Cancer of unknown primary

Please never give up hope.  I was given 2 years to live, had one chemo and one radiotherapy session which didn’t shrink my secondary tumour but I’m still here 11 years later and feeling ok even though I now have neuroendocrine tumours in my liver.  Apparently I am not unique so I hope your husband proves the oncologist wrong too.

Hi Doreen,

Just these kind of comments give me hope and I've got to hope for the best and not expect the worse or I will loose all quality time crying and not trying to enjoy life. 11 years is incredible. I've passed this onto my Husband as some form of hope for him. I think with time this will sink in and we can learn to live with cancer but at the moment just very new and scary. 

In a way it’s worse for you as you feel so helpless.  My husband didn’t feel as positive as I did! xx

Oh, forgot to say .......  If your husband feels well enough, do all the things you’ve always wanted to do.  We blew all our retirement money on cruises and are now penniless!

Dear Sheilaj, so sorry to read of your husbands diagnosis and prognosis. I am on this journey with my husband also. We had not heard of CUP until he was going through the diagnostic phase over 2 years ago now. My husband has exceeded his original prognosis and is currently mariculously enjoying a phase of stability. Currently nearly 9 months stable - we never expected this, his life insurance paid out a few months after diagnosis so the picture painted to us was one of doom and gloom and still is. The last few years has been quite a journey. You must be in shock at the moment and reeling from the news you have received. I wish your husband all the best with his treatment and hope he exceeds the prognosis of time you have been given as my husband has. Take care

Thank you so much for the lovely reply it has given me some hope which is what I’m clinging onto. He is due to start first chemo within a week so let’s see how he tolerates this and hopefully it can restore some quality of life for him.

Thank you so much for the lovely reply it has given me some hope which is what I’m clinging onto. He is due to start first chemo within a week so let’s see how he tolerates this and hopefully it can restore some quality of life for him.

Hello Doreen C, 

I came across your message and I hope you don’t mind me writing! I’m very interested to hear your story as my dad recently had a biopsy of the lymph node next to his kidney done as they thought what they were looking for was lymphoma however results were back last week and confirmed it was infact cancer of unknown primary which came as a massive shock to us all. We had a chat with the nurse after who explained all she could and that treatment is a option which is available but have to be generally fit to be able to have it - which she confirmed he’s able as he is perfectly fine in himself all this come up from a general appointment at the doctors about back pain. But we all left the hospital that day thinking this is it, the end. Which is very frustrating as like I’ve already said my dad has nothing wrong with him no weight loss (infact he’s put some on every time), no tiredness, loss of appetite nothing! 

He had a visit yesterday by supportive care team which may I add have gone on about treatment that much and how bad it is and isn’t worth it that he’s now got it in his head it’s a waste of valuable time. 

We are waiting now to go back for our appointment with the new specialist that deals with CUP next week to hear it all from him regarding what they think,prognosis, treatment options and then at the end is he choice to decide treatment or not. 

Thank you and I hope you don’t mind the message! 

X

Hi There, Sheila J here,

As you've probably my husband was diagnosed with Cancer which was to say the least a shock as we just though he had stomach infection and they told him life expectancy was 6 - 12 months. They suggested Chemo but as there is no Primary cancer then they just give him a mixed chemo in the hope that it targets some of th secondary tumours. Well he had it and OMG nearly killed him, He had infusion on day 1 and then 2 weeks of chemo tablets. The sickness and diorreah were relentless he lost a stone in 2 weeks and at one point he had nurses coming in every 2 hours injecting him for nausea. You have a helpline which I was on constantly to be told it was normal. Eventually when a McMillan nurse came out she called an ambulance and he was admitted immediately and put on a drip for 5 days. As you can imagine our thought were "No More" anyway he had another MRI scan and saw a consultant who put him on steroids for 2 weeks and the change in him was dramatic, he ate like a horse put on his stone and re built most of his strength. He was determined not to have round 2 but on seeing yet another consultand he told him that the MRI had shown improvement in the secondary cancers and recommended that he go for round 2 of chemo on a 20% strength reduction and monitored more closely. He is now on day 11 of 14 and although he has seen a dcline in his health there has been no nausea or diorreah this time it's just taken it out of him. When this finishes we will ask for another break and steroids again and if he can build himself up then he will attempt round 3. So basically from our experience its got to be worth a go if it attacks something that is going to give him increased life.

We were told that the Chemo concoction he was given is a particularly harsh one as they don't know what they are aiming it at as there Is NO primary cancer.

Got to be worth a go for your Dad I would say but if you asked me that during round 1 I would not have given this answer so just be prepared for the worse and if he gets away lightly then that would be a bonus.

1 tip is get community McMillan nurses in they are an awesome support.

Always here if you have any further questions or just want to chat as although it's not me going through it I feel as if I am as you will be supporting your dad.

Hope this helps and all the best in whatever decision you make

Sheila J   

Hi Sheila. J

Your Dad's experience sounds similar to mine No Primary found so they targeted the Secondary tumors on my liver 

The first Chemo sessions went OK as did the second two but the third one hammered me I dropped from 13 stone to 9stone in a fortnight 5days in hospital on drips only no solids Pleased to say I am reasonably fit again but very tired and have been off Chemo since last November

Recent CT scan is showing growth of tumors again so I am starting Chemo this week 

As the original treatment (. Oxyplatin) gave me Neuropathy they are trying Carboplatyn this time The Oxyplatin although very harsh reduced the tumors from 180 to 90 so it did the trick up to a point So back in the hands of those wonderful nurses and assistants and see what the future holds Watch this space 

Cheers 

Geordiepatriot