Hi peeps
Back in August I was diagnosed with secondary Merkel cell carcinoma in my inguinal lymph nodes with no primary site. Well in fact I did have a primary site, I take photos of all my skin lesions and this particular lesion was misdiagnosed as nothing to worry about by everyone, well it was something to worry about. Thankfully it had not got very big and it had gone by the time I got my first appointment. I have been told by my Oncologist that my own antibodies managed to deal with it, but not before it had metastasized to my lymph nodes.
Moving forward to now, all the scans were completed 6 weeks ago but I've still had no treatment. I am still waiting for surgery at my local hospital and an appointment at The Royal Marsden Hospital for another opinion as my hospital has not had a case of Merkel cell carcinoma. I have arranged for a Serology test for antibodies to be done at a French laboratory every 3 months so I can monitor the cancer. My Oncologist agreed for the bloods to be taken here but I have to arrange the carriage to France as it is a test not done on the NHS.
Being a rare and aggressive cancer I have done loads of research and I know there should be some urgency to it being removed but there doesn't seem to be any so I asked for a change of treatment plan to immunotherapy as Chemo has shown not to have any real benefit in the treatment for this cancer. I have been refused this treatment and told to wait for surgery meanwhile this cancer is free to do is worst.
Is there anything more I could do?
Hi TMO
It must be incredibly frustrating for you to still be waiting for treatment to start to treat the MCC that has spread to your lymph nodes. I haven't been in the same position as you, but I noticed that your post hadn't had any replies.
My only suggestions to move things forward would be seek a second opinion, but I can see that you've already started this process, and/or to speak to PALS (Patient Advice and Liaison Service) at the hospital that you are currently under. Part of their remit is to help resolve problems you might have when using the NHS.
If you haven't already, and you are in a position to do so, you could advise the surgical appointments team that you can take any cancellations that come up as you might then be able to get your surgery quicker.
Do come back and let us know how your second opinion goes.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
