advice on how to fight the system needed!

HI,
I urgently need some advice on how to get the best out of the NHS system. Briefly, I was diagnosed early Dec with BC, had WLE 21st Dec, results mid Jan showed grade 2 , 2.2cm IDC heavily eostrogen ++, pr-, her2-. All lymph nodes clear. I registered on this site, did loads of my own research. Waited 8 weeks to see Onc(which seemed too long for me but kept being told there was a shortage in my area) and when I did meet him last week was told there was evidence of vascular invasion which meant chemo was not only desirable but necessary to avoid recurrence or spread.(wasn’t told that when results were read to me. am furious cos I would have asked for referral to a more knowledgable centre sooner) I hadn’t expected that. Having done my own research (maybe a bad thing) I had worked out that with clear lymph nodes the risks of chemo outweighed the risk of not.However,sitting here now with the knowledge I have, I don’t feel that, that is now an risk I’m prepared to take.
For a variety of reasons, past medical history, geographical isolation and living on my own,there is a consensus that I’m too unsupported to go through chemo here on my own, so, I’ve asked for a fast track referral to a more specialist hospital where I can be supported by family. GP said if I hadn’t heard by today to ring him on Monday and he would TRY and chase up referral. The problem I have is that I don’t really know how the system works and how I can make sure that within the system my case is being dealt with as a matter of urgency.I’m sitting here thinking I will fall beside the wayside cause I don’t know what to do next, other than have a complete nervous breakdown. Any advice on how I can help myself get fast tracked to a new place would be appreciated
Thanks
Trish

Hi Trish

Please do feel free to call our helpline team for advice on this, the line is open until 2pm today. Usual opening times are Mon-Fri 9am-5pm and Sat 9am-2pm.

Best wishes
Lucy

Hi Trish,

I was dx in Hampshire. I had recently moved to the West Mids to live with my boyfriend, but was still working in Hants. There was no question that I wanted to be in West Mids for treatment, but was concerned I would be losing time (I had grade 3 aggressive), but they did fast-track me, I guess I lost about a week at most, which didn’t seem bad. They handled this quite well, I did chase, and did this through my breast care nurse at Hants. Did you have a dedicated BCN, or team of BCN’s?? I would start with them, they should be able to find out progress and chase things on your behalf.
Good luck,
Shannon
x

Hi Trish
sorry you are having such a cr***y time, hope someone can give you some advice, sorry I have no idea : ( but just thought I’d say hi and thinking of you : )
love Alice

Hi Trish,

Sorry you’re having to go through all this extra worry.

I would ring your onc secretary and check the referral has been sent and then ring the hospital you’ve been referred to to check what is happening. I’ve always found the oncologists sec to be very helpful whenever I’ve had concerns. Frustrating as it can be we do have to be proactive to get things done sometimes.

When my onc referred me to the Marsden for a second opinion and they rang me with an appt within 4 days.

Good luck with your treatment.

Jackie x