I was diagnosed with essential thrombocythemia in April which meant that urgently needed and planned hip replacement surgery had to be put on hold. My treatment (with aspirin and hydroxycarbamide) went well and I was cleared for surgery by my haematologist. My (private) surgery was scheduled for 11 August but was cancelled by my surgeon yesterday as he was concerned about my blood/chemo status and was consulting their own haematologist. I got this from his secretary and am waiting in desperate, painful limbo for more information and some sort of plan.
Does anyone out there have experience of joint replacement surgery with Essential thrombocythemia (ET)? How did it go? Feeling very alone just now
Dear @Prudie - a huge welcome to our forum. I’m so glad that you’ve found us.
I’m very sorry to hear about your Essential thrombocythemia (ET) diagnosis and the knock-on effect this is having with other medical needs. It’s understandable that you feel in limbo as you wait for more information and a plan. It can be very overwhelming, but let me reassure that you are definitely not alone.
I have a different blood cancer, but hope that others in similar situations will share their experiences. Here is also a link to someone with Polycythaemia vera (Polycythaemia vera (PV)), another Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)), who had a knee replacement that you might find helpful - Knee Replacement
You can also contact one of our wonderful nurses over the phone or via email on 0808 2080 888 or via support@bloodcancer.org.uk if it would be helpful to talk things through.
Take good care and do let us know how you get on. We are all here for you.
I’m pleased to say that I had a useful conversation with my surgeon yesterday and now understand and accept the reasons for delaying my surgery, though I am desperate for it to be done. He explained that my risks of clots and bleeding are “through the roof” and he has discussed my case with the haematologist at the hospital (who happens to have a special interest in MPNs). He has recommended extreme caution in assessing the right length of time to stop the hydroxycarbamide before the surgery and the effect on my platelets. Evidently, the medication can cause the skin to break down, risking wound healing and deep infection, so care has to be taken with timing. Also, especially in someone recently diagnosed, coming off the hydroxycarbamide can cause a sudden large spike in the platelet count. It all means that the perioperative care has to be very carefully planned and calibrated for the individual patient. My surgeon assured me that I would be sorted out, but that we would have to proceed very carefully and the haematologist will be part of my team.
I am feeling much more positive, in spite of the pain and immobility, and think I may also get a new haematologist, more au fait with MPNs, out of this.
My own research since this happened suggests that there are no generally agreed protocols or guidance for managing perioperative care for those of us with a Myeloproliferative neoplasms (MPN) (the surgeon agreed with this) and such guidance as there is just recommends a multidisciplinary approach and great care. I feel I am now getting this. I’ll also offer myself to the new haematologist as a case study or a guinea pig, in case he’s interested!
I’ll keep posting as I go on this voyage of discovery.
Hi @Prudie - I’m so glad that you’ve had these conversations and are clearer on the whys and the plan going forward and are feeling more positive as a result. It’s not easy but this all helps.
Please do let us know how you get on. We are all thinking of you x