adeno-CUP-syndrome

Hello.

I was diagnosed with a secondary tumor at the beginning of October.  The Tumor which as far as I can understand is situated on the 10r lymph node and is about the size of a large conker. 3.6 x 3.6 x 2.7 cm in size.  The primary tumor at this time has not been found.

I have had nunerous CT scans, MRIs and various other scans including scintigraphy. 

I am due to be considered for a pet scan this Monday.

I have a few questions which I am having difficulty in understanding and coming to grips with.

1.  After all the scans and weeks in hospital and still no primary cancer found is it worth having a pet scan.

2.  At what stage does a cancer become CUP.

3.  Is CUP curable, without finding the primary.

4.  I also have Gold III COPD and advanced emphysema, will this affect whether I can have chemo or rad therapy.

I sorry to ask so many questions but although English I live in Germany and although I speak German my understanding only goes so far, and its all a bit overpowering.

  • Hi ,

    Thanks for getting in touch. It sounds like you’re going through a lot at the moment and it must be a worrying time waiting for results.

    It’s normal to have lots of questions when you’re first diagnosed with cancer. It may help to write down a list of questions to ask for your next appointment.

    A cancer of unknown primary (CUP) can mean that you need to have lots of different tests to find the primary. This helps your treatment team to find the best treatment options for the type of cancer.

    A PET scan can help to show where a cancer is in the body and helps your doctor see if it’s spread elsewhere. It can help with staging and again is used as part of treatment planning.

    If after further tests and investigations, the primary is still not found it would be classed as a CUP. Treatment is usually aimed at controlling the cancer and managing symptoms.

    When planning treatment your team will look at your medical history and also what the national guidelines are for treating your type of cancer. They do this as they want to make sure treatment doesn’t cause more harm than good.

    You mentioned that you’re based in Germany. If you are struggling to understand what the doctors are saying, (sometimes it can be confusing when medical terms are used) ask to have a translator at your appointment so you fully understand what is going on and why. It may help to have some written information about your diagnosis for you to refer to. You can ask your team to provide you with this.

    German Cancer Aid may be able to help with local support so we suggest getting in touch with them.

    We have a supportive unknown primary cancer group on the online community. Sometimes it can help to talk to others going through a similar experience.

    Take care,

     

    Mandy

    Macmillan Cancer Information nurse

  • Hi

    Thankyou for your reply.  Most helpful.  I am scheduled for pet scan on the 19th, but my specialist has re reveiwed my last CT and has found a few (shall we call them) additional points of interest, one being on another lymph node.  

    Can i just ask about chemo and radiation therapy, in general.  Does having COPD and advanced emphysema affect if an individual is suitable for either chemo or rad therapy.  Are there any attendant dangers. 

    Thank you again 

    Bob

  • Hi Bob()

    Thanks for getting back in touch with us. I’m glad that you found Mandy’s previous reply helpful.

    It’s common for specialists to request further tests when they find additional points of interest when they review scans. They are not doing this because they think that they are definitely related to your cancer diagnosis, but they are being prudent and want to make sure that they are not missing anything.

    However, we know that waiting for further tests can cause anxiety. Callers to our Support Line tell us this all the time, it’s the uncertainty and the not knowing that makes things worse.

    It’s understandable why you want to find general information about chemotherapy and radiotherapy so that you can prepare yourself. It’s also natural to want to know if having COPD and emphysema will influence whether doctors would recommend that you have treatment and if it was potentially dangerous.

    Here in the UK decisions about treatments are made by a team of experts, who will look at your medical history as well as the national guidelines to make sure that the treatment doesn’t potentially cause you more harm.

    Chemotherapy uses drugs to treat many different types of cancer. We have this general information to help you understand chemotherapy and the potential side effects. It can increase your risk of developing an infection. Having a background of COPD and emphysema can also make you more prone to developing a chest infection, but only your doctors would be able to discuss the potential risk to you.

    The doctors will want to assess your COPD and emphysema prior to starting treatments such as chemotherapy as they may affect the lungs. But this depends on the drugs that they recommend, and they would normally want to have input from your respiratory doctor about how your lung functions.

    If they think that you should be able to tolerate treatments they will need talk to you about the benefits versus the risks before you sign a consent form.

    In general radiotherapy is a local therapy aimed at the area that the doctors want to treat. Possible side effects will depend on the area being treated, the type of radiotherapy and other treatments you may be having. Only your doctor will be able to give you specific information about whether your medical history will influence their decision to give you radiotherapy and what the potential risks to you might be.

    It can be helpful to prepare questions to ask your doctor, we also have this further information that can help you to think about what you may want to ask.

    Best wishes and take care.

    Ellen-Macmillan Online Digital Nurse Specialist.

     

    .