Posted by Its that time of year again. My annual Oncology meeting.
All abbreviations are explained at the foot of this article:
Where the majority of cancer patients are discharged after their 5 year remission period I am in a different category, As a Stage 4 Lymphoma survivor and having a Stem Cell Transplant I will be monitored for 10 years. It is a good approach but there remains an anxiety a few weeks prior to the meeting. My concern is not about a relapse nor the further intervention with chemotherapy etc but the financial cost that a relapse would cost me. In Ireland we have both a public health system called HSE and the option for Private Medical insurance. I have been covered by Private Health Insurance since a young age via a family plan, after turning 18 and commencing work I decide to take out my own policy and have maintained that over the years, even since becoming unemployed I have continued the payment, I feel it is vital especially due to the diagnosis in 2014, but even with Private Medical Insurance there are additional cost that are not covered. These cost since 2014 have totalled close to 25,000 Euro. The first couple of years I was working so the cost was achievable, but when I relapsed in 2017 I had taken out a 5 year loan for 20,000 which I finally paid back fully last year. Currently as I am unemployed I would not qualify for any loan, and even if I did qualify on a disability pension I would have serious difficulty repaying a loan. I was lucky enough to have made money from selling two homes over the past 4 years, the last house we sold part of the profit was used to pay off loans. A lot of European countries have set aside fundings for Critically Ill patients but Ireland is not one of them.
Our health service is good HSE and a recent initiative was the introduction of CDM Chronic Disease Management Programme. But it is basically up to the local GP to offer this service, luckily our GP clinic have taken on this initiative and both Anita and myself have been added to the program, but the CDM does not include cancer management at either of our levels. It is used to monitor diabitics, recurring infections and monitor for preventative test.
My first CDM was mid January 2025 and included blood test for diabitics called HbA1c, I also request my ESR and LHD to be tested. Within the list of questions and test
In my case the CDM does not cover Cancer recovery as this area is specialised to my Oncologist. But recurring chest infections, blood pressure, diabetes and long Covid recovery are. As I have the unfortunate pleasure of recurring kidney stones that can lead to UTI’s this is included
Test Done
Full blood test
ECG
Blood Pressure
Heart and lung test
Urine Test
A general welfare discussion
This CDM is the real future of prevention and early diagnosis but the big take away for me was the idea of open talk. This is allowing the patient to discuss worries or concerns. With so many Cancer organisations now promoting the idea of “open talk” I see this as a giant step for the HSE and how they interact with society.
The medical professional doing the CDM is a nurse not a doctor, so many patients I know find it much easier to discuss issues with Nurses as they come across as more open to talking and their questions feel concerning. The blood test results are delivered two weeks later by the Doctor. But other examinations such as the ECG and physical test are discussed during the CDM.
My GP gave me the results on the 27th Of January. My HbA1c was very high at 52mmol mormal levels are between 20 to 42 so this is a red flag. However the GP has asked that I relook at my diet over the next 6 months to try to control my blood levels and if it is not within range than medical intervention will be necessary, my oncologist will most likely decide on a different approach. Added to this my ESR test was at the highest since 2017 at 48mml/hr normal range 0 to 15mml. ESR alone is not enough to verify any Lymphoma recurrence as it needs to be supported by a LHD blood test. The sample taken was out of date range to complete the test. So prior to meeting my oncologist both of these test will be redone in the hospital the day prior to the meeting.
All abbreviations are explained at the foot of this article
Oncologist Appointment 6th February 2025
As against normal my Oncologist pre blood test is on the same day as my appointment. This was organised as I now reside 250klm away from the hospital and the LDH needs to be calculated on the day to get a clearer idea how the blood results translate.
I stayed overnight on the 5th with friends who lived next door to me before we moved a few years ago.
I have been anxious about this meeting for most of the week. The last blood test was concerning so the Oncologist will consider what to do today. As always I expect a very open discussion with my Oncologist and share how I have managed since our last meeting in 2024.
I have noted a substantial increase in the number of patients now posting on social media about their experience with cancer treatment and it is a breath of fresh air to see this “Open Talk” approach finally working. It is interesting to see how many victims have made comments that the real battle commences following the medical intervention, the majority point out that handling treatment is easier than what follows treatment both mentally and physically.
If you don’t understand someone’s situation:
* Don’t judge them or make assumptions
* Be curious, open-minded and open-hearted
* Ask questions to learn and grow
* If you are aware of the persons diagnosis and treatment try to Keep in mind that the person is still recovering from one or more of life’s main stressors. Its not about walking on eggshells as straight talk is always better than no talk.
The 14th of this month marks 11 years since first diagnosed in 2014 and hopefully my 7th year in full remission. It’s fantastic to be able to openly talk about this. And this April is even a bigger milestone for me when I commence my Patient Advocate role for the Lymphoma Coalition with the EHA.
The European Hematology Association (EHA) promotes excellence in patient care, research, and education in hematology.serve medical professionals, researchers, and scientists with an active interest in hematology. We are proud to be the largest Europe-based organization connecting hematologists worldwide to support career development and research, harmonize hematology education, and advocate for hematologists and hematology. “Towards prevention, cure, and quality of life for all patients with blood disorders”. This planned meeting in April will review guidelines for Oncologist and medical professionals for Diagnosis, treatment and recovery management in Hodgkins Lymphoma. As a patient Advocate my role will be to share what I have experienced over the past 11 years and help answer concerns raised by the EHA committee to benefit newly diagnosed patients. This is something that I will be discussing with my own Oncologist today.
Lymphoma Coalition Europe
All patients with lymphoma deserve optimal care. The objectives of the 2022 Lymphoma Care in Europe report are to:
1. Examine the burden of lymphoma (disease burden and economic impact) in Europe.
2. Spotlight the experience of patients with lymphoma and why this experience matters for healthcare decision-making.
3. Identify and make recommendations for future lymphoma advocacy initiatives in Europe.
Read the report to get the full recommendations and steps Lymphoma Coalition will take to address the following conclusions:
- The burden of lymphoma is high in terms of incidence, mortality and cost.
- Disparities exist in European patient experiences, with patients in countries with above average health expenditure generally reporting faster diagnoses, better communication with doctors and absence of barriers to care than patients in countries with lower-than- average health expenditure.
- Analysis of the 2020 GPS on Lymphoma & CLL showed that some issues transcend economic disparities and affect all patients. This includes:
i. Late diagnosis was experienced by patients in both groups
ii. Quality-of-life issues in both groups were similar, with fatigue, fear of cancer relapse and fear of cancer progression being the top physical and psychosocial issues for patients
Covid-19 pandemic has redefined the way medical care (and cancer care in particular) is given. It has also affected the functioning of some patient organisations by putting a strain on their finances, staff availability and overall sustainability. Patient organisations should continue to work with the rest of the lymphoma community to highlight and work towards resolving the issues that patients, their caregivers, and the organisations themselves face in relation to their care. https://lymphomacoalition.org/wp-content/uploads/Global-Health-Literacy-Report-Card-FINAL-Letter.pdf
Patient experience data is necessary to foster a patient-centred healthcare environment. All relevant evidence must be integrated to drive cost-effective health interventions, policy, and recommendations to achieve holistic care.
Back to the oncolgist meeting and the new blood test results….
I have mentioned a number of times throughout my articles that “ gut feelings “ always need to be listened to and my gut feeling about this appointment was spot on. My oncologist also cleared up a slight confusion that I considered LDH to be the primary indicator but it is actually the ESR.
Normal ESR is between 0 to 15, 3 weeks ago the read was 48 but today it was off the chart at 92, this is the highest it’s ever been my white cell count is also very high, these two readings indicate the I have an excessive level of inflammation (ESR) and my system is fighting an infection (High White Cell count). ESR basically indicates the level of inflammation in the body. I have two other medical conditions that can cause inflammation Diverticulitis and kidney stones. Unfortunately these readings can also point at Lymphoma.
I currently do not have any signs of diverticulitis and it can be very painful, so a physical examination was carried out and confirmed that I do not appear to currently have diverticulitis – pressing hard on the area close to where I get diverticulitis can be extremely painful but I had zero pain from the examination, my oncologist knows me well enough that when I say I don’t have that kinda pain he accepts it. I don’t feel I have a kidney stone either as these little buggers are extremely painful but that doesn’t mean that I have not passed one recently, passing a stone can cause damage to both the kidney and bladder which can cause UTI’s . So a NTAP CT Scan is been organised to check everything. I will get a call tomorrow with the appointment. But judging by the blood test it would be an extremely chronic UTI and I am not showing any other signs of a UTI
The hope is that this is just a chronic UTI which generally just needs a strong antibiotic to clear but the NTAP CT scan will be micro inspected to check all lymph nodes. I had a great discussion with the oncologist about managing issues that interfere with ESR, even if this is a UTI further blood test following antibiotics will be done to check ESR. The worst case scenario will be another Lymphoma attack but we have not discussed what or how they will attack a third Lymphoma attack with. That’s not quite an issue yet, I remain in remission pending the scan. Most likely if any changes f the lymph node’s are inflamed then they will do a PET Scan to get a mapping of this. The oncologist believes that this is not lymphoma but will only assure me after the scan.
What a day but let’s see what happens after the CT Scan…. Hopefully this roller coaster will stop, it would be great after 11 years to step away from it. The biggest gaps are between treatment and reporting, following the NTAP CT Scan I will have to wait for the results which my oncologist will push but ultimately this could take a week unless there is something that warrants the radiologist to call my medical team
Abbreviations explainations
CDM : HSE Chronic Disease Management Programme
The Structured Chronic Disease Management (CDM) Programme aims to prevent and manage patient chronic diseases using a population-approach. It helps you identify and manage GMS and GP visit card patients and HAA cardholders at risk of chronic disease or who have been diagnosed with one or more specified chronic diseases.
HBA1c (ifcc) blood test: The IFCC has recommended that “HbA1c” is the official test name for what has been in the past referred to as glycohaemoglobin, A1c and the unit for reporting HbA1c concentration is mmol/mol. The range of HbA1c values for people without diabetes will be 20 to 42 mmol/mol
ESR Blood Test Erythrocyte sedimentation rate; Sed rate; Sedimentation rate. ESR stands for erythrocyte sedimentation rate. It is commonly called a “sed rate.” It is a test that indirectly measures the level of certain proteins in the blood. This measurement correlates with the amount of inflammation in the body
LDH Blood Test An LDH (lactate dehydrogenase) test measures the amount of LDH in your blood or other body fluid to check for tissue damage. While it’s normal to have some LDH in your blood or body fluids, when tissues in your body experience damage or injury, they release excess LDH into your bloodstream or other body fluids
ECG An electrocardiogram is a simple test. It is used to check your heart’s rhythm and electrical activity. Sensors attached to the skin detect the electrical signals produced by your heart each time it beats
UTI A urinary tract infection is an infection in any part of the urinary system. The urinary system includes the kidneys, ureters, bladder and urethra. Most infections involve the lower urinary tract — the bladder and the urethra. Women are at greater risk of developing a UTI than are men
Hodgkin’s Lymphoma Awareness Ireland 