed and you have a treatment plan. In the meantime, sending a hug x 

Hi SnaraDub 

I’m sorry you have to be here, but welcome.

Your story sounds very similar to mine. Last year I had a 1.7cm IDC diagnosed and then following MRI another little blob was spotted a few centimetres from this. I had to go back for another biopsy, which came back clear, but there were some divided opinions on this. The surgeon’s plan was to remove this too but MDT didn’t agree this and an expert opinion was sought. Surgery was cancelled twice while all this took place. In the end I had a lumpectomy and only the main lump plus a few surprise little bits were removed. 

It’s really tough going through the further testing especially when you have to process the diagnosis itself. I feel so much for you right now as this was the worst part of everything by a long way. But, with hindsight I am glad that this all happened as it meant in the end I had the right surgery for me and best possible outcomes.

Please try and trust your team while they gather all the information they need to make the right plan for you. It takes time for things to sink in but I guarantee you’ll feel better when you know all the details and what is happening and when.  

Ask any questions you want and best of luck with everything. x 

Hi SnaraDub,  sorry about your diagnosis.  Another thing you can do is record the meetings on your phone.  Of course you need to ask permission first.  I know that in the meetings you forget half of what was said.  My husband always comes with me for mine, as he remembers things that I dont.  Good luck on your journey.

Lee x