Newly diagnosed – no primary found yet

I also had no primary. Appears you already have been checked from stem to stern and then some. 

Unknown primaries are relatively rare in that they affect about 2-6%of those with melanoma. The theory is that there was a melanoma mole somewhere in the vicinity of the affected lymph node(s) but your body's immune system zapped it from the skin. But unfortunately, some cells escaped into your lymph nodes. Because of this immune response folks with unknown primaries fare somewhat better than those with known primaries, according to some studies. So it's nice to have your body's immune system as an ally. The part that sucks is that it automatically bumps you to Stage III.

It does sound like you are experiencing anxiety and that part sucks as well. I had headaches, GI issues, insomnia, body aches, etc. I was mess. Don't be afraid or embarassed to ask your doctor for anti-anxiety meds to help you cope with this diagnosis and to get you through the waiting for scan/surgery results. It doesn't have to be long term. 

Early on in my diagnosis I found it helpful to hear from survivors. I am Stage IIIB, Unknown Primary. Diagnosed in December 2010. Hope that this provides some ecouragement for you. 

Sorry you are dealing with all this Lucy.  However, you will find lots of caring, knowledgeable peeps on this forum.  And yes, quite a few with unknown primaries.  Crazy, right?  And as if your current mess is not enough, there is a whole new language to learn!  There are therapies that may be considered for Stage III patients (and certainly for Stage IV…which I hope you are not!).  I have put together a primer that covers most of the current options that might help you prepare for the discussion with your oncologist if you are interested:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=primer  There is a list of acronyms at the end, if you need those.

Just so you know, there are many of us still trucking after Stage III and IV diagnosis and treatment!  There is hope.  Hang in there.  Ask more questions as you have the need.  Celeste

Hello,

We started right out the gate in unknown world and still don't know!  My husband is considered unknown primary category as well.  He was looked over extensively at MD Anderson.  His large "nodular" (I think about 22 x 22 mm)  thing on his back had no overlying skin component so he was cosnidered stage 4 cutaneous metastatic melanoma with unknown primary (distant metastasis to the subcutaneous skin) from the start.    However, in the decade previous to his diagnoses he had a weird skin flap in that area that eventually disappeared and then year later was same spot where the large tumor appeared.  Hard to think they are unrelated.  Linny is correct, Melanoma with unknown primary in  the research shows that it is relatively rare but can have better comparable prognoses depending on your pathology and the theories related to why it is bit better prognostically, immune response, regression, etc.  If you need the articles, I can provide links.  We are about 5 years out from surgery and scans have been clear to date. 

I'm not the patient but I'm the one who had to be on anti-anxiety meds!  The unknown can be a bit brutal to wrap your mind around and for those of us with whirling brains, it took a while to get a grip and if you need medication, ask for it.  My husband though seems to have no problem with the unknown part, he is more concerned about the stain on our carpet than the melanoma he could possibly have lurking in his body.  Diffirent personalities definitely handle this differently. 

This group is here for you and knowledge can help after you get staged.  Just another quick thing that may help you:  the week before all the MRIs and CT scans after my husband had surgery and before he was scanned, he had horrible headaches and actually said he got dizzy twice and he doens't complain about anything.  I, of course, assumed brain tumors, but everything was clear. The wait was hard but luckily our doctor at MD Anderson called us as we were driving home and said she didn't want us to wait the weekend and told us all scans were clear.  I think she realized I couldn't handle the weekend. Make sure to advocate for yourself if you can, you deserve quick turnaround of information and symptoms don't always correlate to tumors, anxiety can do a lot and you've had a big shock to your life. 

Many hugs, it's pretty intense at first but it will get better.