CUP with traces in bowel and liver

Hello,

Like you I have had so many scans colonoscopy gastroscopy etc and unable to  find primary. My only symptom is loss of appetite and random pains not every day in pelvic area. I had 10 weeks of tests and they think secondries are in upper GI. I am waiting to start treatment which involves chemo by line and tablets. Cosultant  said it’s not curable but maybe manageable as it’s slow growing. I feel as if I’m tottering on the edge of a cliff at the moment and just wish they could find the primary as my mind is going in overdrive. Apparently CUP  is quite rare and only affects 3/5% of the population and don’t think as much research is done on it. Hope things go well for you on Friday.

Thanks for your response, that's part of my problem - the unknown, the waiting. I think if I knew for certain what is the issue I could manage better and know where I'm likely to be going. And it feels as if it's been going on for months, with tests after tests although it's only really about 4 months or so for me.

So I completely understand how you feel about tottering on the edge, we just want to know, right? Hopefully your treatment will start soon and will not be too bad. Let's keep in touch.

Hi,

• Hope your app went well on Friday. 
  Im starting my chemo on Friday. Apparently they are going to insert a pic line that stays in (any info on this from anyone would be appreciated) I also have to take tablets at home. To say I am scared and anxious is an understatement! As I live alone I’m so worried about the side affects and that I wont be able to cope on my own. One of my sons and daughter in law live quite near so that is quite reassuring. I just wish they knew where the primary was as every little twinge sends me in a panic thinking it’s spread somewhere else! I know I have to be brave and get a hold on this but I still can’t get my head around that less than 6 months ago all my bloods and tests were clear. If it hadn’t been for appetite loss I wouldn’t have even gone to the Dr.I hope once we both start our treatments we are more likely to know where we are going. Take care x

It went ok but now more questions, and yet another suspected diagnosis that my primary could be GIST (Gastro Intestinal Stromal Tumour) but not confirmed. My onco said I'd need a liver biopsy but no-one has contacted me about it yet, nor has my CNS replied to my email where I'm asking more questions. For now a colonoscopy is not in the plan. So getting more than slightly peeved by it all. Find the bloomen issue and do something, it just feels as if they're playing Russian roulette with me, as every letter and every phone call says something different. I said as much in my email to my CNS so will see her response.

As I understand about PICC lines it's like a Canula put into your arm and it stays there for the duration of the chemo so every time you go for a session you don't need another injection as they just insert the chemo line into the PICC line. You're usually given a sleeve so it can be kept dry when in the shower. So it's a convenience thing and very useful so I understand (never had one but know people who have). So wishing you well for your chemo, will be thinking of you on Friday as I'm sure it's very scary. At least you do have someone living near you, please call on them if you feel anxious when you're alone.

Like you were find and only went to your GP cos of appetite loss, I only started this journey by mentioning my tummy pain to my breast onco. I don't have any appetite loss - might be nice if I did, could lose a bit of weight then!

Good luck, take care. x

Thankyou for your reply. Yes it’s all ifs and buts isn’t it. Like you Ive had no definite answers just that there are secondries in upper GI. I had all the liver  Pet Scans MRI etc but still no primary found.The nurse phoned ahead of my first chemo on Friday. It all sounds so scary but have to give myself a chance. I have to have chemo every 3 weeks and a week off and take tablets at home twice a day for 2 weeks and a week off. The side affects sound horrid and know I shouldn’t think of the worse scenario but can’t help it. I wouldn’t be so worried if I had my lovely husband here with me as know he would have sorted everything. I know what you mean about getting peeves about it we just want to find the issue and the waiting for results and follow appointments seem endless. I live in U.K. in Berkshire. 
Take care x

I’m so sorry you don’t have your husband with you, but it’s amazing how strong willed we can be when needs must. I’m sure he’s looking over you. Take all the help you are offered. Also ask around for any support groups. I think there’s a Macmillan centre in the Royal Berkshire Hospital if you’re in that area of Berkshire (that’s my local as I live just a few miles from there but I usually go to Spire Dunedin as I have insurance through work) but might be Macmillan centres other hospitals too depending where you are in Berks. 
Wishing you all the best for tomorrow with the chemo, will be thinking of you,  and take care x

Hi, Had my chemo last Friday. I had a Picc line inserted that stays in place for duration of treatments. 
All well until walking out to car park where I became very breathless.Staff think a combination of the cold air and panic! It was very scary! Worse side affects so far sensitivity to cold in hands and feet and fatigue.As I live alone I was very worried about possible side affects but nothing I can’t handle at the moment. Have you had any more updates. It seems that there is a lot of mystery surrounding CUP and no one seems to be able to give you any concrete information. 
Keep in touch and take care x

Hi, glad you've had a Picc line inserted, that should make some things quicker and easier but sorry that you had a scary experience but combination of cold air and panic does make sense. I hope the side effects are't debilitating you too much, and that you've got someone you can call on to be with you, or even a 24 hour helpline or guidance number where you can talk to someone when you feel low or just want a bit of company. I have that with my private insurance but haven't felt the need to use it yet due to absolutely nothing happening with me.

Still, still waiting for a date for my liver biopsy, my request originally got lost in some hospital system so now in touch directly with the imaging company who are trying to get a date for the procedure from the local NHS hospital as although I'm doing all my treatment/investigations with private insurance, the radiologist wants to use the NHS hospital because of the procedure type. I'm just so so fed up with all the waiting and although I've been signed off work because of the stress and pain, it's making me feel like a fraud and I just want something done, and soon. My heart goes out to anyone who has to wait, wait, wait - it's horrible.

Keep me updated how you're doing and take care x