Author Topic: Questions over referrals  (Read 5478 times)

Tillytasti

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  • Diagnosed: 12th October 2015
Questions over referrals
« on: November 22, 2015, 12:27:10 am »
Hi. I am new here. I was diagnosed with Amyloidosis early October after a biopsy on a breast lump. The breast clinic referred me to the Endocrinology department and arranged for a CT scan. This department, without having seen me, has now past me onto haematology and cancelled my scan. My next (first) appointment is in January. I have a few symptoms I am unsure of such as a sore tongue, sore neck, heart burn, pains in abdomen etc. Should I just wait for my next appointment patiently or should I be pushing for something sooner? Does this sound normal or should I be asking for something more specific?
Thanks :)

Miriam Vered

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Re: Questions over referrals
« Reply #1 on: November 23, 2015, 08:25:39 am »

Hi Tilly,
Welcome to the forum. Referral to a haematologist was appropriate and it would be best if you can arrange to be seen as soon as possible.
At the same time you should also now ask your doctors to refer you to the NAC. You don't need to wait till you've been seen by the haematologist. The waiting time for an NAC appointment is an average of 2/3 weeks. Please note that this is the time from when the referral letter is received at the NAC, not the date on the referral letter.
Information for referring doctors is available at:
https://www.ucl.ac.uk/amyloidosis/nac/info-phys




Tillytasti

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  • Posts: 2
  • Reason for joining: Patient
  • Diagnosed: 12th October 2015
Re: Questions over referrals
« Reply #2 on: November 25, 2015, 12:48:40 pm »
Thank you very much - that is extremely helpful. It is great to have a forum to ask these questions as even the doctor at the breast clinic who found the amyloidal lump said she didn't know anything about amyloidosis and to google it for more information. It doesn't give me confidence when even those referring me don't seem to know much about it.
I very much appreciate your quick and clear response.  :)

Miriam Vered

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Re: Questions over referrals
« Reply #3 on: November 26, 2015, 11:27:26 am »
I'm glad I could help. Unfortunately because amyloidosis is a rare disease, many doctors don't know much about it.
Also, bear in mind that if you Google amyloidosis, some of the information you find may be confusing and alarming. There are many different types of amyloidosis, each of which has different causes, different symptoms and different treatments.
Patients may become unnecessarily alarmed by reading information that may not apply to their own case at all. 
There is a lot of information in our NAC patient information site and in our patient information leaflets, but perhaps you should wait for a clearer diagnosis of what type of amyloidosis you have before looking at these.
Good luck and please be in touch if you have any more questions.