My mum/best friend has incurable cancer- CUP

Hi Jess

There is always the hope that they can localise the cancer and deliver some effective treatment.  Some cancers are too small (but no less deadly) to show on scans.  They searched for mine for over a year before they found what they thought was the primary having deduced I had cancer from a secondary.  It then disappeared again.  I am now nearly 2 1/2 years on and still here.  We will do what we can to support you.  You may also find the carers or emotional support forums will also be of help.

Hi Peter,

Reading your story is reassuring as I've just been diagnosed with CUP and they cannot find a primary or even tell from the tissues where it may have started. They have offered Radiotherapy to reduce the current swollen nodes (neck, chest and below lung) and will look at systemic chemo although they are not confident on effectiveness. I have been given a prognosis of 12 months.

I'd be interested to know what treatment you have had as I'd love to still be living in 2 1/2 years!

Many thanks Cat x

Hi Cat, I live up in Manchester and like you had a very negative and pessimistic prognosis in January. I was also told that chemo would have a very insignificant chance of doing anything and a 12 month prognosis. I went on line to cancer research uk and looked under trials for Cup. There were 3 available. The first one was not applicable based on my cancer type (squamous cell), the second was donating blood and tissue samples to try and identify ‘floating primary material), although no active treatment, but the third was more appealing, the trial is ran from The Royal Marsden in Sutton Surrey and is immunotherapy using a drug called Pembrolizumab. It’s an existing drug used for things like bladder cancer. About 1 in 3 cup patients have a positive response (slow, stunt growth or, like in my case, shrink). Treatment is once every 3 weeks and a scan every 12.  I got my consultant at The Christie in Manchester to refer me. Some people have some side effects such as enlargement of body organs but can be usually controlled by steroids. Stay positive and don’t give up. I got a second opinion at the UCL in London and the consultant there told me that he had a cup patient on his books where no treatment had been given and was still going strong 5 years after diagnosis. There are also examples where people have died within a few weeks. The issue here is that cup cancer is relatively rare and whilst the average might only be 12 months, there is a wide range of timescales based on the individual. I have now joined a gym, walk 8 miles a day, have lost 3 stone and have lessons at my local hospice on keeping my mind positive. Reach out to places like your local hospice - surprisingly they are very positive places! Good luck. It’s scary but you will get stronger with time and knowledge.

Hi Paj,

Thank you so much for all that information it's so useful and reassuring. I also read on your profile that you had some of the secondary nodes removed bit I've been told that's not possible. I have exactly the same cancer as you squamous carinoma that has matasticised. My swollen lymph nodes are on my collar bone and some in my chest which they are going to treat with radiotherapy.

I wonder where yours were that were removed as I was told categorically that it wasn't possible.

I am in Lincolnshire and under the Lincoln Hospital. We only have one oncologist and she doesn't have the best bedside Manor. I'm really tempted to get a second opinion like you. 

Many thanks,

Cat

• I would insist on the second opinion! Your consultant sounds as negative as mine was.

cup usually presents a lump in the groin or neck and has invariably metastasised. Mine started in the groin in September last year. It was a tiny lump that appeared one morning. Following scans and referral to a surgeon, it was removed with the lymph and diagnosed with cancer in December.  That’s when I was referred to The Christie. I have 4 sets of lymph nodes that are affected.  All of them in the lower abdomen.  

some of the trials don’t accept you if you’ve already had treatment so worth chatting with consultant if this could be a viable option for you.  It’s important for me to state that I am not a medical clinician and I am certainly not qualified to give you advice - just share my story and experience. I found it important to gather information before I started any treatments.

Hope this is of use.

Thank uou

Peter

Thank you Peter, it really is helpful.

One last question, how did you go about getting a second opinion?

Many thanks,

Cat

I just went to the original consultant and asked her to arrange. It’s a very common practice and it won’t offend them.  I got an appt within 4 weeks.

Hi Cat.  I am so sorry to hear of your prognosis.

I only had surgery.  However, I am way off the usual cancer pathways having found, then lost the cancer twice.  I think the current feeling is that my body is just good at dealing with the cancer.  It is quite likely to return.

In my case it was a neck lymph node that was the indicator.  Basically it was doing its job properly as a lymph node. Having had surgery and removing various bits of my mouth and neck there was no sign of the cancer.  A year later a tiny tumour was found in my tongue - only to go again.

I am lucky that I have a fantastic secondary and tertiary team that listened to my concerns about treatment and supported my decision to keep further surgery and any radiotherapy in reserve for any return.

Certainly ask for a second opinion or to be referred to a larger cancer centre where they may have more experience of dealing with your situation.  To a large extent the treatment pathway is in your hands and you need to be calling the shots based on informed discussions with the clinical teams.

Hi Cat  sorry ti but us we are all entitled to 2nd Opinions am so sorry your oncologist has no bed side manner. I am lucky enough to live in between 2 excellent cancer centres Sheffield and Leeds. I was treated at Leeds cancer centre and my oncologist is brilliant I even have his personal email. I didn’t need a 2 nd opinion as my cancer was and us curable but I wouldn’t hesitate to get in touch with the Royal Marsden they are world leaders in the field. good luck don’t take this lying down there all sorts out there including prembrolizumab. Trial where I know a few who are on that trial for reoccurrence s in head and neck cancers. 
Good luck Hazel 

Hi Hazel,

Thank you so much for your reply I really appreciate it. I think I will ask for a second opinion at Royal Marsden just to put my mind at rest that any decisions on treatment are the right ones.

I'm so glad you are doing well and living a full life as that's exactly what I want to do! 

Many thanks,

Cat