Clinical Haematology hospital appointment

Hi Sarah19909dcd6a and welcome to this corner of the Community……. I am Mike and I help out around our blood cancer groups.

Uncertainty is such a challenge, but let’s look for you to get answers soon.

I don't have Essential thrombocythaemia (ET) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so I most definitely appreciate the challenges of this journey rather well.

At your appointment you will most likely be checked out along with lots of questions….. and a Heamatology appoint always means blood tests.

Make sure you have a basic time-line of your medical history/issues and a list of your symptoms written down…… only once all the parts of the jigsaw are put together will you actually know if this is more than ‘just’ Thrombocytosis.

Talking can help so you may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support or just a listening ear.

Always around if you need further help or just want to talk.

Hi 

Welcome to the group. 

please don’t hide how you feel as it’s important they know any symptoms / issues.

Dont worry about the appointment. It’s natural to have lots of questions so I would suggest writing them down ready for your appointment. 

i was diagnosed back in June 2016 aged 45 with Essential Thrombocythaemia JAK2+ve and I’m monitored quarterly. I ask to see the consultant once a year. 

My journey started when I was referred by my GP as I wanted to go on HRT but she told me my platelets had been elevated for 3 years, (dismissed by a male GP & told I was peri menopausal). 

you’ll probably need more advanced blood tests to determine if you have ET & /or another type of disorder. 
I had extra bloods done which took about 4 weeks for the results to come back. 

Following these results I was put on aspirin 75mg daily & folic acid as the consultant said this would keep things under control. My platelets fluctuated between 380 - 550 and because of my age they weren’t too worried. 
Anything over 1000 would be a concern & may need a different treatment regime but its only usually more of a risk in over 60s. 
It’s only in the last 6 months I’ve been given another drug to use by injection because my platelets went up (like an epi pen) and thankfully within 3 months they had dropped down to a normal level. 

My worst symptom is fatigue but I’m not sure if this is part of my menopause. 

MacMillan are fantastic for support but do Have a look at MPN Voice & leukaemia care websites as they have some very helpful links. 

im very lucky that we have a MacMillan centre next to the cancer care outpatient clinic and popped in to speak to them on Friday. The lovely volunteer put me at ease & has done a referral to our local council for the benefits team as I’m just working my notice. 

Once you know your diagnosis your employer is responsible for putting mechanisms in place to support you. 
Mike who answered below was very helpful with his advice on this as I had no idea & hadn’t disclosed my condition to my new employer. 

Hope this has helped you.