CUP

Hi everyone recently joined this group. My dad has just been diagnosed with CUP secondary. I don’t fully understand all of it if I’m honest. It’s all been a bit of a shock and happened so quickly. The doctors have told us it’s not curable and that he has 9 months left to live but if he has chemo maybe 18 months. He’s undecided to have the chemo or not and just wondering if anyone’s had/having or known anybody who’s been through this before, or just general advise. Thanks 

  • Hi , I’m sorry to hear about your Dad, a cancer diagnosis is confusing at the best of times, and more so I feel when it’s seemed sudden and when the primary is a mystery. The first thing I read when unknown primary was mentioned to me was the Macmillan information to try and make some sense of it. I’ve put a link below incase you haven’t seen it and might want to have a read to. 

    https://www.macmillan.org.uk/cancer-information-and-support/stories-and-media/ebooks/understanding-cancer-of-the-unknown-primary

    Back in 2015, I was told I had less than a year and joined a group on here for people with incurable cancer (it’s for patients only) I was glad I did as it put things in perspective that the drs can only make a best guess based on statistics but can’t predict our own sell by date. That your dad might be incurable but from what you’ve said he is treatable. 

    Waiting for treatment to start and for the first scan to see how it was going was a bewildering and stressful time as a patient and can feel even more so as a concerned family member. Your Dad might have already asked what his treatment is going to be like and how it will affect his quality of life. I haven’t had chemo as part of my treatment, I had a targeted treatment then immunotherapy that I’m still on.

    You probably have a million questions and emotions rattling around your head as will your Dad. I’m wondering if a personal guide might be of use, it’s new on Macmillan, if you click on the link below about half way down under the heading get help it asks you to answer 4 questions and recommends some booklets.

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

    I must admit I read and found info on talking about cancer and info on emotions really useful.

    I noticed that you have only joined this group but wondered if you also wanted to join the friends and family group, I’ve put a link below, they might have a different perspective on things their experiences of supporting their loved one going through cancer.

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

    i hope some of the links are of use to you and I’m sure people in this group will help how they can with sharing our own experiences for you if you feel that will help.

    KT 

    What is a Community Champion?

    You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

  • Hi Blondie,

    I completely understand how hard it is to get your heads round it all, once you have the diagnosis.  For me, I just wanted to have cancer somewhere, so I could deal with it, but with CUP that is just not the case.  My cancer is not curable also, but I am on  Folfirinox, as the cancer I have at this time is treatable.  Stay positive and if Dad goes ahead with the chemo, it  sound like it will give him more time with the family.  Today, they can give us wonderful drugs to help with the side effects of the chemo we are on, which makes it easier and bearable. 

    When I started chemo it was a scary, but I quickly go into routine and always prepared myself the day before by resting and staying positive.  Treatment has now become  a way of life for as long as it has to be and my motto is simple  "alone I am strong, together I am stronger".

    Stay strong and positive.

    Irene