There’s a diagnosis of…. ah, not so fast!

When it’s rocking horse pooh, everybody thinks twice before committing. And rightly so. 

After I arrived at the PeterMac, Melbourne, almost eighteen months ago now, things were all reviewed…. again. Bloods, biopsies …. the whole shooting match. 

Once more we were on tenterhooks. Another clinic visit and, after a long discussion, with only a refreshingly brief reference to a computer screen, these words… “Yes, you have Sézary Syndrome”. 

To have a long questioned diagnosis confirmed, even as it was, a second time, is significant. To live with doubt is a highly stressful circumstance. It matters little how strong inward convictions might be, until the words are spoken, it simply isn’t so!

This experience was in marked contrast to that of a fellow clinician with cancer, Liz O’Riordan. Liz is a breast surgeon with breast cancer. She blogs here and has recently contributed eloquently to a Doctor Paradox podcast

Liz describes being invited to view a mammogram, her mammogram, and knowing…. knowing that she had cancer… knowing how the next years of her life were likely to unfold. This is an exquisitely arresting image. In a moment, to understand.. completely understand, that life would be changed irrevocably. 

That Liz has committed to documenting her own ‘new normal’… to expose us all to the very special insights that she can, and does offer, is simply inspiring. 

So it was, that unlike the circumstances for Liz, there was conjecture regarding a first move for me. 

There aren’t established best practice frameworks, or clinical guidelines for the management of seldom seen diseases. That is just the way it is, and, indeed, to expect it to be otherwise is completely unrealistic. 

What does exist however are international networks of clinicians willing to share their experience of the application of different treatment modalities, in realtime and in print. To my ongoing good fortune, a preeminent clinician, researcher and author in the field of cutaneous t-cell lymphoma treatment is in Australia. 

Based on what he made of the staging of my disease, Miles Prince recommended an initial attempt to achieve remission with the monoclonal antibody, Alemtuzumab. 

At the outset it was made plain that a treatment constraint was always going to be access to certain existing therapies not available in Australia. But this was tempered by an understanding that new, innovative, potentially successful treatments are constantly evolving. 

Alemtuzumab, despite its early promise, was not to be the agent to achieve a lasting remission. Some ten weeks from the end of three months of therapy, skin signs and symptoms returned. 

As a clinician I have always welcomed treatment options. As a patient it was no less the case. Suggested as “next line”, was Interferon. 

Who in medicine is not aware of the existence of this agent? A product of the search for immune system modulators, first described in 1957, it has become a frequently used treatment in multiple disease settings. 

How many of us though, are aware of the ability of Interferon to influence more than just the immune system? How many recognise that, beyond its systemic effects, it is capable of wreaking havoc with an individual’s mental state?  

Already rendered compromised by the presence of malignancy, Interferon’s effects on mood and sense of well being are as if a “test” of resilience. 

Or are they? 

For me, this circumstance was more than a challenge of my mental state. It challenged my sense of being. It truly robbed me of my place in the world. 

I resolved that I would seek out an alternative treatment. 

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