Sunday, 16 April 2017

Skin Cancer in Scleroderma Raynaud's, Rare Disease - Nicola Whitehill

A few weeks ago, I attended my local hospital to have a skin biopsy on the red lump which had developed on my forehead, over the course of the last three years. To have lived with a diffuse scleroderma diagnosis for nineteen years, and to have not had to have a skin biopsy, I know, is very lucky. I wrote about this experience here

I wrote more about the involvement of the skin in a scleroderma diagnosis  here

Being a long term diffuse scleroderma patient, I have, reluctantly, become resigned to the fact that, my daily reality is to manage my symptoms to an optimum level, in the hope to get through the day, with as much ease as possible. I detailed more about this here

Due to a diffuse scleroderma diagnosis bringing along a multitude of medical symptoms, crossing over into differing medical specialities, I try to prioritise and minimise my medical appointments, otherwise I would be attending a medical appointment every day! I detailed my annual check-up tests here

Andso, after procrastinating for three years, I finally ‘braved up’ and had the biopsy. The results of which, after ten days, concluded that an ‘Actinic Keratosis’ was the source of my red lump. I am scheduled to return to the skin clinic for treatment on this, the week before Christmas.

Actinic Keratosis is caused by sun damage and could develop into any kind of skin cancer, including a squamous cell carcinoma. I also have a patch of Bowen’s disease on my left leg, which is thought to have been caused by sun damage, also. I have cream to apply on the area – another task to add to the daily list for symptom control.

In 2012, a scientific medical paper entitled ‘Systemic sclerosis (scleroderma) and cancer risk: systematic review and meta-analysis of observational studies’ concluded ‘There is an increased risk on the association between scleroderma and cancer’. 

The results showed, 

‘The association is fairly specific, since lung cancer and, to lesser extent, haematopoietic cancers were significantly increased in scleroderma patients, while breast cancer, although suggested by previous epidemiological investigations, was not associated with scleroderma.’

The study highlighted several difficulties with its design, including the use of immunotherapies, as well as, information on scleroderma subtype and organ-specific involvements, could not be considered. 

A further difficulty included,

 ‘The time relationship between clinical onset of scleroderma and diagnosis of malignancy, a crucial issue to understand possible underlying mechanisms, has not always been reported, and several investigations also included cancer cases ascertained within the first year after the diagnosis of scleroderma, which were more likely to be concomitant than subsequent diseases, leading to potential overestimate of summary risk. However, the sensitivity analyses excluding the latter studies showed significant, albeit slightly lower, increased risks for all and specific cancer sites explored, anyway…...

The implications of this study are 2-fold. First, active surveillance of scleroderma patients for early detection of cancer is advisable and, with regard to the lung, specific guidelines would be welcomed to define modalities and timing of the screening with the benefit of a periodic CT scan of the lung, outweighing the risk posed by radiation. Secondly, alkylating agent should be used judiciously since they may predispose to cancer patients with an already fragile genome. Cyclophosphamide has been linked to increased risk of malignancy in patients with RA and systemic vasculitis.’

 To read the full article click here

On a personal note, although I am trying to not have a heavy heart due to another Christmas time being sabotaged by another Scleroderma ‘Added Extra’, I take huge comfort in knowing that Dr Tiberiu Bontea, my skincare medical team, are experts in their field. With plans to becoming a national skin centre of excellence in fruition, as featured in my local paper last week.

Living the dream, scleroderma style.

This article was written and published in November 2016 for my Column

To read my articles:

  • the importance of an early diagnosis click here 

  • the role of medical research click here

  • the importance of expert specialist centres click here

  • diet and nutrition click here

  • taking part in research trials click here

  • the UK guidelines for management and treatment of Scleroderma click here
  •      my skin is cured from scleroderma click here

Please DONATE to help fund medical research at the Scleroderma Unit at The Royal Free hospital where 100% of your donation will be used to fund vital medical research. Thank You.

 Living the dream, scleroderma style, hoping for a cure

#SclerodermaFreeWorld #RaynaudsFreeWorld
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April 2017.

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