Is this CUP group still operational. I have CUP but have never met a single other person with the condition. It makes for a very lonely existence at times.
Hi David, I was diagnosed with Squamous Cell Carcinoma in the neck of Unknown Primary in June 2020. I underwent 30 rounds of radiotherapy and 2 of Cisplatin chemotherapy which finished in August 2020. Following my 12 week post treatment PET scan it was confirmed that there were no abnormalities in the area treated and I am now being closely monitored for the next 5 years. However as much as it was explained to me right at the start that my body’s own immune system might have dealt with the Unknown Primary or that it was so minute it has just been absorbed does not make it any easier.
Hi Carol. Thanks for your reply. When I initially showed a good response to chemotherapy I was also told that my body’s own immune system may have seen off the primary source. Indeed such explanations don’t make it any easier at all. Best wishes. David
My husband has just been diagnosed with CUP last week. His cancer is in his abdominal lining. They have scanned numerous times but found nothing. He’s had chest X-ray, colonoscopy & endoscopy again they found nothing & all his blood work is normal. Very frustrating as it’s taken about 9 months to get a diagnosis but it still doesn’t really help as so many unknowns. The tumors were found through surgery. He had been unable to eat normally for a few weeks & finally he saw a consultant who admitted him for emergency surgery. We have now found out the reason for the surgery was because they thought he had a blockage in his bowel. They found tumors in his lining around his bladder, in his pelvis & around his bowel. There are a few but we’ve been told they are small. When they took a biopsy they removed the part that was almost causing an obstruction of his bowel & he’s been able to eat normally.
He is starting chemo in 2 weeks & they are treating him with drugs used for treating bowel cancer, I can’t remember the name. He is currently still working although he does have days where he is in more pain than others.
I found a page on this site which explains CUP. I’ve been sending the link to people as it can explain much better than I can!
it’s just frustrating that even after chemo finishes we will have no real way of checking to see if chemo has had any effect. I guess it’ll just be how he is feeling.
Many thanks for posting this contribution. A common theme of this illness is indeed the uncertainty of everything. I don’t have personal experience of other cancers but I do know that CUP has left me mystified along with all the other upsetting elements of having cancer. Every best wish to you and your husband.
Hi my sister has Cancer of Unknown primary. It seems to be affecting her liver but they did a biopsy but they couldn't find the Primary there. She has got a 'few months' left according to doctors and won't see Christmas. She hasn't been offered chemotherapy as the cancer is to far gone. She is at home at moment and wants to die there. She can't eat because her throat is swollen (cancer is also presenting as gastro) and is on high doses of morphine. she can barely walk and will being having a 24 hour home care plan instigated as soon as possible. Her rapid decline has happened very quickly over the last 3 months. How advanced is your cancer?
I too have cancer of unknown primary. Mine was diagnosed last October and I’ve had chemotherapy for six months. It is the very nature of CUP that every patient is different, with different secondaries showing in various parts of the body. I had secondaries in my lymph nodes and not in any major organs, although at some point may well appear, it’s something CUP patients have to live with. My cancer as of today has no name or details on how advanced , after chemo treatment I have no cancer showing. With your sister I can only assume that the cancer they have found possibly aggressive hence her rapid decline . I’m unsure what else to say. I’m so very sorry you and your sister have been affected by this awful disease which is impacted even more because we have no idea where it actually is. Everyone is different and every reply will probably be different. Please feel feee to ask any more questions and if you need to please message me.
It is all very tough & rubbish. My husbands cancer is in the abdominal lining. As with Yogamad we haven't been informed as to whether it has a name nor did the oncologist offer information as to what stage it was or whether it was aggressive or not. She also said that she would not offer a prognosis as there was so little information about what they are dealing with. My husband is being treated with bowel cancer chemotherapy medication. He is coming to the end of his 2nd cycle & none of it has been easy.
He has been really floored with no energy. In cycle 1 he was in pain & eventually contacted his nurse the day before he was due to go in for his 2nd drip infusion. They got him in for an X-Ray to discover he had a lot of faeces built up in his intestines so they changed the laxative he was on. We started cycle 2 feeling more positive feeling that the new laxative would prevent the problems on cycle 1. He started off well & was able to put on a little bit of weight but he hasn't been well since Wednesday. He wasn't able to get in touch with his nurse over the holiday but spoke to her today. He said that it he felt like he was being poisoned. He was also sick last night which is the first time he's been sick during his chemotherapy. The nurse told him to finish his chemotherapy tablets (today is his last day) so he took them this morning only for her to call him back 30mins later to tell him not to take the tablets. That was a bit annoying because before he took the medication he was feeling the best he'd felt in the last 5 days.
The nurse did tell him that people don't usually put up with what he has been going through & it doesn't sound right. My husband just thinks he needs to put up with everything & get through it.
The oncologist is in tomorrow so will call him sometime tomorrow but the nurse has told him to be prepared to go into the clinic. Trying to keep so many thoughts out my head at the moment & stay positive.
