Scanxiety

Scanxiety as defined by www.RadiologyInfo.org

What is scanxiety?

Scanxiety is a word that combines the words scan and anxiety. Patients started talking about “scanxiety” about a decade ago. It has since become a common term, especially on social media. The term started with cancer patients and is now more widely used by anyone with a condition that requires regular exams. Patients often use this term to discuss the stress and worry that accompanies a radiology appointment.

There are many factors that can cause scanxiety and/or make it worse, including: 

• nervousness about the unknown aspects of the appointment (i.e., Where do I go? Will it hurt? Will I fit in the machine?)
• fear of hospitals or medical centers
• prior bad experience or poor outcome (“medical PTSD”)
• worries about what testing will show
• unclear communication from the healthcare team
• inability to understand the test results
• long waits for test results
• fear of how the results could change your life.

Not all patients experience scanxiety for all testing, but it is a common feeling for many. Patients can have scanxiety for any type of radiology test or procedure. It could happen for x-rays, CT scans, ultrasound, or MRIs, etc.

Scanxiety is an unwanted feeling that one patient described as “creeping into your mind whenever you have a scan coming up, and it doesn’t leave until you understand what is going on with your body.” It is an overwhelming feeling that, for some patients, is even accompanied by feelings of panic and/or depression. Additionally, a patient’s family and/or any caregivers can also feel scanxiety even if the patient themselves isn’t as bothered. 

Scanxiety” or scan-associated anxiety describes the distress before, during, or after a cancer-related scan and was a term first coined by a patient writing for the Time magazine in 2011. (NCBI https://pmc.ncbi.nlm.nih.gov/articles/PMC10000102/#:~:text=%E2%80%9CScanxiety%E2%80%9D%20or%20scan%2Dassociated,the%20Time%20magazine%20in%202011.%20%E2%80%A6 )

And I have to be honest here it becomes a battle within itself

In my case the Scanxiety did not really feel like the definition by Radiology Info, it was and remains closer to NCBI.

What I do find is that I become anxious shortly before scan and then the wait for the results.

For me it was not about “Fear” or “nervousness” and in my case I can understand test results (if I have any issues with medical definitions I tend to consult with Dr Google.

Procedures especially with chemotherapy take time, and with most therapies after completion the chemotherapy drugs need time to finish battling and flush through our system. With the completion of both A.B.V.D and The Stem Cell Transplant the result scan could only be completed 100 days after the last cycle of treatment. And then the wait for the consultant to verify the scan results, Nearly 4 months in total. No matter how positive a person is there is always room for doubt. This is where and why I talk about rollercoaster’s, the highs and the lows.   

When initially diagnosed all the test and scans seemed to be rushed, I was told on the day that I had my first biopsy that I had Lymphoma. That was 14^th Feb 2014. The diagnoses needed to be staged and that took 4 weeks. Basically with blood cancer the staging is mapped by a PET Scan. I had my PET Scan within 4 weeks and that was on a Friday – by the following Thursday I had commenced treatment.

In simple terms Stage IV (4) in Lymphoma is where the cancer cells have spread to vital organs. The diagnoses can also include other factors generally classed with A or B.

• night sweats
• itchy skin without swelling or rash
• fever
• fatigue
• unintended weight loss
• persistent cough
• pain in the lymph nodes after consuming alcohol

These are only 7 parts of how they determine the A or B. Having more than 5 of the above indicates B. I had 2 which meant A. So the actual classification was Stage 4 A Hodgkins Lymphoma L/L plus retina/throat.

The letters following the Staging like L/L points that the cancer cells had spread to both my liver and lungs – the plus is secondary organ which in my case was my right eye  and throat.

Please keep in mind I am describing Hodgkins Lymphoma here and other forms of cancer carry different staging usages, with lymphoma the main attack is on the lymph node system spreading to vital organs. With other forms of cancer it can mean spreading from a tumour site into the blood/lymph node system.

 However I don’t wish to build this article around “Staging” but it can take weeks due to blood cultures, MRI’s, CT Scan’s, biopsies etc. Beating Cancer takes time, it’s not just about the surgery, chemotherapy or radiotherapy – each treatment is a battle within itself. My battle has lasted 11 years with thankfully 8 years of remission.

However I don’t wish to build this article around “Staging” but it can take weeks due to blood cultures, MRI’s, CT Scan’s, biopsies etc. Beating Cancer takes time, it’s not just about the surgery, chemotherapy or radiotherapy – each treatment is a battle within itself. My battle has lasted 11 years with thankfully 8 years of remission.

Following my first diagnoses I commenced a form of Chemotherapy called A.B.V.D which took 6 months to complete but the last day of chemotherapy was where I felt the real battles commenced. I had to wait 100 days for my PET Scan to see if the chemotherapy had worked its magic. That’s a long time both physically and mentally. There are a substantial number of challenges facing cancer victims from first diagnoses to achieving remission, and those challenges are both mental and physical. At some point I will write an article on both of these but throughout all the posts on HLAI I have covered most of these.    

Scanxiety 2025

In January I had a blood test that set off alarm bells for my medical team. As research scientist continue to find ways to pinpoint forms of cancer by basic blood test we have not got there yet, currently there are blood markers that are used to determine if there are issues, in Lymphoma these are ESR, LDH and white blood cell counts. However these generally speaking show inflammation within the body which help doctors decide if further investigations are necessary. My markers with ESR, LDH and White blood cell counts prompted urgent investigations.

Unfortunately I have a few underlying medical issues that can cause blood markers to jump. Kidney Stones – first diagnosed in 1992 and Diverticulitis first diagnosed in 2008. Years before Lymphoma, Kidney stones are very reoccurring and I have yet to have a scan since 1992 where these little buggers have not appeared. I can form up to 30 stones a month, generally they pass without much notice but sometimes they can be large and get caught anywhere between the kidneys, ureters and bladder, requiring medical/surgical intervention. Stones can cut the ureters and create infections commonly called UTI’s. Diverticulitis is painful and takes time to clear up following an attack but this can be more controlled by diet, but Diverticulitis can create serious inflammatory issues mostly curable by antibiotics. So after a poor blood test doctors tend to call in a CT Scan to verify what’s happening. Following my meeting with my oncologist in Feb (a pre meeting blood test showed even more serious marker increase than January) he decided to book a CT Scan. This scan took weeks to organize and as murphy’s law would have it the oncologist was on holidays when the CT results were sent through. The CT results had a number of recommendations from the Radiologist – Yes there were kidney Stones present, surprise, but none of them were causing any obstructions, however my unitary tract system was clear but indicated possible infections, the  Diverticulitis appeared low and not an issue, but I had multiple swollen lymph nodes. It turned out that yes I had a UTI and a serious one as it appear to include e-coli. My GP issued antibiotics to clear this up followed by another test. The follow up blood test however showed that all markers were still high. So as I write this article I have had a 4 month wait and another 3 weeks before I see a specialist, pending on this meeting I will most likely undergo yet another CT Scan and hopefully a PET scan. But with everything considered it could be June before I get a more solid answer. That would be 6 months from initial blood alert to a full diagnoses.

Lets try that again 6 fucking months… 6 months of not knowing if I am in relapse or still in remission. Scanxiety at its best. To add to the symptoms over these months I have now had some serious issues with night sweats, something I did not have in 2014, but my old friend fatigue is back at play as well. From a staging point of view this would mean that if I relapse it would no longer be staged as Stage 4A but Stage 4B. But 4 months waiting is bad enough but another 2 months if not more before they can confirm a diagnosis is pushing it.

The  6 fucking months has created a serious mental health issue, the physical side is okay at the moment but the fatigue can really mess that up. I keep trying to find distractions to avoid deeply thinking about the “what if”.

The distractions include repairing the garage concrete floor (This is not a small garage. it is 20ft x 15ft and I have over 90% of the floor done, roughly 1,500kgs of cement mixed), gardening and updating the websites. These distractions help to push Scanxiety back. But not a day goes by where I don’t start considering a recurrence and the what if ?. My GP has been a big part of helping me, she has continued to monitor my UTI’s by having urine test do monthly, and last Thursday I got a call to say that I had yet another UTI as e-coli again, another antibiotic for 7 days. If the next test that is due this Friday comes back with a UTI I suspect the doctor will send me to hospital to have this investigated further and an IV based antibiotic. Thank the gods for the good weather over the past week. 

  And the websites.. this has really lifted me to be honest. For a number of years I have looked at various was to enhance our awareness site www.hlai.blog and over the past number of years and months I have read or discussed other cancer victims experiences. With my recent appointment as a Patient Advocate for the Lymphoma Coalition and their drive towards “Open Talk” I decided to approach and encourage victims to write about their own experience on our blog site. Both individuals have agreed to write for us and are currently working on their own unique writing skills to create awareness to their individual cancers, neither of these wonderfully people have lymphoma but they both intend showing how Cancer has effected them. It is a big leap for me to try and increase the overall Awareness to Cancer, I have to reset and prepare the websites for the additional topics and work from the authors. But this is all worth the time spent. I have watched both of these warriors battle cancer and they are inspirational in their attitude and their success in the battle against Cancer.

      The introduction will be linked from a new page called “Site Cancer Warriors 2025”. One of the most read and viewed articles that I have wrote about was the article based on a close friend of mine Terry Green and his battle against Stage 4 Sarcoma, in a recent conversation with a gentleman that I have known for over 25 years he felt that the article about Terry had a better emotional approach than my own clinical approach. To be very fair it is a great observation and one I had not considered. It is good to get feedback about the subjects that I pen, it really helps me to develop and/or change my writing approach.

Added to this I have been invited by the Lymphoma Coalition to the Community Advisory Board on Hodgkin Lymphoma – CAD with the first meeting in May. I automatically accept this invitation and look forward to becoming part of this group.

Scanxiety

Summing up this article and the question remains unanswered How does Scanxiety effect me ?

• From the above I feel it’s relays how anxious I am
• Waiting 3 to 6 months is extreme for any answers
• The waiting time is hitting my mental health
• Because of the similarities between tests and approach it feels like it did in 2016
• I have a symptoms that were not present in either of the previous attacks
• night sweats
• itchy skin without swelling or rash
• fatigue
• unintended weight loss
• persistent cough
• Trying to focus on long term planning is difficult as I am unsure what’s next for me
• As our finances drop it is becoming more difficult to put money aside for house projects
• And on the subject of finance all the upcoming consultant appoints are payable by cash only, these appoints are all private as I would have to wait even longer for a public appointment. Public appointments would also mean that I may not be seen by the main consultant.
• On the employment front I decided last month to hold back applications for a new job. It would be unprofessional to gain employment and then inform the employer that I maybe about to undergo treatment

 

One a final but important addition – Anita had a visit to her oncologist on the 25^th of March. She is now officially in 5 year remission from VIN Cancer and discharged to the care of our GP. In her own words

“On Tuesday I was officially discharged from my oncologist after my final 5 year check up on my hootenanny!!! Today I’ve been for a mammogram n had my wagammamas squeezed to the point of exploding! The point I’m trying to make is this:

Ladies, check your hootenanny’s n the slightest change, go n see your doctor. Get your regular smears and mammograms done. I know they’re medieval torture devices but it only takes a minute!!!!

Gentlemen, the slightest change in going to the toilet for a wee, as in going more often, ask your doctor for a PSA check for your prostate. It’s a simple blood test these days.

Life is short folks let’s prolong it while we can – love ya all xxx ”

Hopefully people out there can understand this as the language is blondish, I have become fluent in this after 25 years.  Translated into english. Anita is in remission after having her check up. Google have not included Blondish as a translator yet