Hi, apologies if this is in the wrong forum etc but I was just hoping someone may be able to help.
My sister has been unwell for some time. She first saw her GP over a year and a half ago, originally regarding stomach and heart issues. After a few tests they also found inflammation in the duodenum I think and her long journey started. As well as the pre mentioned issues she has been losing an incredible amount of weight, feels full after only a little food, numerous stomach and skin issues and blood test results all over the place with I believe high red blood cells as one abnormality amongst others.
After speaking with her yesterday she is now experiencing drenching night sweats. She has had an endoscopy and stomach ultrasound which haven’t found any reasons for the inflammation but her liver test results are abnormal. Her haematologist suggested last year that they wanted to rule out Leukaemia, which they seemingly did originally, but now seem to be trying to test for another blood cancer of which I am not familiar with any names. It’s just taken them 5 weeks to send a form through for more blood tests and one set of bloods has to go to London.
Thing is all conversations with her haematologist have been over the phone and it’s only now they have booked her in for a face to face appointment but this isn’t until the end of November. Therefore I come belatedly to my question. Should it really take this long on the potential blood cancer path? It’s March 2023 all this started in earnest and I really don’t know how my sister is coping with it all. If it’s skin, bowel or some other red flag concern you tend to get onto the two week pathway so I am at a loss as to why she is over a year and a half on and still without any answers. I obviously can’t get involved but I was just wondering if this was an acceptable time frame or is it a tricky path to a definitive diagnosis? Thank you.,
Hi @Max68 and welcome to our forum and it sounds that you really care for your sister very much and your concern really comes over in your post.
It sounds as if your sister has complex medical conditions and symptoms.
It sounds as if your sister’s doctor and now her haematologist are working to try and find reasons for her symptoms.
Perhaps talk to your sister and see how she feels about the amount of time she feels she is waiting and she could always tell her GP of any new symptoms she might have and ask for an earlier appointment. The new symptoms might or might not be connected.
We are such complex beings.
Hospitals have PALS departments (Patient Advice and Liaison Service) and she might to want to approach them.
It is so difficult for you when you obviously want the best for your sister and are so powerless.
Please do keep posting as we are here for you, I find that this is a place where I can really say how it is to be me.
Take lots of special care of yourselves
Thank you so much for your reply. Yes have spoken with her about PALS and have nagged her (nicely) to get back in touch with her GP about the new onset night sweats, but obviously I don’t want to push her too much as it’s up to her, not me. She has read about a particular blood cancer (name escapes me) and feels that her symptoms are extremely similar, but I’m the last person to lecture anyone on not using Dr Google!! I know she was frustrated about waiting 5 weeks for a new blood test referral and then apparently these special bloods that go up to London take a long time so I suspect there is no point in the haematology face to face until they have all the results but it just seems ridiculous that the earliest appt is end of November. But I do see many a post on here where people seem to be in same boat with long waits. Just a shame the onus seems to be on the patient to chase.
Thanks so much @Max68 yes, it is so difficult when you know what you you would do in a situation, but unfortunately specialised bloods sent elsewhere I believe do take time and you are right getting face to face appointments (and after these specialised test results are returned) still take time.
I saw a consultant for another condition recently and his face to face appointments are booked up for 18 mths.
You are right the onus is on the patient to chase often.
The best gift you can give your sister is being there for her, which you seem to be doing, brilliantly
Please do keep posting how things are going for you both