Going for my First Immunotherapy Treatment on Thursday

So, received a diagnosis of my mystery cancer - I noticed an raised area on my scalp around May and had been referred to ENT. ENT opened the raised area up but could not find a sac - so they closed it up and advised for my GP to routinely refer me to Dermatology for further investigation. GP referred me in June and advised me it would be a bit of a wait (I live in the UK.) Well, in the months that followed, the raised area started to grow in size rapidly and I had to go to A&E twice because I was worried that it was starting to ooze and bleed. I finally made a request for an appointment from my GP in September to which she looked at the growth (at this point it was about the size of a golf ball on my head) and did an urgent two week referral to the skin cancer unit. I had a biopsy of the growth in the beginning of October. Well, got a call around the middle of October saying that it was cancer but they could not identify the type (on my file it was put as a poorly differentiated carcinoma.) They did an FNA biopsy of my lymph nodes and a PET SCAN. Luckily, at the time the cancer was just localised to the scalp. So, plan of action was to get a wide local excision done. That surgery was done on the 13th of November, followed by a skin graft in December. At the time I had clear margins.

Around a week after I had the second surgery for my Skin Graft (this taken place around the 15th of December), I had noticed that the lymph nodes on the back of my neck were a bit swollen. I chalked this up to surgery, but kept an eye on them. After three weeks me noticing the swelling not going down, I had mentioned it to my Oncology team during the MDT meeting with myself, in which the initial plan was for me to get radiotherapy after the initial cancer was taken out. The team decided to delay the radiotherapy and do another biopsy of my lymph nodes to make sure the cancer has not spread. They have also wanted me to do bloods because they wanted to send the initial tumour for further testing to try to identify exactly what type of cancer they were dealing with.

So, I got another FNA biopsy done and did my bloods. Got a call in late January to say that unfortunately, the cancer has spread to three of my lymph nodes; two on the left and one on the right (great) and they were going to change the treatment plan to either chemotherapy or immunotherapy. Results were still waiting on the further testing to identify the cancer. The weeks that followed was another PET Scan, followed by another appointment with Skin Oncology while further things were being found out about the cancer.

Finally, had another appointment with Oncology last Thursday. They have finally diagnosed the cancer as a Poorly Differentiated Follicular Squamous Cell Carcinoma. I have been also told that now they found in the PET Scan that there is suspicion for further metastasis in my T2 vertebrae, and now the plan of action is for me to get Immunotherapy. The plan is one infusion every three weeks for two years. My first infusion for this will be this Thursday.

I am happy to be finally getting treatment for this, but I am also hoping that it is not too late. The specialist did say there is a possibility of it being curable, and said that there are some successful cases with Immunotherapy working for this particular type of Cancer.

Has anyone else gotten Immunotherapy for this particular type of Cancer and had any experiences with it? I know that everyone is different in their experiences.