Skin Cancer and Other Skin Complications for People with Scleroderma

Nicola Whitehill avatar

by Nicola Whitehill |

Share this article:

Share article via email
skin cancer

Living the Dream Scleroderma Style

The skin is the largest organ in the body and is affected in most scleroderma patients.

At the time of my diffuse scleroderma diagnosis in 1997, I had extremely tight skin across my chest, arms, hands, face, legs — all over my body. My hands and fingers were puffy with painful joints and tight, itchy, shiny skin. I was unable to make a fist and could not remove bottle tops or jar lids, plus I had other symptoms like joint pain, gastrointestinal pain, lethargy, and fatigue. My Raynaud’s symptoms developed later.

I was given a 15-month prognosis at the time of my initial diagnosis due to the aggressive progression of the disease.

However, after seven years of chemotherapy and immunosuppressants (I am now 14 years cytotoxic medication-free), I remain in a state of elation after told by Prof. Chris Denton in November 2016 that my skin “is cured from scleroderma.”

Professor Chris Denton and me in September 2017. (Courtesy of Nicola Whitehill)

I have a daily symptom management routine that includes bathing and moisturizing my skin.

The Liverpool Echo once wrote about my daily baths. (Screenshot via their website)

For the bath, I use a liquid petroleum called Oilatum Plus. After towel drying, I put Hydromol Cream all over my body.

In the last five years or so, I have experienced several skin complications. Most recently, I attended another appointment for my “Bowen’s patch saga,” which opened the “Pandora’s box of scleroderma” at the start of 2018. At my initial referral appointment in January, Dr. Javier Bassas was most concerned that the patch could be melanoma skin cancer, advising me that it could kill me. I refused to undergo a skin biopsy due to the time of year, as winter is my nemesis season.

I commenced daily application of Efudix cream, a topical chemotherapy, until a week before my follow-up appointment in March. The Efudix cream caused my skin to inflame and break, causing pain and discomfort. However, those symptoms subsided after a few weeks. On the day of my follow-up appointment in March, the skin remained discolored but was now smooth.

Dr. Anthony Downs examined the discolored skin area on my knee and told me, “Your skin cancer has cleared.” I was stunned and overjoyed, and what’s more, there wasn’t a need for biopsy! I then showed Dr. Downs other skin spots for him to confirm as being sunspots. He also found actinic keratosis on my forehead.

Dr. Downs reminded me that the medications used to treat scleroderma heighten the risk of developing skin cancer when combined with sun damage.

During my recent follow-up appointment, Dr. Aamir Memon was concerned that the Bowen’s patch was now presenting as a basal cell carcinoma. The skin is now showing pink-brown patches. I have some new chemotherapy cream to try: imiquimod.

I know that I am a “lucky” scleroderma patient, in the sense that I have minimal internal organ damage and continue to survive, although my full-time job is to look after and respect my symptoms. I remind myself that my job today is to simply to get better, with hope and my canine diva dream team as my constant companions.

During my global patient profiles campaigns for Scleroderma Awareness Month in 2017 and 2018, every patient said Raynaud’s and digital ulcers were continual problems for them.

Other unmet clinical needs that patients have in common include:

This ulcer, which appeared in March, continues to show no sign of clearing. (Photo by Nicola Whitehill)

Telangiectasia prominent on my passport photo, taken September 2018. (Courtesy of Nicola Whitehill)

For optimal patient care, the following hallmarks preside:

I am honored to be a patient research ambassador with the National Institute for Health Research. Check out this video and my recent addition to their “hall of fame.” Medical research provides immense hope for a #SclerodermaFreeWorld.

Recently, I was appointed a patient public voice for specialized dermatology for the National Health Service England Clinical Reference Group. I am delighted about this role and I very much hope to be a valued voice. That position is in addition to my specialized rheumatology role for the same organization, plus my part in the Committee for Orphan Medicinal Products for the European Medicines Agency.

I’m living the dream, scleroderma style.


Facebook: Raynauds Scleroderma Awareness — Global Patients

Twitter: @SclerodermaRF and @RaynaudsRf

Google Plus: Raynauds scleroderma awareness global

Use the hashtags #SclerodermaFreeWorld and #RaynaudsFreeWorld.

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

One-hundred percent of raised funds will be used for medical research purposes only. Thank you.


Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.


P Shilpa avatar

P Shilpa

I am from India, a very ordinary and very poor middle class family . My sister is having Scleroderma which we have absolutely not aware of this Disease. She is now facing severe lungs problem and doctor is not given any proper answer of our question. we have too much confused about her recovery. She is now hardly 34 years old. We are not possible to loose her any how. But doctors are not openly giving any answer.
Kindly please give me your help that my sisters right lung is collapse badly ,she is now having breathing problem but from tubing try to remove water from her lungs,she is under observation and necessary tests are in continue, her all hands fingers are swelling and thickening and tight and her face also quite tight,please tell me that she have chances to alive and how much years more? She is willing to live a long because she have a little angel girl only 7 years old. kindly please help me and suggest that any charity we have get from any source in India for this terrible disease. please I am waiting for your reply .

Anastasija avatar


I was very worried about a mark on my body and your article relay eased my mind. Great article!


Leave a comment

Fill in the required fields to post. Your email address will not be published.