The first doctor told me it was eczema
Samantha Mitchell shares her experience living with cutaneous lymphoma, a rare and specific type of non-Hodgkin lymphoma (NHL) where the disease manifests predominantly in the skin.
The following are all Samantha’s words, shared with the Leukaemia Foundation to help raise awareness of blood cancer during September’s Blood Cancer Awareness Month 2019. You can share your story, too, by clicking here.
When were you diagnosed and how did this come about?
I was diagnosed with a type of skin (medical term ‘cutaneous’) lymphoma called Mycosis Fungoides in 2012 after having symptoms for approximately 2 years prior. I initially started with a lesion on the trunk of my body which slowly spread over time. Initially, I thought I was having a reaction to something so I started changing washing powders and anything else I thought may have contributed to it.
Mycosis Fungoides (MF) is the most common form of cutaneous T-cell lymphoma (CTCL). MF can look like other common skin condition like eczema or psoriasis and might be present for years or even decades because it is diagnosed, progressing over many years, often decades.
This process went on for about a year as it started off very small and slowly started to spread but I wasn’t too worried about it as it did not affect me in any other way. I had a career change and became a paramedic in 2011 and got married in 2012. It was then that I decided to see a doctor to see what could be causing it because at this stage the lesions started to appear on my arms and legs.
I went to a doctor who told me I had eczema, but I walked out of there saying it was wrong and I know my body – it wasn’t that. A couple of weeks later I went to another doctor and asked for a second opinion, telling him what the previous doctor has told me and that I had disagreed. He had a look and referred me to a specialist, a dermatologist which I had to wait eight months to see.
In November 2012, I went in to get my results after having a biopsy of a lesion. Feeling a little nervous but I wasn’t sure what as I’m an optimist. When I went in the specialist was typing away and looked at me and said I had Mycosis Fungoides (MF) then kept typing. After a minute he looked at me again and said do you know what that is and I said ‘no’, he replied with cancer and then kept typing.
Water starting to well in my eyes as I started to think the worst when he saw this, he passed me a box of tissues. He then wrote down the name of it and told me to go home and google it to find out about it.
He then told me that I would need to do phototherapy (use of ultraviolet light to treat skin, also referred to as UVB or UVA) and wanted to take photos of the lesions on my body for research.
How did you react to the diagnosis?
I was shocked as I did not expect that diagnosis at all and upset when I left as I wasn’t told anything about the diagnosis and was left to research it for myself. My husband was very surprised when I told him and speechless. Both my daughters were very young, only four and six years old so I did not tell them at that stage. It was only later in life, as I got older and started asking questions that I explained what I had.
What treatment did you receive?
After my diagnosis, I did phototherapy (UVB) three times a week at the hospital for three years with six monthly blood tests.
What/who has provided encouragement and inspiration to keep going on your journey with lymphoma?
Reading other people’s journeys of MF has helped me understand that there can be remission for a period of time and that it can be managed effectively. I have also found Cutaneous Lymphoma to be of help with information. The best information/education resource I have come across is a YouTube webinar by Cutaneous Lymphoma Org.
Where are you at now in terms of your illness?
After three years of UVB treatment and steroid creams, the lesions started to disappear, and I was only left with a few small ones. My family and I moved to Hervey Bay, Queensland and when we were there, I found that no one did phototherapy. I saw a specialist at Sunshine Coast who had phototherapy but the distance to get there was a round trip of six hours.
My specialist wrote a letter for me to purchase my own home UVB machine, so I purchased a hand-held machine as they are not cheap. I used this for a while until it got to the stage that I had so many and they were getting bigger that the hand held was not enough. So, I ended up purchasing a bigger one that was the size of a laptop. I am still using this now, but I find that it is not as effective as standing in a booth for the size my lesions.
My lesions then got infected and I was on antibiotics for a few months, at one stage they were so sore and moist from infection that I couldn’t even sit at work and had to kneel on the floor. My work pants would stick to my legs from the moisture of my infections.
After several courses of antibiotics and six weeks of three sessions per week of UVB and UVA, the lesions started to clear though I am still trying to clear several on the tops of my legs. Unfortunately, due to the distance of travel to have the UVA and UVB I could only take six weeks of three days a week off work and I am now only treating myself at home and driving once a fortnight to the specialist to get an extra power dose of UVB and UVA.
I have found the UVA to be really effective and has assisted with the lesions clearing quicker than if I had only used UVB.
How has your experience with lymphoma changed you?
Sometimes I feel selfish if I start to get frustrated with it all but then I think of others who are in a worse position and all things that have to go through then it puts everything back into perspective for me. I feel grateful for my health that I have now and think that it could have been worse.
What practical issues were the most difficult after your diagnosis, and how did you deal with these?
Finding the time during work hours to have treatment has been challenging as well as now not having anywhere close to use professional phototherapy. I manage this with using small home units which helps to a degree but definitely has not been as effective as a booth or having UVA regularly.
I have written a letter to the health minister in regard to having a phototherapy unit at the Hervey Bay Hospital as I have come across a lot of other people with eczema and other skin issues who would also benefit. I have not had a response as yet, but I will not give up trying.
Describe the support you have received and how it has helped?
My family have been very supportive, and my husband gives me a gentle push to continue using my phototherapy. There are times when I get tired of the constant treatment three times a week and just don’t want to do it.
Sometimes I have to have a break from it for a couple of months because it can really get to you. You have to schedule in the time to do it and it is a constant for the rest of your life.
Tell us about your favourite interests, hobbies and what you are passionate about?
I love keeping fit, I ran two half marathons this year and completed the 55km Oxfam Trail Walk in June this year. Prior to this I had only been walking and very short runs to keep fit. I have started mixed aerial which is trick on a hanging hoop and silk. This has been challenging to me but I’m loving it. My family and I often go camping as we love the outdoors and it really helps me to relax. I am passionate about helping people and motivating them to improve themselves and live life to their fullest.
What do you aspire to or hope to achieve in life?
I would love to help spread awareness of Cutaneous Lymphoma as it is a rare disease and I have found out not many people are aware of the disease.
I would love to share my experiences and help spread the word of educational resources to assist others who have the disease so they can gain more of an understanding. I have found that even experts in the field don’t have all the answers and the more that we can share the better.
Do you have any special advice for others who are struggling to cope with a diagnosis of blood cancer?
Take one day at a time and I have found gratitude, I am thankful for everything I have right now.