Cancer of Unknown Primary (CUP)
CUP is invisible in Australia. I know. I was diagnosed with it in February 2009. As a health professional and a CUP survivor I am stunned by the silence and lack of recognition of this cancer.
CUP is a cancer defined by the word ’lack’- lack of a primary, lack of a clear definition of 'CUP', lack of clinical guidelines, lack of CUP-specific clinics and health practitioners, lack of research and clinical trials, lack of basic information and support, lack of representation and a voice, lack of public awareness and understanding.
Why the silence?
Why doesn't CUP get talked about? It’s definitely there in the statistics:
a)seventh most common cancer in Australia
b)third most common cause of death after lung and colorectal cancers
c)low 5-year survival rates - 9.1% compared with breast 88% and prostate cancer 85%.
I’m not particularly fussed with stats as they do not relate to the person and their individual cancer. They should be read with caution. However, they serve a purpose here. My belief, to mix a metaphor, is that CUP is in the too-hard basket.
What is CUP?
So what is CUP? It is a group of very different cancers, with different histories, patterns of spread and symptoms. Cancers are named after the site where they begin ie bowel, lung etc. This site is called the 'primary' or 'main cancer'. If the cancer spreads to another part of the body it is still called after the primary eg bowel or lung cancer. The distant cancers are called the 'metastasis' or 'secondaries'. Locating the primary is vital to target treatment.
Where is the primary?
In CUP the primary cancer cannot be located. It may be too small to be seen. The body may have dealt with it and it has gone. It may be discovered later. Some people may be classified into this group because of poor followup/testing but most of us are here because the primary cannot be located.
I was diagnosed with metastatic cancer of the neck, unknown primary ie I have secondary cancer in the neck. They cannot find where the cancer began. There was speculation the primary could be from the neck, from a past cancer on my eyelid or possibly from other areas. These had to be checked and ruled out. After two operations and endless tests the primary has not been found. I therefore went ahead with 30 radiation treatments to the known cancer in my neck.
With the changing thoughts about the origin of my cancer and being too unwell to follow things up during treatment, it took me a while to realise there was a group I fitted into - CUP. I therefore set about researching the area. I have come up with almost nothing.
What is happening overseas?
Things are happening overseas in the US and UK. There is a great UK CUP website set up by John Symons, whose partner Jo, died of cancer of unknown primary:
It has been a lifeline. It included a report on the first ever conference devoted to CUP, held in London in October 2009.
The site also made available the National Institute for Health and Clinical Excellence guidelines for the diagnosis and management of CUP for consultation, which will be finalised this year.
Just recently the UK press reported that the Experimental Cancer Medicine Centre Network, which links researchers around the UK, is starting a genetic trial relating to CUP.
What is happening in Australia?
Hardly anything at the moment that I can find. There is a monograph on CUP put out by the Cancer Institute NSW suggesting that some subsets of CUP may represent a new form of cancer. I have yet to discover if more research is to follow.
A meeting of clinicians and researchers was held in June 2008 organised by Cancer Australia to discuss CUP. There were a number of suggestions. Has there been any anction? I have found nlthing to date.
The Cancer Council NSW is going to support CUP and is currently looking at ways to facilitate this work.
Silence=inaction=continued poor outcomes
We cannot afford to wait around and hope that things will change. They won't! We need a voice to lobby for change, to turn those ‘lacks’ into ‘haves’and get a better deal for the 3,200 + of us diagnosed with CUP in Australia each year.
Let's get together
If you have been diagnosed with CUP, are a current or past carer of someone with this diagnosis or have been touched by CUP in some way, please get onto this site and tell us about your experiences, what you want changed, your vision for the care and treatment for this, at present, invisible cancer.
* Cancer Australia website
Cancer of Unknown Primary says it all. What is it - is it as some have suggested coding errors when entering data? Is it pathologists not knowing how to classify something they see? Is it, as the CI NSW suggests, a cancer in it's own right that has not been recognised? Interesting questions that are going to require some dedicated research. But, that doesn't actually help you! You are left hanging. No one understands what you have, there are no specific support groups, there is little in the way of information. In effect you are in some sort of "classification suspended animation".
So good on you for working to get this onto agendas around the place, to have this better researched and to have better support for people like yourself.
Interesting read ... what sort of cancer is cancer of unknown primary? I ask because i was diagnosed 21 years ago with amelanotic melanoma and it was an unknown primary ... am yet to find out with my current cancer as i am only just starting to get to the point of asking questions and no one around to ask. I think some of the things you have stated are a bit across the board. In saying that i certainly am not trying to distract from your plight.
Hi em, posting 4 yrs later and hoping your still in the group. Hoping your well. I have just been diagnosed 3 weeks ago. Found secondary in my lymth nodes under my arm. Squamous cells. Still looking for the primary. Radiation awaits.....
Mu aunty had some kind of cancer in or near her neck and the primary was never found . I didn't ask her much about it at the time but I never understood how the cancer found couldn't be the primary or how they knew it wasn't . That was over 10 years ago and she is still cancer free .
That's the sort of stuff we want to hear 🙂 I have a friend in sydney at the moment with a secondary in his neck nodes as well and primary unknown. They show different cells as a secondary apparently. In a way I suppose you cld say that we're lucky that the secondary didnt show in a vital organ that cant be removed. I have learnt to stop asking professor google as he can be quiet depessing most times. Love and best wishes to your aunty♥♥♥
Don't know if anyone still reads this thread. I'm a newbie living in the UK - where CUP is also virtually unheard of. Just wanted to offer some hope - as I had it diagnosed in 2102 and have been cancer-free for almost 5 years.
I found a painless lump in my neck - turned out to be secondary adenocarcinoma of lymph nodes. This was treated with a radical neck disection, 33 sessions of radiotherapy (wearing a moulded mask!) and 2 blasts of chemo (Cisplatin) My consultant said he was looking at a cure - and I believe him!
Feel fine now - left with a few side-effects ( numb neck and shoulder and massive tinnitus) but I'm happy to have them - as it means I'm alive!
If anyone wants to talk about CUP - please get in touch 🙂
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.