Cancer of unknown primary

Hi I’m sorry to hear about your Mum, it must have been very hard for you to hear those words. I’m glad to see that you have joined the friends and family group as you will probably need some support going through this. You might also find at some point the supporting someone with incurable cancer group might be of help. 

I was for a short time put in the category of cancer of unknown primary, as my primary was never found but from a biopsy into a lymph node was decided to be metastatic melanoma I was told chemo did not work for my type of cancer, but after a few more weeks of awaiting biopsy results I was put on targeted therapy drugs and treatment for me has been good. I can only imagine how hard it must be to either accept that there is no treatment available or that the treatment isn’t an option as it would make what little time that’s left more unpleasant and possibly shorter. My cousin was diagnosed in March with cancer in her kidneys and went through various tests to find her primary so they could start treatment and she sadly passed away in May. I found it difficult to be anything other than positive that she would pull through and hoping for a treatment that would work as well as mine has. Close family her daughters and sister made her time left as enjoyable as they could and my cousin seemed to come to terms with finding the positive in every day left.

I can not tell if you are after some hope that the dr is wrong and need help seeking a second opinion, or need help moving forward with making the best memories out of a horrible situation. I’m sorry you’ve had to wait so long for a reply, and I suspect I’ve not exactly given the sort of reply that you may be looking for. I wonder if the Macmillan support line could help you talk through how your feeling, and offer any help with what you are seeking. 0808 808 0000 is open 7 days a week 8am to 8pm.

Best wishes

Hi KTatHome,

I came across your message and I hope you don’t mind me writing! I’m very interested to hear your story as my dad recently had a biopsy done as they thought what they were looking for was lymphoma however results were back last week and confirmed it was infact cancer of unknown primary which came as a massive shock to us all. We had a chat with the nurse after who explained all she could and that treatment is a option which is available but have to be generally fit to be able to have it - which she confirmed he’s able as he is perfectly fine in himself all this come up from a general appointment at the doctors about back pain. But we all left the hospital that day thinking this is it, the end. Which is very frustrating as like I’ve already said my dad has nothing wrong with him no weight loss (infact he’s put some on every time), no tiredness, loss of appetite nothing! 

He had a visit yesterday by supportive care team which may I add have gone on about treatment that much and how bad it is and isn’t worth it that he’s now got it in his head it’s a waste of valuable time. 

We are waiting now to go back for our appointment with the new specialist that deals with CUP next week to hear it all from him regarding what they think,prognosis, treatment options and then at the end is he choice to decide treatment or not. 

Thank you and I hope you don’t mind the message! 

X

Hi , for me I had become increasing unwell between April 2015 and July 2015, my Mother had passed away so I thought it was just stress and anxiety. Having seen the dr a few times because I was loosing weight, felt nauseous and weak, the last symptom was a lemon sized lump that came up on my pant line. I googled thought hernia and went to see the dr again, and she referred me to A&E to see the surgical team. I was admitted to hospital and had scans done and lymphoma was suspected as so many nodes were enlarged. They did a fine needle biopsy and 2 weeks later the results suggested melanoma I saw a dermatologist within 24 hrs to try and fine a primary, she was unable to find a primary and the nurse said I would be discussed at an MDT with a CUP representative to make sure I didn’t slip through any nets. I was referred to a palliative care team as I was not yet receiving any cancer treatment but was on tablets for nausea and just paracetamol for pain. They visited to talk me through what was available to help me further down the road, and if I needed increased pain meds, that they had a 24 hr number rather than a locum GP. Leaflets about the local hospice, they arranged an appointment with a Macmillan benefits adviser. 

I was told the pathology of some cancers are very similar so an eye exam was arranged and further biopsy tests were done on my sample, an endoscopy was also mentioned but not done. In the mean time I saw an oncologist and was put on steroids to improve how I felt as if I wasn’t well enough no treatment was going to be given. Further results came back with a positive BRAF result and so treatment for me then started on a targeted therapy Dabrafenib which I was told would last on average for 9 months. I was given a prognosis of between 6 to 12 months. I was no longer considered CUP but metastatic melanoma and I was lucky that when at 9 months cancer spread to my ovary an immunotherapy treatment Pembrolizumab had become available on the nhs. Within 6 months no measurable disease was seen on the scans. At 12 months I stopped treatment and remained clear for another 12 months. I started treatment again in June 2018 when scans showed a return, one node has resistant so I have had surgery to remove that in March, and Pembro continues every 3 weeks until March. I’m still no evidence of disease and the hope is that the immunotherapy will have done its job this time and will keep the cancer away and I will have a normal life span. 

So I’m not a true cancer of unknown primary as the biopsy and reaction to treatment has let them decide that my cancer is not unknown but was melanoma, possibly from childhood, I must admit I sometimes wonder about blood transfusions I had during childbirth. But it is what it is and things are going good for me at the moment but not as good as if this whole scenario hadn’t happened. I’ve known what it’s like to think Xmas 2015 would be my last Xmas and that I wouldn’t get to my 60th birthday. I’m still on 3 monthly scans and looking forward to March and stopping treatment. I know that if at any point it does return there is other treatment that is available for me, treatments are improving all the time. 

I hope this info is useful for you and I hope the appointment goes well for you and your Dad. 

Hello,

Thank you so much for your reply!! I really appreciate it. 

So can I ask, was it originally unknown primary which later after treatment started the primary was found?

I just hope there’s some positive to this as it’s been a nightmare. He is worried about having treatment due to side effects etc which hasn’t been helped by the supportive staff scaring him about how ill it will make him.

Thanks again and I wish you all the best! 

Xx

Hi , my primary has never been found, It’s assumed that my body’s own immune system dealt with it. At first I felt it scary that no primary was found, then I got used to the idea that I couldn’t have surgery to take it away, but that either my body had dealt with it or the targeted therapy treatment or immunotherapy treatment works on the whole body and so it was being dealt with. The microscopic pieces that had broken away to go grow in my lymph nodes and ovary have been dealt with and the drugs are still working on any other microscopic pieces ( if there are any) that can’t been seen on a scan but that could potentially grow into another tumour. 

Having no primary found isn’t the same as remaining cancer of unknown primary is how I understand it, as they have diagnosed the cancer as melanoma even though no primary melanoma was found, the cells in my lymph nodes matched closely to be confirmed as melanoma.

Im wondering if you have read the Macmillan information and support sections on CUP and wether they will help you.

https://www.macmillan.org.uk/information-and-support/unknown-primary-cancer

best wishes

Hi 

We I've had a year off all treatment but unfortunately the tumors on my liver are growing again 

They still can't find the primary and are going to put me on Carboplatyn as the Oxyplatyn caused serious Neuropathy especially in the feet so it feels like I am walking on powdered glass 

I feel not too bad in myself and try to be positive but do get very tired Hoping there are no bad side effects with the Carbo 

Stay strong 

Cheers 

Geordiepatriot 

Hi 

We I've had a year off all treatment but unfortunately the tumors on my liver are growing again 

They still can't find the primary and are going to put me on Carboplatyn as the Oxyplatyn caused serious Neuropathy especially in the feet so it feels like I am walking on powdered glass 

I feel not too bad in myself and try to be positive but do get very tired Hoping there are no bad side effects with the Carbo 

Stay strong 

Cheers 

Geordiepatriot 

Hi  , I know when I had a year off treatment I had mixed feeling, I wanted to start treatment ASAP, but also so disappointed that I had to start treatment again.

wishing you luck with your new treatment, when do you start it ? 

Start Friday   It's only a half hour input as opposed to the Oxyplatin which was two hours plus 

Cheers 

Hi,

you may of seen my previous messages. After further appointments still no primary has been found however further testing on the original biopsy from the lymph node shows it’s a adenocarcinoma. 
treatment is ready to be started which is a combination of EOX if anyone has any experience of this? however due to bone scans now showing several places including both hips they are priority so treatment is on hold. 

thanks