My diagnosis

Hi , I’m a patient as well, 5 years ago my first biopsy to a lymph node through my back showed metastatic melanoma then I had to wait for some further tests on the sample to check what treatment might be best, for me that depended if my test came back BRAF +, it was a genetic type test for a mutation. I have not had a primary that was found but I’ve been on treatment to reduce the many lymph nodes that were first affected, and again for any recurrence. Each different cancer type seems to have a different treatment regime. 

Have they explained what’s going to happen next, or are you still waiting on results? I wasn’t sure if you were saying your results will take a further 2 weeks, or if you’ve had one set of results and the next results will be in two weeks.

I found things difficult to sink in when I was first diagnosed, I used to worry about them not finding a primary, until I read up abit more that my immune system may have already dealt with it. How are you feeling ? I know you mention feeling lost, I am happy to listen if you want to say what’s been happening, sometimes that helps me, writing things down clarifies a bit more what I’m feeling or what I think I know or don’t know. 

There is a head and neck cancer group that I wasn’t sure wether to give you the link for when you mentioned squamous cell carcinoma. I’m thinking that you’re posting that you have a cancer that is in your lymph node in your neck with no primary found, but I’m not sure what type of cancer they have found. There is also an ask an expert section on here where you can ask a nurse questions, or you may have been given the contact details of one from your hospital. I was, and she was really helpful between first confirmation of cancer and when treatment started, (I then moved to a different hospital for treatment). 

I wanted to reach out to help to make things less confusing, and I feel like I’ve probably confused both of us on this occasion!

Take care

Thank you KTathome 

my results will be back in two weeks and thanks for your write up 

the consultant on my needle biopsy said that the cancer cells in my lymph node was pointing to the primary being in my head and neck area so hopefully will know soon 

kind regards

Hi Taffcar, that may be because the neck lymph’s are the nearest, with me my pelvic and abdominal nodes were affected and so when the biopsy came back as melanoma they thought the primary might be on my legs but did not find any suspicious area of skin.

You mentioned squamous cell carcinoma, which is mentioned a lot in the head and neck group and in the skin cancer group. I will put the link to head and neck below for you as you have seen a dr from that section.

https://community.macmillan.org.uk/cancer_types/head-neck-cancer/discussions

With me as many nodes were affected the thinking was it might be lymphoma of which there are many types so I was told/advised not to google and wait for the results, I’m so glad I did wait as I would have googled the wrong cancer. I just tried to keep myself distracted until the results came back, then I laughed when they said it was melanoma I just wasn’t expecting that, and time seemed to slow down while I was expecting things to get moving, treatment to start. I had systemic treatment meaning it would work on the whole body with targeted therapy and immunotherapy, later when I had a recurrence in one node I had surgery to remove that one. I haven't  had radiotherapy that some people have to lymph nodes. 

If you want to find out more info while waiting the information and support pages on Macmillan are good as a starting point then you could ask questions on the site from people who have experienced what you might want to find out about.

https://www.macmillan.org.uk/cancer-information-and-support/head-and-neck-cancer

I chose not to do that but when I was feeling a bit alone after my diagnosis I came here to have a bit of companionship from those who I felt would understand the uncertainty that I was feeling and the difficulty I sometimes felt in being positive. You need to do what’s best for you.

I hope you will let me know when your results come through, or feel you can ask anything further here or in any other group.

Take care