Jackie, NSW

A Not-So Patient Journey

 From Diagnosis to Treatment to Management

From what I understand, my journey to diagnosis reflects the frustrating paths of many others, but there’s a twist, or two. Early in 2012, I had an ultrasound for an unrelated medical condition (I have renal artery stenosis, due to fibromuscular dysplasia – basically, congenital, first diagnosed in 2003 and well-managed with medication). The ultrasounds are routine, but on this occasion, the radiographer identified a differential diagnosis of a desmoid tumour or a neuroendocrine tumour. What followed was a series of appointments with specialists, with varying degrees of interest (on their part) or satisfaction (on mine). One appointment had all the hallmarks of a really bad comedy sketch (if it wasn’t so serious), where I was the subject of a mistaken identity, and when it became apparent I was a patient, not someone coming to take his blood sample, the specialist quickly lost interest in me (or was preoccupied). The referral I was bearing rated barely a glance, similarly the diagnostic images. A desmoid tumour, was the declaration, then: “Any questions?” “Yes”, was my reply, “What if it’s not…” I then took it on myself to locate a specialist in soft tissue tumours and, following a consultation with my excellent GP, was referred to him. In answer to my question about whether there might be a test to indicate whether this was likely to be a desmoid or a neuroendocrine tumour, the answer was Yes – based on a measure of Chromogranin A levels. What a relief to encounter a professional who was smart, enquiring and prepared to listen to my concerns. Further testing, including a CT scan and multidisciplinary team deliberation followed, with a small bowel resection taking place soon after.

Throughout, my GP was a co-researcher, collaborator, purveyor of factual information and pillar of personal support. The twist: At some point, post-diagnosis, I attended a gynaecologist I had seen, back in 2009, when I had undergone a  bilateral oophorectomy. In this later visit, she pondered my referral and updated medical history, excused herself for a considerable period and recalled me into her room to apologise for what she now deemed ‘possibly unnecessary surgery back in 2009’. She indicated that an ultrasound at that time (the only imaging upon which the oophorectomy was advised) had, in hindsight, possibly indicated a neuroendocrine tumour. Crap! How do you respond to such a revelation while still trying to keep your polite face on?

Interestingly, I also received a letter of apology from another specialist for being so adamant in their misdiagnosis of a desmoid tumour.

A couple of notes on treatment and management: Surgery was brutal, but effective. Six weeks of recovery seemed massively insufficient – I was in pain, drained, bone weary, brain-fogged and impatient with well-wishers trying to cajole me to ‘get better quickly’. However, I did feel better in time, and needed no follow-up treatment, only routine scans and CgA tests (although experiencing tension prior to scans or the subsequent specialist visit is normal, for me). Five years on, the scans showed a lymph node increasing gradually in size. Whilst receiving reassurance from the surgeon, I felt there was a need for another point of view. Having transferred to a different specialist, treatment with monthly injections of Lanreotide was recommended – and this has been my treatment for a little more than two years now. Lanreotide side effects have their own interesting challenges. In my case, I immediately shed huge amounts of weight, due to fat malabsorption. Creon alone did not address the problem, and I also have a daily dose of Ezomeprazole, which enables me to tolerate food. I also pay close attention to diet – and I can recommend the Smoothie-led Recovery Plan! My system has adjusted fairly well to the Lanreotide injections, however I still do have occasional bowel issues and sometimes a day or so after an injection I am utterly ‘lie-down now’ fatigued. I have learned to adjust.

Experiences of the healthcare system

A couple of reflections:

Get a good GP – one who is competent, thorough, up-to-date, who shares reports, provides a copy to the patient, follows up on ‘extraneous’ issues, involves you as part of the ‘problem-solving process’ and all the better if they Bulk Bill!

Keep copies of EVERYTHING – referrals, reports, etc. Check them for errors (for example, incorrect spelling of a name can result in scans being unable to be shared across institutions – this happened to me). Incorrect notation of medication doses can become “gospel” that you have to argue over when unwell. Be prepared to laugh, or at least grimace, if a specialist medical report has killed off one of your very alive relatives! Ask for your GP to be cced in in specialist and pathology reports.

Prepare (or have your GP prepare) a Medical History – enormously handy at any point, but especially so if you find yourself admitted to a hospital Emergency Department, gasping in pain and unable to give coherent verbal responses to basic questions…

Use Telehealth to advantage. If you are really feeling like hell and can’t face public transport or a two-hour round trip and waiting room time, Telehealth is a godessend! (Let’s also make sure it remains past December 2021). Coupled with this – keep a list of questions to ask at appointments. One of the reasons I insist upon having a copy of the referral and/or pathology reports at my disposal is to know what to ask (or query terms I don’t understand). This also relates to rights and roles of patients. As patients, we need to be properly informed in order to make consultations collaborative, so that they don’t founder on the inevitable: “Do you have any questions?” (which may, sadly, have been known to double as: “You are now dismissed”). While medical professionals cop flak for sometimes being poor communicators, we also have a responsibility as patients to be informed (or to ask for explanations if we don’t know), to engage and to provide feedback for experiences of the good and not-so good.

Keep records of medications and when issued or changed. If possible, stick with one pharmacy for dispensing of prescription medications and ask them to register you AND your partner for the Pharmaceutical Benefits Scheme. You and your partner together achieve eligibility for cheaper prescription meds when you reach an annual threshold (currently about $1400 per CALENDAR year). It’s a little publicised and convoluted process and oh-so frustrating if you have to get your meds dispensed in multiple locations, but it can save you some cash. If you cannot stick with one pharmacy, and you are getting a LOT of expensive meds, ask the dispensing chemist for ‘stickers’ issued with each prescription and take these to your regular pharmacy to add to your total. If you have missed getting these stickers, you can still ask respective pharmacies to print you a PRF summary, listing all the meds they have issued to you, and if you are close to your annual threshold, the PRF summaries can be forwarded to the relevant Commonwealth Government department (with the relevant form – your regular pharmacy can advise and assist you – that advice is worth getting: there are multiple, similar-looking forms).

Keeping your own notes helps you to recall complex details after appointments. Some larger hospitals have Practice Nurses to check in with when you have specific queries between specialist appointments – very useful contacts to have, or….

Neuroendocrine Cancer Australia

Contact Neuroendocrine Cancer Australia – my Go-To Place for detailed, factual, accessible information about Neuroendocrine Cancer – and for information to pass on to family and to medical professionals. I have also requested assistance on one occasion from the NET Nurse and accessed online seminars. There are also online groups, which I have not participated in – although I have no doubt some would find this medium valuable. Information is also available about current research and trials and about Government responses to funding of neuroendocrine treatments, etc.

Further integration needed

Please can medical professionals just pony up and use My Health Record? Public hospitals are generally good at adding records, private consultants or practices are generally not so good at doing so. The result is that information cannot be shared or compared – a right pain when you have a scan at a private facility on one occasion and at a public hospital subsequently.

My GP adds critical information to my e-Health record with my consent. I just wish it was universal.

See the above point about the Pharmaceutical Benefits Scheme, which could be made MUCH more comprehensible, accessible and integrated.

Support when needed/empowerment

Apart from the tortuous process of arriving at a diagnosis, I feel that I have received appropriate support when needed, through the health system and from family and friends. Could there be more, and patient-centred support? Always. We should all strive for that, I reckon.

I want to add that I have steered away from online chat groups. I don’t personally find them useful, although others may. I have found Ronny Allan’s web page to be very informative and well-researched. And I do read relevant, referenced journal articles from time to time.

Who needs to do better?

Oh, wow. We all do, I guess, while acknowledging the amazing advances in educating patients and health professionals alike (including those promoted by Neuroendocrine Cancer Australia).

If I had wishes, it would be for medical professionals to be far more informed about Neuroendocrine Cancer so that patients in search of a diagnosis are not floundering around in what can seem to be an unresponsive system; so that patients can be correctly diagnosed in a more timely manner and receive earlier, appropriate treatment. It would also be that patients can be better engaged in the management of their diagnosis and treatment, that patient concerns are truly listened to and understood by medical professionals. It would be that a proposed treatment is not proposed solely through the prism of a particular specialist. It would be to recommend against complacency, as treatment, or simply, monitoring rolls on. It would be that ALL parties (including respective Governments, medical systems and affected patients) get better informed about Neuroendocrine Cancer so that wraparound services are readily available. Are they too many wishes? I hope not.


Patient Stories

Birgitte, South Australia

I have fully recovered from the surgery recovering and feeling terrific, and I hardly think about my NET. I am extremely grateful for the early diagnosis, that Australia invests in free bowel screening tests, and that we have excellent medical staff, facilities and treatments. I’m the happiest I have ever been in my life.

Doreen, Western Australia

Through attending NET meetings at FSH I was made more aware of NETS and found friendship and understanding from all who attended plus I had found a ‘home’ where others understood. 

David Lockwood

I have Neuroendocrine cancer. No one should feel alone and this is my #CancerKindness story.

Kristen Leknius

After almost 5 years of misdiagnoses, Kristen was diagnosed with NETs at only 43 years of age. Kristen’s initial diagnosis was grim, thankfully a second opinion and access to PRRT treatment successfully reduced her tumour and gave Kristen a second chance at life.