Derek is in his 50’s and shares his experience
1. When and how did you get diagnosed?
In late summer 2006 I saw an ENT Consultant at my local hospital (Queen Alexandra in Cosham) over Ménière’s attacks. He sent me for an MRI scan and from the results I was admitted to Southampton General on Oct 2nd 2006 for a brain tumour to be removed and a VP (ventriculoperitoneal) shunt to be installed.
2. What symptoms led to Cowdens being diagnosed?
I have always had a large skull but I was diagnosed with Cowdens after my cerebellar brain tumour had been sent for tests.
3. What impact did the diagnosis have
At first I didn’t fully accept it but we decided against any more children to be safe, as initially I felt guilty of passing it to my son. Over the years since I just try to keep an open mind.
4. Have I explained the side effects of Cowdens to family members?
I was in some ways lucky. While I was in Southampton General I was visited by Dr Katherine Lachlan who informed me about Cowdens and shortly afterwards my wife arrived, so we both got told and understood things better. My son, who was 18 months, also got diagnosed a few weeks later.
5. What implications has it had on your family?
It is hard to say, as my Dad had passed away before my diagnosis of Cowdens, so we are not sure if he had it. In the future though, our hardest task is getting my 12 year old son to understand about it.
6. Where do you go for more information?
I generally get my information at Hospital appointments but feel my GPs don’t fully understand it and recently have been trying to get a Dermatologist appointment over skin tabs (got over 30) but this has been declined as not urgent sadly, I have found looking at other peoples stories over Cowdens very useful
7. What about people who are looking for a diagnosis?
Don’t give up hope, and I would advise they join PTEN / Cowden groups.
8. What has been the affect on your children?
This summer we have started to inform my son he has Cowdens, and it was hard. He doesn’t know the full risk yet but we will make sure he understands about it and doesn’t worry, especially as it may be hereditary.
9. Do you have any tips for caregivers?
Not really, but it is strange when I have to inform the hospital Doctors and Nurses about Cowdens
10. What are your current symptoms?
Apart from skin tabs, I have yearly colonoscopys / endoscopy / ultrasounds for my thyroid, and follow up appointments. On Oct 9th I had an ultrasound for my thyroid with doctors in attendance. They have found something and will inform the consultant about what treatment may be needed at my follow up appointment in mid-November.
11. How did you find a doctor?
My tumour was removed in Southampton General next to the Princess Anne hospital where the Genetic team are situated and I have been seen by Dr Lachlan regularly since 2006.
12. What has been your experience of the NHS healthcare and professionals?
I have nothing but praise for the way things have developed, as if my tumour had not been found I would not be involved in PTENUKI. I do still find some doctors who have never heard of Cowdens though.
13. Has Cowdens affected me getting Health Insurance?
Not yet thankfully.
14. What are your plans for the future?
My future plans are to take things one day at a time. This is because ever since my tumour operation in 2006 I have had bad health. They have included blood clots, a spine problem called arachnoiditis (a side effect of my tumour op) for which my mobility has suffered badly, so I use crutches to get to places. Now I have turned 50 I can only hope for a healthier future.