Hi, I have melanoma. The first sign of this was when a large lump appeared overnight in my neck.(size of a golf ball). This was last February. After various delays I had a ct scan with biopsy and was diagnosed with malignant melanoma in lymph node. No primary site could be found. I had an operation to remove it last June and started on Nivolumab in September. No other lymph nodes were affected.I was told it was level 3 but did not know if A,B,C or D as no primary site. At the moment I seem to be tolerating the immunotherapy well. I’m not sure if the side effects build up as you have more doses. My latest ct scan was clear. At the back of my mind is always the thought of where did all those cancer cells come from so quickly. Also remember seeing PET scan and the lump was bright yellow which apparently meant it was very active. Anyone else have a similar thing with no primary site?
Hi Farm60girl and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community and I was diagnosed with melanoma 8 years ago, although mine was a primary site and I didn't have immunotherapy.
The online community is divided into different support groups and I can see that you've already found and joined the melanoma group which is a great place to ask questions, share experiences and get support.
When you feel ready to post there, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
