I found out at the end of June that my platelets have been high for 3 1/2 years (490 at the last test). Urgent referral at beginning of July, delay because I was in hospital for three days, CT scan of abdomen, pelvis and chest on the 23rd of August.
I phoned the rapid referral service and they can’t give me a time frame for results because of staff shortages. Today is 24th day of waiting and I am beginning to struggle - I also caught a viral infection three weeks ago and my asthma has flared up badly alongside fatigue and pain, so much so that I have been off work for over two weeks.
How do you all cope with the waits?
Btw, there is a 31 rule for referral time to final results but it doesn’t seem worth the paper it’s written on - it’s been 70 days now for me.
Written by
mazeoffire
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Hi, Maze. Yes, it can be hard to wait, even causing more symptoms than the disease for some. Hopefully prayer or meditation will help ease your anxiety until you get more answers. It appears that you just learned about your issue and are having trouble getting an appointment with an MPN specialist or even a hemotologist and don't have a lot of information about MPNs. I was in a similar situation a few years ago, and it helped me when I learned that most cases develop over a long time, and medications are available to stabilize the condition an help with symptoms. To get the most help from this site, I encourage you to share your location, the type of doctor who is trying to help you, and your symptoms, diagnosis (when available), MPN medications, etc. This will allow the knowledgeable people on this site to give you more help and encouragement. I hope it helps and all the best to you!
It is truly appalling to be waiting that long for the results from your CT. This is well beyond the pale of what is considered minimally adequate medicine. It is time to file a formal complaint if you have not already done so. You need answers, not excuses. This is not a time to be tolerant.
Regarding the thrombocytosis, the good news is that you platelet numbers are relatively low, just barely over the diagnosis criteria of 450K. Provided that you do not have a history of thrombosis or hemorrhage, you may be relatively low risk for short-term issues. However, you definitely need to arrange to see a MPN Specialist, not a regular hematologist. MPNs are rare disorders and most doctor, including hematologists, have little experience with them. Here is a list. mpnforum.com/tsr-the-list/
It is important to understand that if you do have Essential Thrombocythemia, this is a chronic condition, not an acute illness in most cases. People with ET can expect to live a normal lifespan with ET when it is properly managed. While you will see that it is a form of blood cancer, many of us think of it as cancer with a little "c" not cancer with a big "C".
I was diagnosed with Et over 30 years ago. It progressed to PV 11 years ago. Now age 69, I am living a good life and plan to continue doing so. With my current treatment plan, I feel better now than I did 10 years ago.
While you are waiting, it is helpful to learn a bit more. Random Googling is likely to take you down some rabbit hole it is best not to dive into. It is best to rely on reliable sources like MPN Voice. Here are some links to resources that can be helpful.
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