My wonderful husband was diagnosed December 2011 with CUP with likely primary site being biliary in origin (immunophenotype consistent with biliary tract tumor/ raised serum CA19 -9). The tumor was wrapped around his aorta and vena cava and was inoperable. He had 6 cycles of very strong chemo which shrunk the tumor by about 50% so our onchologist (Prof Justin Stebbing at the LOC) decided he should have the operation. He continued with two more cycles of strong chemo – but he couldn’t cope with the strongest dose and is now on a regime of a much lighter chemo (5FU) every two weeks for at least a year. I’m frightened to talk too soon, but so far his CA count is normal and the MRI scans are clear. He’s had every type of test and we still don’t know where the primary site could be. The only side-affect he seems to have now is the terrible itchy feeling in his hands and feet. He has gone back to work and we have just started socializing for the first time. I really hope my story will encourage others and of course i will keep you all posted with his journey.

Hi there,

My 75 year old Dad has been diagnosed with CUP.
I see here that some people mention LAB21 test.

What is it please?
Is it helpful?
Is it easy to get?

Many thanks for your help,
Eleanor

My darling daughter Sarah lost her fight for life on the 27th June 2012. I was with her when she passed away in the early hours of the morning.  Sarah was diagnosed with secondary liver cancer of unknown primary (CUP) in February 2011.  Sarah had just turned 26 years of age in the January of that year.  She passed away aged just 27.  Prior to diagnosis, Sarah was fit and healthy throughout her short life, she had never smoked and rarely drank alcohol.  She was a gym queen and was in her second year at university.  Initially, Sarah had pains in her tummy and had begun to feel very tired.  In time Sarah was offered a scan and this is when it was discovered that her liver was enlarged, a biopsy followed diagnosing CUP.

Like many others we had never heard of CUP and was so very scared when we realised what it meant. It was as if we had walked into a nightmare that we would never wake up from. One of the things that shocked me was the medical profession and the way they delivered the prognosis.  Although, Sarah had chemotherapy, all it did was to destroy her more and took away the vibrant girl she was.

The first oncologist did not give us any hope and it seemed nothing in the medical world could help Sarah. we were all so frightened.  The fear never ever left us because no one seemed to want to give us any hope.  We are a postive family and we helped Sarah and each other without much help from anyone else other than Sarah’s GP who was with us throughout.  Needless to say we asked for a change in the oncologist and thankfully the second one was more human in his approached and did try to find the right chemotherapy to help her. Sadly, it did not work because like so many others with CUP, they could not detect the primary cancer, nor did they really try.

Sarah fought for her life with every breath she had but the cancer spread to her young lungs and totally destroyed my beautiful daughter.  More hope should be given to CUP and much more public awareness.  I have been giving to cancer research for nearly 30 years, more of this research money should be made available for CUP.  More awareness needs to be delivered worldwide, not in time, it needs to be now.

I miss my girl so so much, it has broken my heart that her life could not be saved.  They say times heals, to me it just seems to be getting harder. I miss her more and more each day. I will never get over losing my beautiful daughter.

Lesley

This is the story of my lovely Dad who died in January this year, aged 71. I’m sharing it as I hope it may be useful to anyone else out there looking for answers in their fight against CUP.

My Dad originally went to his GP in May 2011 complaining of back pain. After a couple more visits at which he was told it was most probably a muscle strain, the GP eventually found a lump in his side and sent him for a biopsy. He was diagnosed with a secondary tumour in his rib/chest wall in around August with the primary cancer unknown, although from the beginning his oncologist thought there was a strong possibility that the primary originated in the bowel. A colonoscopy came up clear but the oncologist still suspected bowel cancer and my Dad started on ECX1 chemotherapy on the CUP1 trial at Maidstone hospital in September. The plan was for him to have two cycles of chemotherapy if, after the first, scans showed some improvement in the size of his tumour.

The chemotherapy made my Dad extremely ill almost immediately. The sickness and constant nausea made him lose an awful lot of weight and most days he was unable to keep any food down at all, surviving almost exclusively on drinking yoghurt. Immediately after his diagnosis, my Mum had put my Dad on a cancer fighting diet (turmeric, green tea, lots of fresh fruit and veg, dark chocolate etc) but this went out the window once he started his chemotherapy and couldn’t eat.

It wasn’t until scans showed that the first cycle of chemotherapy had had no effect and his secondary tumour was still growing that I discovered this website and found out about molecular profiling and LAB21. We had already asked my Dad’s oncologist whether there were any other tests that could be done and hadn’t been told about molecular profiling. We immediately arranged for the test to be done privately by LAB21 which they were able to do using my Dad’s original biopsy. I believe it cost around £2500. Within 15 working days, LAB21′s tests showed that my Dad’s primary cancer had a 99% probability of being cancer of the kidney.

By this time, my Dad was too ill and weak to have a further course of chemotherapy targetted at kidney cancer but was told that, if he could build his strength up, this might be an option. Unfortunately, my Dad’s secondary tumour was still growing and was by now spreading to his stomach. By November, the tumour on the rib and chest wall was so large that it pressed on his spinal column paralysing him below the waist. He was admitted to hospital for 2 weeks as he couldn’t walk or go to the toilet but finally came home once we’d been able to set up a hospital bed etc in a downstairs room and arrange for carers to come in 4 times a day to help my Mum with his care. He deteriorated quickly, getting thinner and thinner and needing to take ever stronger pain medication which made him drowsy and incoherent, until he finally died at home on 21 January 2012, a shadow of the vital, funny, intelligent man we had known. His death certificate said cancer of the kidney.

I’ve gone through the whole range of emotions before and after my Dad’s death but one of my recurring thoughts has been “What if we’d had the LAB21 test done earlier?” Would we have known that he had kidney cancer in time for him to have received the right type of chemotherapy or even surgical removal of an affected kidney? We will, of course, never know. Regardless of the NICE guidelines which say that molecular profiling isn’t available on the NHS, I do feel strongly that oncologists should make CUP patients aware of the availability of these tests. One of the hardest things about a CUP diagnosis is that feeling of helplessnesss, the feeling that the medical profession is simply stabbing around in the dark - and I don’t feel patients should be denied any information which may just make the difference between a diagnosis of CUP and an accurate diagnosis of a “proper” known cancer.

Initially, I was angry that my Dad’s oncologist had made the decision not to tell us about molecular profiling and that we had to find out about it ourselves on this website. Now I just feel sad.

Jeanette (daughter to John Archer)

After a year long battle against CUP secondary liver cancer my wife’s hard fought and brave battle has finally been lost.  Her fight has been an inspiration to many people as she did not give in to the cancer and was determined to live as normal a life as possible.  We did do many things over the year which has given us many memories to add to those we already had and she will remain in our hearts and minds for the rest of our lives.

I do know that Julie and I have spent a lot of time over the last year trying to explain Cancer Unknown Primary to people and how the not knowing make treatment harder to define.  Most people can not believe that they can not find the primary and have taken time to try and understand to the problem.  We did have a second opinion by the royal marsden and they did further testing on the biopsy using a new method and did give us a high probability of the primary which did help steer the treatment.

As we did not want flowers at the farewell many of our friends and family have chosen to make donation to the CUP foundation (I set up a just giving page linked to the CUP Pages) to try and help fund the research which is a credit to how my wife highlighted the problems.

I also have to thanks everyone on this forum and the CUP foundation site for all the support and information provided as it has been a godsend to find others that know about the issue around CUP which helped me gain a better understanding of the problems we encountered.

After the services at the church and crematorium we had afternoon tea (for 200+ that attended the farewell) as my wife had enjoyed many of these over the last year with her friends and family.  During the tea my Nephew sang a song that meant a lot to me and said everything I felt and wanted to say.  It is a modified version of Full of You by Rick Astley (he was topping the charts when we met 25 years ago) and I would like to share this with you all.  I am going to try and see if we can get permission to use this to raise further funds for the much needed research and will let you know how I get on with this.

Link to song: http://www.youtube.com/watch?v=2QN6U_2CTJs&list=FLDI2be2OZ-LO8F9lcaVs7JA&index=1&feature=plpp_video

This is an awful time but I am determined to do everything I can to support others that are suffering as we have and use Julies fighting spirit as my inspiration.

David Knapp

I’ve sent info to my team on Lab 21 but they are not keen. Obviously if it’s not going to help me then I’ll be glad not to spend the money but my impression is more that they don’t know about it and therefore assume it is not valid.

So I wondered if anyone on here has had a positive experience of this type of testing? I have squamous cell carcinoma.

Many thanks.

Hi agian

Had my appointment yesterday at DRI. John i live in doncaster south yorkshire. The Dr was very nice (i saw a different one this time, good or not im not sure) any way she has refered me to Leeds, i think only because iv asked and have the right,she said its not going to change the diagnosis! as for lab 21 she has never heard of it but that referal is in the hands of my gp, so im waiting for a decision from them. Janet i have tried phoning royal marsden i think me and you have had very different experiences with them. Any way on a positive note the Dr said im looking very well and gave me a quick check up, no lumps bumps or pain, so that is good and we are doing the “watchful waiting” (i hate that phase!!) I just keep thinking and clinging on to what Dianne wrote, she said she was diagnosed 5 years ago and nothing has happened so far so iv decied to follow in her footsteps!! Thank you all again for your time

Mandy x

A bit fed up at the moment, looks like the Royal Marsden are  now to busy  and have stopped doing 2nd opions, so im off to my appointment at our local hospital in 2 hours and will ask about another top hospital we could try. I have received a letter from my primary care trust about them funding lab 21 and although they havent said yes they havent said no, they want more details off my dr so who knows, its all a waiting game!!

Mandy x

I was very saddened to learn yesterday that Jane Barrett passed away on July 12th.  Although I had not met Jane personally, her advocacy work here in Australia was well known.  Jane will be remembered for many things, but especially for the hard work she put into raising awareness of CUP,  and for creating the CUP Action Network.

Thank you Jane for all you did for the CUP community.

To Johnnie,  and Janes family and many friends, you are in my thoughts and prayers.

Lyn

Australia