Hello to all on the Forum. My wife Caren S was registered
with your site for around 2 years but unfortunately passed away last month on
16th October.

Caren was initially diagnosed with CUP in April 2010. A
second opinion agreed with the first diagnosis but a third opinion 9 months
later re-did the pathology on her hysterectomy carried out 10 months previously
and found the primary cancer in one of her ovaries so re-classified it as Ovarian
cancer. During this time of limbo she had started a treatment at a private
clinic in Kent having mistletoe therapy. Mistletoe extract was injected into
her, the body’s natural immune system heightened to fight the mistletoe poison
but the theory is that it also fights anything else that should not be there,
including the cancer cells. Caren had this treatment for over 2 years, her GP
and oncologist were originally sceptical of this treatment, but after over 2
years were all convinced something was stopping the expected rapid spread of
the cancer. The treatment is widely used in Europe, predominantly Switzerland
and in Germany where they treat around 30,000 patients a year with it. Aberdeen
University Hospital is now taking part in a trial with mistletoe in treatment
against cancer. Caren’s cancer had already spread to several areas but the
mistletoe appeared to be holding things at bay, but in August things were
obviously progressing but were still able to continue a happy family life, but
in October things went rapidly downhill and she passed away peacefully at a
hospice in Southampton.

Useful links

Raphael Medical Centre http://www.raphaelmedicalcentre.co.uk/

www.mistletoeforcancer.org.uk/news/files/tag-aberdeen.html

My best wishes go out to every one on this site and their families, Richard S

(If the administrator can let me know how I unsubscribe it would be appreciated.)

I have been diagnosed with a primary breast cance and a CUP  wich is undiagnosed after MRI Ct and bone scans . Have just had a PET  scan trying to locate my second primary tumour . If it goes undiagnosed I am very frightened of how this will effect me will i die if untreated , because has not been found

Susan Jeffers, author of many ‘self help’ books, who was well known on both sides of the Atlantic died recently from CUP. We offer our condolences to her husband Mark and children.

http://www.susanjeffers.com/home/index.cfm?CFID=1935132&CFTOKEN=28937788

In July I found a lump in my right side neck. A visit to my GP suggested that I had a tooth infection as I did have extreme sensitivity, so antibiotics until I saw my dentist. After a molar extraction and more antibiotics the lump was still there. I then got a massive infection in the extraction so this time took myself up to A&E. The Dr. I saw did blood tests and xrays, prescribed yet more antibiotics, but told me that the lump in my neck had nothing to do with my tooth! An appointment was made for a scan. Two weeks later they scanned and aspired the lump, the result was squamous cell carcinoma. Within 2weeks I had a PET scan and an MRI. Results were that the primary site was at the back of my tongue. So admitted to hospital the next week for a biopsy of the tongue mass. Result was negative. A false positive PET scan. I was diagnosed with CUP. My consultant told me that the primary had been most definitely in the head and neck region, but either my immune system had got rid of it or it is so small that it is undetectable. I do not smoke or drink, and for the most part I am healthy.

The next week I was in for a neck dissection to remove the lump and 49 lymph nodes. I was in for 9 days and although the neck dissection was not that bad, yes you guessed it, I got an infection and was on more antibiotics.

Results were that 48 lymph nodes were good but for the node with the tumour in it. Also unfortunately the cancer cells had spread intothe surrounding tissue of that node. The plan is one day of chemotherapy, 5 weeks of radiotherapy, one day of chemotherapy,and a final week of radiotherapy. To add my Consultant and teamhave been wonderful, and my specialist nurse has been incredible.

My neck dissection and all the stuff that comes with it are healing well, apart from of course! A couple more infections. Treatment starts on November 13 at The Royal Marsden, Chelsea. It is going to be a bit of a rough journey over the next couple of months. I will let you know how I get on.

Hi everyone, iv just found this site,
I was diagnosed in 2009 with melanoma stage III
I had operation in feb 09 they removed lymph nodes under my right arm,
I now have a lump under my right arm, the reason I’m concerned is they couldn’t
Find the primary source, is there anyone else in the same situation or similar,
To give advice or understanding of it,
Thanks Pat.

My name is Dee. I am 45 years old, married with 3 children, aged 11, 12 and 14. And I have just been hit by the CUP train. I am a teacher, a vegetarian and all round fit and healthy person. (I was!)  In August we dragged our children round Paris on foot! In September I started back at work for the new term. There was a niggle. For a couple of months I had  felt uncomfortable after eating, my stomach always felt full, I couldn’t lie comfortably on my front to do those essential core excercises at the gym! I joked to my husband that my liver felt as if it had fallen out from underneath my ribcage. Did he want to feel it? Certainly not! But I wasn’t in any pain. Mother and sister, both nurses, insisted I went to the GP at the beginning of September.

My GP sent me for blood tests and booked an ultrasound scan on my liver. I had the scan on the 10^th September. I knew it was serious because the GP had the results within half an hour. He held my hand and told me it was metastasised cancer in my liver. Since then, I have had blood tests, a gynae ultrasound, CT scan on my abdomen, CT scan of my head, mammogram, MRI scan and a biopsy on my liver. The CT scan showed secondary cancer in my liver, as expected, but also in my lungs. The CA125 test was raised pointing to ovarian cancer, but nothing showed on any of the scans. The tests from the biopsy suggested breast cancer, but neither the mammogram nor MRI scan revealed a primary site.

During thelast few weeks as the medical team have tried to find the primary cancer, my has been coordinated by a handful of professionals. I was referred to a gastro/intestinal consultant initially, so all the tests and scans were coordinated by a specialist nurse from that team. She visited me in hospital when I had the biopsy and kept me informed of results for all the tests. The results were reviewed by a multi disciplinary team – and they decided what action to take next.  Since no primary has been located my point of contact has become the specialist CUP oncology nurse and she has provided information and links to support.

I think the last few weeks have been so stressful because nobody would tell us what was happening, although it was obvious to us that they all knew more than they were prepared to reveal. ‘It’s serious,’ is as far as the diagnosis/ prognosis went. I have gratefully used this website and researched CUP extensively. Really, I have put the pieces together myself. Last week, when we finally met the CUP specialist for our area, he confirmed 12 months as a realistic life expectancy with chemotherapy to offer a little more time. We took the children away for a few days last week to give us all a chance to talk and be together, but we are reeling. I have tried to explain to friends and colleagues how devastating a diagnosis of CUP is. There is such positive news out there about cancer treatments and therapies and friends offer so much hope from this that I feel cruel in snatching this away from them. They think I have given up!

I started the chemotherapy today. We have been told the chances of it slowing down or shrinking the tumours are 50/50. The drugs they are using are cistplatin and gemcitabine.

I read Mel’s story today. It is heart breaking.

Thank you to Jo’s friends. I have felt well informed attending appointments and this is due to the excellent information I have had at my fingertips.

After an 18 month battle with CUP, Mel, my darling wife, died on October 14th. Her story has been charted on this site. Secondary cancers on the liver were identified in August 2011 as a consequence of Mel’s participation in a national screening programme for Ovarian Cancer. CUP was diagnosed and a course of ECX was prescribed which only stabilised the cancer and slowed down the growth. Following consultation  with second opinion of CUP expert in Clatterbridge, a further biopsy and use of Lab 21 tests a different chemo (Irrinotecan) was used in February 2012 which did have a positive  effect and it was agreed that use of the SIRT (insertion of radioactive pearls) programme at the Christie would be worth pursuing. However delayed by funding issues (we are based in Wales which does not fund SIRT) meant that by the time we had resolved the issue the cancer had spread in the liver and the bilorubin count was too high for the SIRT procedure to be applied. Despite  effforts by specialists at the Christie to reduce the bilorubin count the tumours continued to grow in the liver and treatment had to be stopped at the end of September.

The care and support of the three oncologists in Mel’s case was commendable but we can’t help wondering whether the delay caused by the failure of Wales’ health service to fund the SIRT programme and the subsequent delay contributed to the outcome.

Above all its clear that patients diagnosed with CUP need specialist advice and support at an early stage from clinical staff  informed about CUP  so that tests and treatment options can be pursued rapidly and extensively.

While other cancers have specialist oncologists and specialised nurses, the CUP patient is often left alone.

Also given the lack of an identified primary it is the case that the CUP patient is often left without access to newer treatment options because of the lack of an evidence base to support funding decisions.

Well that’s it, rant over but it doesn’t stop the deep loss we feel for Mel. Her positive attitude throughout the last eighteen months and her  positive response when treatment had to be stopped were an inspiration to us all. In planning her funeral Mel and I agreed that donations would be plit between cancer research and Jo’s friends.

Love to all who have helped us

Peter

My partner has just been diagnosed with CUP – I don’t want to leave a stone unturned and we are considering paying privately for one of the ‘new frontier’ test (Lab 21 etc) as the nature of the tests seems to vary, I would be grateful of any views on where to start in terms of which test to prioritise? And to hear of other people’s experience on this. Thank you all in advance. D.

Just thought I would share this information with everybody – and that is all it is – information.

My husband died of CUP last December.  Because of needing to know where the primary cancer was and to hopefully rule out the possibility of it being  genetic, I paid to have Lab 21 examine the tissue sample retrospectively.  This took 5 days and came back as 95% positive for Mesothelioma.   This came as a shock, but I felt these results acknowledged the acuracy of Lab 21, certainly in my husband’s case.  I don’t know if this posting will be of any use to anyone, but I felt it necessary to share this. Janet

Hello from Australia In 2010 my husband Douglas was diagnosed with a tumour on his right Trigeminal Nerve this was after almost eighteen months of being told his symptoms were nothing more than either Neuralgia or an infected tooth we saw a new GP who after being told of weight loss decided to investigate the result being as above. He went in for surgery to remove tumour but on inspection it could not be removed due to being within the nerve itself.,scrapings were taken to try and identify what it was , the result being Large Cell Carcinoma Melanoma related they then told us that this was a secondary sight, and that further scans would be done to try and locate the Primary Site they did  a Cat SCan and a Pet Scan and could not locate the Primary we were stunned having never heard of this before, Doug then had a course of radiation therapy and after further scans were told he was at the moment clear. Over the next 12 months they kept a close watch and up until December 2011 all was well, the in early 2012 a lesion appeared on the top of his head back to the doctor who sent him to a skin specialist who said it was not a skin cancer and to just watch it. Within weeks it had grown from 1mm to half a centimetre, so back to Dr. who then sent us to a General Surgeon who said he would book him on to his schedule to remove it, this took place early April by which time it had grown to over three centimetres and looked like piece of bad cauliflower, sixty stitches later it was gone. The Pathology said it was a Leiomyosarcoma a very aggressive cancer that usually only grows within the body on smooth muscle sheath.,again more scans and again no Primary site was found. So once again we sit back and wait to if it pops up again somewhere else. It was only when a Newspaper had run an Article and interview with another sufferer that we had heard of the term CUP our Doctors had never actually explained it in that way, anyway so far so good we hope that this will be the end of it Good luck to everyone else who are fighting this insidious disease  Anne Ibbotson