Newbie

Hi Seoul, my diagnosis sounds similar to yours. I too found a lump in the left side of my neck and after weeks of biopsies, scans and investigative surgery I was finally diagnosed with Squamous Cell Carcinoma of left Neck with Unknown Primary, HPV 16+ In June last year. I had my tonsils removed nearly 60 years ago so the Primary couldn’t be there and despite having a PET scan my Primary still has not been found. My Oncologist told me that it was possible that the Primary was so small that my own body’s system had either dealt with it or that it had just been absorbed. He also told me that the cancer I had was considered curable. I received 30 sessions of radiotherapy 5 days a week for 6 weeks and 2 sessions of chemotherapy which finished on 18th August last year. At the end of November I had my post Op 12 week scan which showed that the area treated had responded favourably to the treatment and there were no concerns throughout the rest of my body. I will now be closely monitored for the next 5 years and since the start of this year I have had 2 more checks including a camera to check my throat, all has come back with no sign of any concern. It will be 5 years before I can officially receive the all clear. All this so far is good news and I pray it continues,  I feel as well as I’ve ever felt except for some longer term side effects of the treatment but that’s a small price to pay.  However having an Unknown Primary is a constant worry and always at the back of my mind, but I have to put my faith in my own body to tell me if something doesn’t feel quite right and to our wonderful medical staff who continue to monitor me. 

I wish you well Seoul and hope all is good with your ECG today. If there’s any questions you have please go ahead and ask.

Beat Wishes

Carol

Carol,

thanks so much for your note. It has helped me considerably. Language barrier is huge here and to hear there is possible light at the end of this tunnel makes me feel better. Tomorrow the first round of chemo starts. 4 days then 17 days rest followed by another round. Then they want to to see if they have contained it. They are talking about possibly removing the lymph node if they don’t get it. I will just see what happens. Am not looking for forward to the side effects but if it gets me through as you have said a small price to pay

Hi again Seoul, do you know what your cancer diagnosis is, the name. I didn’t have to have my lymph node removed however I know there are many others who have. As yours is classed as a Head and Neck Cancer I would suggest you join the Head and Neck Cancer group which I’m also in as you will get a lot more response and information about your current condition and treatment on that group rather than the Unknown Primary Group. Stay on them both though as you’ll still want information about your UP (Unknown Primary) but it seems like they are focussing on your neck lymph node which is why you will be considered as a Head and Neck patient like myself. The group are absolutely fantastic and there are some really supportive people to help you get through this. Stay strong Seoul. See you on the Head and Neck Group.

Regards

Carol xx