Philippa’s Story

“Patience isn´t one of my strong points!  Throughout 2022 I had to learn to listen to the experts and listen to my body.  It was OK to rest and sleep in the daytime whilst also important to arrange for friends and family to visit and keep mentally active with games, reading etc.”

 

On Christmas day in 2021, Philippa found a small lump in her vulva and after being referred by her GP, was diagnosed with vulval mucosal melanoma, a rare form of melanoma. During January 2022 she had an initial operation to remove this and in March 2022 she had a single lymph node removal. Following on from this in May 2022 a PET scan revealed metastatic lymph node outside of the pelvis and Philippa started double immunotherapy treatment (ipilimumab+nivolumab). She underwent further surgeries and her latest scan shows she is cancer-free. Here, she very kindly shares her story:

I had been working in Spain for the last 5 years and had just taken early retirement in March 2021 and was super fit and enjoying life to the full. I had boundless energy despite my age, and it came as a complete shock when I found a small lump in my vulva and it was diagnosed as a vulval mucosal melanoma. Not only was I surprised, none of my friends or family could comprehend it either as I was so fit and didn’t feel or look ill.

“I was enjoying life far too much and was completely shocked at the diagnosis.”

 

After two operations I was hopeful the cancer had been caught, however in May 2022 I was told that it had spread from my groin area and the cancer was aggressive. This was probably the most difficult time emotionally – but at no point did I stop being determined to beat it. I have a husband and two children (25 and 24 years of age). I had also bought a horse and had him shipped back from Spain and was riding 5 x per week, playing golf and walking our dog daily. I was enjoying life far too much and was completely shocked at the diagnosis.

The side effects of the double immunotherapy were difficult as I seemed to get everything – the severe colitis and hepatitis being the most difficult to manage and made me the most poorly – especially as I needed twice weekly trips to the hospital ( a 2-hour drive or 1.5-hour train and taxi journey). This on top of my reduced immune system and covid was particularly challenging.

My tablet intake to try and control the various side effects went up to 26 tablets per day. I had to build a spreadsheet to know what tablets to take when over the course of the day. This continued for about 3 months before I could gradually reduce these.

I was told that due to the severe side effects, I could not have any more immunotherapy. I had also been previously told that chemotherapy and radiotherapy were not successful for my particular cancer. I remember feeling so angry and upset that I wasn´t allowed to have the treatment that had been successfully killing my cancerous cells simply due to the side effects. However, I also had complete trust in my oncologist, and she reassured me that the immunotherapy that I had already received would continue to work. This proved to be the case, as in December 2022 the cancer had receded to just being in my left groin lymph nodes. In December 2022 my surgeon removed all the lymph nodes and said the operation had been successful. Unfortunately, to remove all of the tumour he had to cut some of my sensory nerves which has resulted in reduced feeling in my left leg. However, this is a small price to pay as all the cancer was removed. I also suffered with post operation infections and a large seroma which took several weeks for the drainage to stop (to learn about Seroma, please visit our Melanoma Glossary). For some reason, my body seemed to react to the extreme to everything – the immunotherapy, the operations etc!

In January and February 2023, I continued to have issues with infections from the operation and was restricted to complete rest for a month and needed to stop all forms of exercise. However, from April 2023 I started to feel better and with the help of the physio & lymphoedema teams I gradually started to build up my strength and fitness and returned to riding my horse.

Since then, I have continued to build back my fitness and have 3 monthly scans – all of which have been clear. I am now only on one tablet a day for my thyroid.

My most recent scan in January 2024 is also clear and shows my seroma is almost completely resolved.

“I can only express my sincere thanks to my wonderful oncologist and the expertise of my surgeon, and to the numerous other consultants who treated me for the various side effects.”

 

I can only express my sincere thanks to my wonderful oncologist and the expertise of my surgeon, and to the numerous other consultants who treated me for the various side effects. Also, to the advancements in medicines and the double immunotherapy, that although made me very ill, killed the cancer when it was spreading quickly in my body. Finally, to the wonderful nurses who were both thoughtful and understanding.

Don’t underestimate the toll it takes on close family and friends but also openly accept the wonderful help and support they provide.

What advice would you give to other melanoma patients?

TRUST your oncologist and surgeons – even when it´s hard to comprehend the approach at the time. They have so much experience in treating melanoma.

ACCEPT the wonderful support and help from family and friends.  But don´t be surprised by some friends who “disappear”, who find it difficult to stay in touch when you´re going through your treatment.

SETBACKS HAPPEN but these don´t mean you can´t still pull through and stay on track. My numerous side effects and infections made life particularly challenging, plus the added impact of COVID, but keeping focussed on the end goal will help you through.

FOCUS ON KEEPING MENTALLY STRONG – I know this is sometimes easier said than done. Allow yourself to have some bad days but then put the negative thoughts away and focus on what gives you fun and pleasure whether that by family, travel or hobbies.

GRATITUDE and THANKS – to everyone, from the nurses, administrators, oncologists and surgeons. Also, to family and friends who supported me through this journey.

When I was going through my treatment, I wrote the following reflections and they still ring true to this day:

  1. Stay mentally strong
  2. Never give up – keep believing
  3. Surround yourself with wonderful family and friends
  4. Trust your medical experts even when things get tough
  5. Appreciate the simple things in life
  6. Keep focussed on the things you´re passionate about – dream about doing them when you´re well again.

 

With the “complete rest” instruction, I had to find different ways to fill my time without my usual exercising and outdoor activities. These included:

  • Luckily there was a lot of tennis on TV (French Open, Wimbledon etc) and watched some good series on Netflix to help pass the time.
  • Daily Sudoku, Wordle, Quordle & reading some good novels.
  • Family & friends – arranged for at least one to come and visit me most days so rarely had a day without a visit which helped break up the day. Just a one hour visit from a friend helped my mental wellbeing.
  • I rented a wheelchair from the Red Cross for a couple of months to enable me go outside with my dog and husband. My husband got an extra workout from pushing me about!!  Being outside stopped me going stir crazy and helped me stay mentally positive.
  • Country drives out with my husband to enjoy the countryside and get me out of the house.
  • Once I was allowed to start moving, I was set a programme by my physio. Initially, I was allowed some light arm exercises. Also walking up and down the stairs, one step at a time.
  • I started walking 5 minutes with my dog in my garden, then built up to 10-minute walks and each week added an extra 10 minutes to the walk until I could walk for at least 40 minutes.
  • As soon as I was able to, I drove to the stables to simple stroke and groom my horse. I dreamt about – and focussed on – the day when I could ride him again. Walking the dog built my strength and using the exercises from my physio I was able to sit on and walk my horse after only 3 months. I gradually built up the time on him until I was able to ride for an hour.
  • At this stage, I wanted to introduce golf back into my routine.  I started playing just a few holes of golf at a time and rented a buggy so I didn’t have to walk far. This gradually built up so that I could play 9 holes and then 18 holes with a buggy. Once I managed this, I moved to a few holes walking with my trolley and built up to 9 holes with my trolley.
  • Finally, I took part in the Cancer Research 10k steps a day which was a huge motivator, well supported by my friends and family resulting in raising a lot of funds for charity.

The road to physical recovery has been slow but am now back to all my original activities and have also taken up Pickleball.  Some reflections from the experience:

  • Take it slowly
  • Listen to surgeon and physio (even when they tell you what you don´t want to hear!)
  • Set personal and realistic goals – and agree these with your surgeon and/or physio
  • Listen to your body
  • Think of different ways to achieve your goal, ie rent a wheelchair, drives out in a car
  • Regular visits from friends and family are great motivators

After the amazing support and treatment I have had, I feel passionately about helping others. Those who have recently been diagnosed and are going through what I went through in early 2022 – I can empathise completely with what they´re going through. If I can help in any way, then I would like to. Whether this is mentoring or telling my story. Hopefully my positive story shows that there can be light at the end of the tunnel.