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
To view profiles and participate in discussions please or .
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 your 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.
There’s no doubt about it waiting is hard and wait times here in the UK are getting longer. The most re-assuring thing I was told was that although we’re talking about a cancer diagnosis, it isn’t a life limiting cancer in the way we think of these things. Many of us diagnosed with ET have few symptoms or side effects though obviously this forum is a great way to check in with others who do. Hope you get things resolved soon.
hello Mazeoffire, it is very frustrating when you are waiting for test results, and also a very anxious time. And I am sorry also to hear that you have been unwell with a flare up of your asthma. Hopefully you won't have to wait too much longer for the results. Have you also been referred to, or been seen by a haematologist to discuss your raised platelets?
Thank you for your kind replies. Meditation is definitely something I need to take up again. I also do a lot of crafting, which helps me to relax. I have done lots of googling, which hasn’t always been helpful. I have been referred to a general, non-specific symptoms rapid cancer service as in Scotland high platelets with unspecific symptoms (tiredness for me, but hardly suprising with fibromyalgia, Long Covid and being perimenopausal) is first and foremost a red flag for solid organ tumours (and they make for not very pleasant reading). I did a bit of reading on ET as well and it definitely seems less scary than lung cancer for example, which is one of the ones red-flagged because of my raised platelets. With the various chronic conditions I have ET doesn’t seem as scary as it might be for otherwise healthy people. I expect I will be referred to haematology if my CT scans are ok, otherwise I will press for a referral. I will also inform my MSP (Member of the Scottish Parliament) about the very long and stressful wait.
Just a quick update - received my CT scan results and there are no demonstrable signs of malignancy! It was a long 80 days wait. A few begning cysts and some mild degenerative changes in my spine (not surprising with hypermobility and kyphoscoliosis I think) and that’s all. The multidisciplinary team still have to review my case and I hope they’ll refer me to haematology, otherwise I’ll ask my GP, as there must be a reason for my raised platelets. Thanks again for your kind advice - it helped me to actively seek more relaxation and ditch the googling.
What wonderful news no matter how long it took. So glad it is positive and you are able to find ways to handle your situation without Mr. Googly. I find it to be good for definitions, correct spellings and getting consumer ratings on items I am considering buying. This MPN Voice and Health Unlocked sites are where you want to get research and experience updates. I do hope you get in contact with a hematologist or MPN specialist. The former may not be as informed about MPN but may be a good start if an MPN specialist is hard to find in your area or has a booked schedule. Stay safe!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I find it to be good for definitions, correct spellings and getting consumer ratings on items I am considering buying. This MPN Voice and Health Unlocked sites are where you want to get research and experience updates. I do hope you get in contact with a hematologist or MPN specialist. The former may not be as informed about MPN but may be a good start if an MPN specialist is hard to find in your area or has a booked schedule. Stay safe! 
Still waiting …
SCT Journey No. 7 post sct
Waiting
have you had trouble getting approved for stem cell transplant?
