Sunday, 16 April 2017

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

Skin Cancer 
Scleroderma Raynaud's, Autoimmune Rare Disease
 
 

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

And so, 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.



An edited version of this article was published here, in my Column with Scleroderma News. 
November 2016. 

To read my articles: 


Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here   

March Autoimmune Disease Awareness Month 2018, Click here   

Global patient video, Click here   

Becoming a Patient Research Ambassador for the NIHR, Click here  

If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here   


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here


Key Event Dates 2018, Click here     

Importance of an Early Diagnosis, Click here     

Taking Part in Clinical Research Trials, Click here    


The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here 

Expert Specialist Centres, Click here      

My Skin is Cured from Scleroderma, Click here      

UK Guidelines for Managing and Treating Scleroderma, Click here      

Fatigue, Click here      

Mobility, Click here    


Diet and nutrition, Click here     


Raynaud's, Click here    



World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here   


Why Global Collaboration is important to the Rare Disease Patient, Click here      



RARE DISEASE DAY:
The theme to this years Rare Disease Day is Research

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2016 Rare Disease Day Patient Voice
2016 Rare Disease UK Parliamentary Reception   


2017 Rare Disease Day Flashback  
  





Rare Disease Day is a fantastic opportunity for the entire rare disease community to shine a spotlight on their reality, combining as one unified voice. Where, at least one commonality presides –  
Medical Research provides the brightest light
for the illumination of the rare disease patients’ plight. 

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017. 

VIDEO



Although rare disease patients are few in number, eg. 2.5 million scleroderma patients worldwide, (the World Scleroderma Foundation), the commonalities and golden hallmark for each rare disease patient are the same: 

Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

Research is the key. Abstracts from 2016 World Congress, Click here


Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   

Preamble - here



The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre. 

Sept 2017


I am eternally grateful to the global scleroderma trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking the scleroderma enigma, is nothing other than, superhuman.
I am truly humbled and inspired by their work ethic. I am wholly appreciative for Prof Denton’s continued medical expertise and support, especially during my barrister qualifying years, 1997 - 2004. 

1st March 2004, I qualified as a self employed practising barrister. Further to having been told in 1997, by my diagnosing doctor, that I was looking at a 15month prognosis. 

I very much hope to utilise my professional skills and qualifications along with my patient experience, to help achieve the #SclerodermaFreeWorld dream, hoping to improve understanding and best practice, in the meantime.
  
For latest updates follow: 

Facebook Page:

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease  

Living the dream, scleroderma style.  


Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.  



100% of your monies will be used for medical research purposes only. No wages or admin costs. Thank You.
#HOPE 


 

Last Update: April 2018









1 comment:

  1. Actinic keratosis some of the time referred to as sun based keratosis or sun spots, is a pre- cancerous skin condition. There are numerous Actinic Keratosis Treatment options. After diagnosing your actinic keratosis, your specialist will consider these factors.

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