Adenocarcinoma CUP syndrome

Hi everyone, I'm new to the site having only been diagnosed at the beginning of October. 

As you may have noticed I'm also not very good with computers.

What I want from being a part of the group I don't really know, perhaps I just need reassurance, or maybe help with understandibg what the future may hold, or perhaps a bit of both only time will tell.  

But one thing is for sure I'm glad to belong somewhere.

Bob from Balve

  • I suppose I have my first question, at what stage does cancer metastasise and become CUP.

    Thanks in advance.

    Bob

  • Hi Bob, so sorry about your recent diagnosis. In regards to your question I believe you receive a CUP diagnosis when the primary site (where the cancer started) can not be found. This was the case for my husband over 2 and a half years ago. He presented with a swollen lymph node collarbone area,  further testing found it was cancerous followed by more tests and cancer found under arm and upper chest also all on left side. We were told from the start that the cancer found in the collar bone area was not the primary site and neither were the other areas identified in the extensive search for it. They simply could not find it. There for he was classed as CUP but due to the spread they strongly believe the cancer started in the Head and neck area and thus treatment was given with this in mind. Your specialist nurse should be able to answer any questions you have, ours has been a god send. Best wishes to you

  • Hi sunflower and thanks for the reply, . your husband's case sounds very similar to mine, I saw another special yesterday so I could be assessed for a petscan.

    My know my secondary cancer at this time is in my upper chest .

    He reviewed all my scans todate and dropped another bomb shell. They found a couple more points of interest!, .they cannot say if they are cancer untill the petscan etc then they will decide on what treatment if necessary is appropriate

    Like your husband they found something on or in? a lymph node near my collar bone, one on my adrenal gland and one between my shoulder blade in my spine.  

    They are only small and as I said they cannot declare them as cancer until further examination.  Only time will tell.

    The Germans are very careful about committing themselves without good grounds.

    I'm fortunate to have a very good specialists, in a top notch hospital.

    I only hope that one of these new finds are the primary.

    To round things of - One problem I face is that I also have advanced COPD and Emphysema. Which could limit the treatment I may receive.  

    I hope things are good for you,. Again thank you for your reply keep your chin up 

    Bob

  • Hi , my primary was not found but I was able to begin treatment as the biopsy to my lymph node allowed them to decide mine was melanoma that had spread to my pelvic and abdominal lymph nodes, and then my ovary. It took a while to not worry that they had not found the primary, I was glad I read the Macmillan information on CUP it made it easier to accept that it was just one of those things, for me there bast guess was that my body dealt with the primary itself. 

    I saw that you posted in ask an expert and you’ve been given lots of links in your replies which I thought might be useful for anyone new to this group, as it’s sometimes very quiet and I suspect more people read than post (cos that’s what I did for several months in various groups) I hope you don’t mind me putting the link below to help others.

    https://community.macmillan.org.uk/cancer_experiences/ask_the_expert/ask_a_nurse/f/ask_a_nurse/189969/adeno-cup-syndrome?Page=0#1399345

    When is your next appointment for moving forward ? 

  • Hi KT, my next appointment is the week after next for the petscan and the same eeew us the lastest assessment.  It's at that point I should have the road map to the future.  Thanks for your post and I hope things are going well for you.

    1. Bob
  • Hi KT sorry my last reply should be - week after next I have a pet scan followed by another assessment which should say what is to come.  You may have noticed I'm not very good with computers.

    Bob :)

  • Hi Bob, ah it doesn’t matter I sort of guessed what you meant Grinning, I am awaiting scan results myself so I hope your await goes as smoothly as possible. 

  • Hi Bob, I don’t know why but I was thinking of you this morning and that you were in Germany. I wondered if you had come across the group for people abroad, a second group you might find some relevant experience in.

    https://community.macmillan.org.uk/cancer_experiences/brits_abroad/discussions

    best wishes

  • Hi, Well I've had my petscan.  Things are a bit clearer, and at the same time more confusing.

    They have found the primary.  I now officially have lung cancer, I think that's a good thing?, as now they know where it started they can tailor my treatment accordingly. 

    Unfortunately at the same time they found that the secondary tumour on my 10r lymph node has grown to 5.2cm, another 2 cm approx in the last 2 months.  

    I start radio and chemotherapy next week which they hope will shrink the tumour so it can be removed.

    This is where to me it gets confusing.  One specialists say because of where the 2nd tumour is it is inoperable and can't be removed, so I am now waiting to see if another specialist says it can be.

    I honestly just want to know if it cannot be removed what happens then.  The Germans have a saying "Kopf Keno".  Head cinema, and its playing in overtime. To much time to think, and to much to think about.  But stiff upper lip and all that.

    Does anyone know what could happen if the tumour ends up being inoperable.

    Thanks for now

    Bob

  • Hi , I think it is good news that they have found your primary. I forgot to look if you’ve joined the lung group yet, just in case I will put a link into it. 

    https://community.macmillan.org.uk/cancer_types/lung-cancer/discussions

    I did a little search in the lung group using the word inoperable and found there are are a number of people having treatment for inoperable lung cancer, some with radiotherapy and chemo and others with immunotherapy the same drug as me Pembrolizumab. 

    I hope you hear soon Bob what your treatment plan will be, it calms the mind when you have that, or so I’ve found.

    Best wishes