Is CUP a death sentence?

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Hi Everyone,

I was diagnosed with CUP 6th Jan.  The secondary cancer is within 4 lymphs.

Everything about CUP seems negative, I.e. incurable, treatment is redundant, 9-12 months to live etc

should I resign myself to die or should I be fighting this? Does anyone survive this? Does a primary sometimes show up? Does random chemo sometimes get rid of the cancer?

Im normally a positive person and looking for a ray of light. Is there one?

thank you to anyone that can help.

  • Hi Jess,

    Your story sounds so terrible.  Maybe I am lucky but that is not my experience of the NHS and both my local hospital and my tertiary hospital.  It may be that the cancer is advanced and as such is incurable irrespective of if they can find the primary or not.  Thus they are offering palliative care to relive you mother's symptoms.  That does not mean that her life is immediately terminal.  There may be much more she can achieve once they have the symptoms under control.  I think they keep reiterating that it is incurable because it is a massive step to overcome to understand that fact.  But, I repeat, that incurable does not necessarily mean immediately terminal. 

    I can't speak for the Scottish NHS, but here I would expect to get a number for my CNS who I can speak to in a reasonable timeframe, and I would expect to be advised to go to A&E if I got into your mother's state.

    I think it would be worth engaging with Macmillan helpline and any local cancer charities.  I would also be looking for support on one of these forums closer aligned to incurable cancer.  Having said that, stay with us on here for as long as it helps but the advice on other forums may be more experience based.

    Go and see your GP as you need some help.  Carers are often the ones that suffer the most in all of this.  As patients we have a degree of control.  As a carer you are "along for the ride" waling a tightrope between wanting to do what you think is right (maybe for you and not your mother??) and what you mother wants.

    We're here for you.

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Peter
  • Hello Paj and everyone! My son was diagnosed with CUP more than a year ago. It appeared first in the cervical spine, then after 7 months in the dorsal spine and now there’s a new small one in the lumbar area. A very small one. Every tumor disappeared after radiotherapy and chemotherapy but it’s so heartbreaking every time there’s a new one. Dylan is only 22. They tried to make a biopsy with the tumor and there was not enough sample. For his first tumor Dylan needed an operation . Now I managed to find , after calling and threatening the lab , a second an final sample hopping this time is going to be enough material to do a genetic testing. I wanted to ask you if you were put in this trial after having done a genetic test. I’m so worried about my son and the possibilities of treatment for a possible new tumor!! It looks like if the genetic exam can’t be done there are not many options. We live in Marbella, Spain and we are happy with the oncologist and till now the treatments but I would travel anywhere if needed. We lived in London for 10 years . Thank you all 

  • Hi Monica and welcome.  Unfortunately this particular forum is little used, but I hope someone can at least attempt to answer you.  I have a Head and Neck cancer which has not spread outside the lymph nodes so I really cannot answer your specific question.  All I can say is that I hope you son gets the treatment you and he wishes for and that it is successful.  Thinking of you and he.

    Peter
  • Hi Peter, thank you so much for your answer. Until today I felt we were the only family in the world dealing with this. All around us people are worrying about what it’s seems unimportant problems. Jobs, money , couple, etc. when we are submerged in a nightmare. But coming back to the treatment. I thought I read you were in different trials ? I don’t know if it was you that were on Pembrolizumab? Do you know what it’s needed for have this treatment? 

  • Hi Monica. I’m so sorry to hear about your son. My name is also Peter. Pembrolizumab is an immunotherapy drug that is currently used on other cancers such as bladder cancer. The Royal Marsden is currently running a trial to see how this can help those with unknown primary. I’ve just had my second dose yesterday. It won’t cure the cancer but there is a 30-40% chance it can stop the spread, stop the growth and even minimise the cancer. There are other immunotherapy drugs under different brand names that can work too. I live in Manchester but travel down to London for my treatment. I will have a CT scan after the fourth dose to see if it is working. I qualified for the trial by looking on cancer research uk website for cancer trials and asking my consultant to put me forward. Worth asking your consultant about how to access immunotherapy drugs as well as doing some internet research on trials. I’ve spoken to several other CUP patients like me that were given 12 months to live, but for those who have a positive reaction to immunotherapy are still going a 5 years later. The longer we live, the more chances of further treatments can be made available. Don’t give up. x

  • Hi All and Hi Monica.
    My mum was diagnosed with cancer a few months ago and it was CUP.

    My mum has 3 lumps on her body, so I guess that is her secondary cancer.

    Mum doesn't want to know too much about the cancer, where it is, where it has spread etc so I avoid asking the doctors questions related to her cancer.

    What I know is that the doctors haven't yet found out about the primary cancer, although they seem to think its lung, something completely different from your sons cancer.

    At first they treat my mums symptoms, her 3 lumps by giving her 5 days of palliative radiotherapy.

    They don't seem to bothered about finding out the primary, they just want to start treating her. 

    My mum is my best friend, she is 66 and I am 30. It's hard but I am trying to help her as much as I can, I am always there for her.

    We have been to many different hospital appointments, every and each one of them I feel very ill & anxious.
    Only people that are in this nightmare can understand how I feel. My mum is precious and she is my world, my rock.

    Yesterday, we finally meet our CUP specialist. They offer mum 2 options.

    1- normal chemo but only works with 20/30% of the patients. 

    2- A trial ( I have been told there are not many trials for this type of cancer ) - to be part of the trial you need to qualify and there are SOOOOO many criterias. I don't know the name of the trial (its like 4 lines long not one simple word) , we are still reading the paperwork with all the ins and outs of the trial.

    It's tough, I never knew I had all this inner courage, I love my mum to bits.

    Wishing you all the best for your son! 



    Ps- To the other people on this (the 2 Peters) : 
    Are you guys on "normal chemo" or have you opted for the trial?

    Mum is pretty convinced she wants to go on the trial, just hoping & praying she fits in all the criterias that are MANY.

    We need to wait 1 month before she starts with the trial and that's if she qualifies!

    Also, I asked the doctors why aren't they doing more to try find out about the primary cancer, they don't seem to be bothered about finding out , they just want to start treating her, did you find yourselves in the same scenario?


    All the best guys.

    Jess

  • Jess and Monica - to answer your question.  I am not on any trials and have only had surgery.  My cancer was found in the lymph nodes in my neck and they searched for it and took out lots of bits of me as a preventative measure.  This was over 3 months.  Nothing but the secondary was found and everywhere the PET scan suggested turned up negative in pathology.  No cancer target so not radiotherapy or chemo.  H&N cancer radiotherapy is a devastating treatment with very serious side effects.

    After 15 months at a routine scoping my surgeon notices a small lump in my tongue which I could not feel.  A biopsy found that to be a tumour about the size of a grain of rice.  H&N cancers are often very small, but can spread easily.  I went back in to have part of my tongue removed but the cancer had gone...  Again no target so no further treatment - my decision, but the clinical teams agreed.

    So I am a year down the road and still clear, but not knowing if it is hiding in there or not and if they did find the primary in the tongue.  Aside from one scan the cancer has never shown on any scans, but was (is) clearly there hiding.

    If I were offered a trial in different circumstances I think I would evaluate it carefully and probably take it.  If people don't do the trials then treatment never gets better for the rest.  They are the real hero in the global fight against cancer.

    Peter
    1. I’m not on chemo yet. Just immunotherapy for now. Apparently this can have a positive impact  and improved response to the chemo later on. x
  • It’s been a while since I’ve been on here and thought I’d give an update for anyone following my story.

    I was diagnosed with CUP in Jan 21. Started with a lump in groin and found in 4 lymphs areas around the body.

    usual 9 months/12 months to live. Consultant team quite negative.

    i found an immunotherapy trial online for Pembrolizumab at the Royal Marsden. Had this for 4 months and cancers shrunk by more than 50%. Unfortunately this also attacked my lungs quite severely and I was in hospital for a week with severe pneumonitis.  I had to come off trial although what was in my system could still work for up to 12 months.

    CT in Jan showed 2 of the 4 cancers had vanished and the other 2 had stayed the same.

    In March, the 2 cancers in my groin had grown by 50%. Thankfully no spread but cancer is back on the move.

    Just signed up for a new trial called Hare40 (I’ve tested positive for a HPV marker).  Not a cure but may help to stunt growth or spread.

    I continue to look for other trials and treatments. I potentially have a back up lined up but will confirm if this happens.

    im 15 months in and still going strong.  My Consultant at the Christie doesn’t bother turning up to our meetings these days and sends a random nurse instead. My allocated nurse at the Christie has not been in touch with me for over 8 months. Despite this, I’ve learned to push my own agenda. In all fairness the Consultant helped find the latest trial after pushing for action. 
    Treatment should have started in Feb but keeps getting pushed back due to resource issues At The Christie .Fingers crossed things get going soon.

    I’ll keep you updated as to my progress.

    Thanks

    Peter

  • Sorry to hear it is back.  Fingers crossed for the trial.  I totally agree that you have to take charge of your treatment and push when needed to get the right outcome.  If necessary become a pain to the team and they will take notice, after all it is your life at stake.

    Peter