Shining a light on – Anthony Nolan
Chiara DeBiase, Assistant Director of Patient Services
8th October 2019
Getting a diagnosis of a blood cancer or a blood disorder has a devastating effect on patients and their families. Every day, 104 people are told the news that they have a blood cancer. It is the UK’s third biggest cause of cancer deaths and kills more people than either breast or prostate cancers.
The symptoms of blood cancers and blood disorders are often confused by people as being related to other things such as being very tired or a bit run-down. It’s often only when things take a serious turn for the worse (e.g. someone becomes very short of breath or notices unusual lumps or strange unexplained bruises) that a new blood test reveals a more sinister diagnosis. The most important thing in these scenarios is that the GP works quickly to ensure a timely diagnosis in order to implement first-line treatment as soon as possible.
Thankfully, many blood cancers are treatable with treatment such as chemotherapy. However, there are some blood cancers and blood disorders that need ongoing treatment as well as possibly needing a stem cell or bone marrow transplant to offer someone the best chance of a cure.
For some patients a stem cell or bone marrow transplant is the only hope of a cure.
Once the tissue type of the patient is known, the first thing is that if they have any full genetic siblings, they are tested to see if they are a match. If that’s not the case, then the hospital will contact the Anthony Nolan register to search for an unrelated matching donor. Currently, only 60% of transplant recipients receive the best possible match, and this drops dramatically to 20% if you’re from a black, Asian or ethnic minority background.
After the transplant, patients need to spend a few weeks (usually 3-5 weeks) in hospital while they recover. This stay in hospital will be exceptionally difficult as the patients are kept in a single room in isolation; away from family, friends and their own children until their new immune system starts to recover and can tolerate being challenged by the infection risk from others.
Recovery after a transplant is a life-long balancing act of cautious awareness of when late complications may be occurring but also a vigilance from the GP about knowing when something is not related to transplant and can be managed in the community but more importantly and more frequently, knowing when to get the patient back into the transplant team to limit the impact of post-transplant complications.
The transplant centre will rarely discharge a patient from their care so the transplant related complications should always be managed long-term by that hospital. However, there are a number of issues, mainly secondary to Graft versus Host disease (GvHD), that these patient face that require a really open, positive relationship between primary care and this demographic of complex patients.
These issues include early menopause, management of skin problems, cataracts, maintaining good bone health, thyroid function, cardiorespiratory monitoring, management of anaemia and encouraging attendance at screening for secondary cancers. It is also important to know that these patients will need a full programme of revaccination for their new, naïve immune system as well as a proactive approach to psychological support for both them as recipients but also the family around them as the prevalence of psychological distress is very high after a transplant.
The Patient Services team at Anthony Nolan can provide your patients with information and support throughout their transplant journey. We also have a Lead Nurse who is always available to you for clinical support if you have a transplant recipient in your care.
Find out more here – https://www.anthonynolan.org/patients-and-families