Hydrocephalus: Have you ever considered the potential risk of radiation (i.e. Cancer) over time? What would your risk appetite be?

Hydrocephalus: Have you ever considered the potential risk of radiation (i.e. Cancer) over time? What would your risk appetite be?

Stupid question (partially)…I know! 

Like other X-ray imaging exams, CT scans expose you briefly to a small, targeted amount of ionizing radiation. The radiation helps create an image of structures inside your body. At the low doses of radiation, a CT scan uses, your risk of developing cancer from it is so small that it can’t be reliably measured. The potential benefits to your health, generally greatly outweigh any small potential risk from radiation.” 

https://www.mayoclinic.org/tests-procedures/ct-scan/expert-answers/ct-scans/faq-20057860

Is this something you would normally take into account?

I suppose it’s fair enough to say that most people generally don’t – me included, until now. There are so many of us with Hydrocephalus who depend on imaging, as this is what alerts Neurosurgical staff to the need for surgery or intervention. Swollen ventricles are a sign that something significant, needing attention, is happening inside our brain. We have no choice. The benefits are indisputable… 

So where does the risk come in?  

A few days ago, I consulted with an Endocrine surgeon to get a second opinion on the increase in size of the nodules around my Thyroid. The first surgeon, a few weeks back, brushed it aside and said there was no cause for concern as they weren’t significant in size, and refused to “touch it”. But, she welcomed me to seek a 2nd opinion – thankfully, I had two referrals from my GP, since we weren’t sure who would be able to offer the fastest appointment.

The 2nd surgeon gave me some food for thought and focused in on my Hydrocephalus and care till now, making it part of his train of thought, which was intriguing to watch/listen to. He acknowledged that I had a complex medical history (I thought; here we go again…). He then explained that he had worked in Neurosurgery for a while and was familiar with Hydrocephalus and wanted to know how it, and the subsequent brain surgeries, had affected me. (I found this curious). I told him that my short-term memory, processing and cognitive skills had been affected but that I work full-time and, on most days, can have a normal conversation like I was now, so I look fine even when I’m not. (I expected him to dismiss this, as so many others before him have but, he just nodded his head in agreement). 

He listened, drew pictures and gave me reason for pause (using words, which have become part of my professional vocabulary, and piqued my interest to say the least!). He said; “It’s likely that you are high risk, purely because of your Hydrocephalus but, more importantly, because of the number of imaging you would have had done, since your diagnosis. Based on that alone, I’m not able to ignore this and will need to look at further indicators. I’m not even going to think of asking you to quantify the number of scans you’ve had over the years, as I assume you would not be able to have kept count”. (This is true). Looking at him intently, I said; “No, I can’t and I have another one coming up on the 1st!

He explained that; Cancer grows slowly (over time) but the effects of exposure to enough radiation, could only present years later, affecting and changing cells in the body, and won’t necessarily be a problem at the time. And, because I’ve had so much imaging of my head, though not specifically in the region of my neck I.e. Thyroid, he wouldn’t rule it out as it’s close enough to have an effect. Regardless of my biopsies coming back benign last year, he explained that, when the biopsy is done, they only take a small portion of cells from a nodule, using a thin needle and don’t test the entire nodule. Also, not every nodule is checked and tested, therefore, if you were to have Cancer/suspicious cells, you’d normally find out when it’s progressed to a stage of affecting you in worse ways.  

Nodules are classified accordingly: 

  • TI-RADS 1 – Benign 
  • TI-RADS 2 – Not suspicious 
  • TI-RADS 3 – Mildly suspicious 
  • TI-RADS 4 – Moderately suspicious 
  • TI-RADS 5 – Highly suspicious 

My nodules are TIRADS-4, which will “require regular follow-up ultrasounds to monitor their progress, for the rest of my life“. Also, this is part of the “further indicators” I mentioned above. When I asked him if the biopsies coming back as benign last year was any indication of it not needing to be done again so soon, he said; “There’s no hard limit on how many times, or how often, these biopsies should or can be done”. (Something the first surgeon dismissed, as she didn’t think it necessary, given the result was benign a year ago!). 

I explained that I only wanted to know if there was potentially an issue, especially since I know that I have these nodules, they’ve increased in size and have a family history of Cancer. I’m not looking to have surgery to remove my Thyroid as that brings a host of other problems with it that I’m not up for. For peace of mind, he agreed it’s a good idea to repeat the biopsy, explained some options, and more about the ins and outs of a Thyroid gland. He’s not leaning towards surgery either. However, should the results or indicators change, the decision would be a no-brainer and there would be no need for further discussion.

So, another biopsy it is… 

He also strongly advised I follow-up on the duodenal lesion found last year. I done that today, and further investigations (again to rule out Cancer) have been scheduled for the 2nd of November.

Just as I resided myself to the fact of accepting that I’m not able to “fix” it, when it comes to Hydrocephalus, this pops up. Oh well! At least I have a surgeon who seems to have a better approach than most I’ve had to deal with and, for that, I am thankful. As for my risk appetite, that’s truly not something that could quantify a response, simply because imaging without a doubt, gives physicians an inside peek and guides their next steps.  

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

4 Comments

  • pjm19606

    October 21, 2020 at 8:47 pm Reply

    Being in my 60th year of hydrocephalus, any concerns about radiation are basically moot for me though, to date, no evidence of cancer from x-ray radiation has ever been found despite having had x-ray numbers reaching the thousand mark. In these modern times, I have been advised that the dozens of MRI’s and CT’s I have had are much less of a concern.

    • Skyewaters

      October 21, 2020 at 9:29 pm Reply

      It’s certainly given me something to think about going forward. Hopefully the effects aren’t positive🙏🏼

  • Cindy H

    October 21, 2020 at 6:07 pm Reply

    I ask for lead shield for my thyroid and body every time I get an X-Ray to verify my shunt settings. I am met with a variety of responses from the technicians from “Sure” to “why?”. There is a way for them/ us to calculate the the total amount of radiation we have received by counting the amount of CTs and X-rays we have had over a lifetime. Regardless, I do not believe that “norms” apply to everyone and each exposure is just that, an exposure to radiation. I am sorry to hear about your newest developments. Finding blame or cause for “our conditions” is not always a safe or productive road to travel, in my experience. I trust that your new surgeons will guide you through this process and address the issue in a timely and safe manner.

    • Skyewaters

      October 21, 2020 at 9:27 pm Reply

      Before now, I would never have thought to ask, nor did I know they could do that (use a leaf shield). I’ll ask with my next one and see how that goes. Seems like an obvious thing now that I’ve been made aware of it. Like most things we go through, it seems like the time they act, is when it’s too late😔
      Thanks for sharing💙

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