Is CUP a death sentence?

Hi PAJ,

NO IT IS NOT - and I do mean to shout

I was like you and was told it was defiantly not a death sentence.  Despite the lack of activity on this particular forum it is not an uncommon occurrence, but realistically most cancer primaries are found.  I have worked in cancer so hear from the clinicians.

My H&N cancer was detected in the lymph nodes.  They took out lots of bit of me looking for the primary and following down diagnostic trails, but did not find it.  After over a year they visually noticed something in my tongue that I had not and biopsy confirmed the primary.  Tiny (many H&N are, but no less dangerous) and still not showing on scans.  When they went to remove a chunk of tongue with the primary in it had gone!

I am nearly 2 1/2 years from initial diagnosis.  5 operations later and I am fit and well doing everything I want to in life.  I still religiously go for my 2 monthly checks as that is my safety net.  If it rears it's head again we will deal with it.

Depending on your clinical presentation your consultant may recommend radio or chemo or both to deal with the cancer cells.  In my case we are keeping those options in reserve for round 3 - if that ever happens!

CUP is worrying.  There is no denying that.  But you have to live your life, for you, your family and your friends.  Always be aware of changes to your body and if in the slightest doubt get your clinical team to check you out.  I've done that a number of times - all false alarms - but never have I been told I am wasting their time.  Never miss a check up - it is your essential safety net.

Live life in the rays of the sun.  You have been given an opportunity denied to so many over the last couple of years.  Try not to be scared.

Thank you Peter.  Sorry it’s taken so long to get back to you.

I’ve now been accepted onto a Pembrolizumab drug trial and this is being dealt with at The Royal Marsden in Surrey.  This can support an improvement in your own body’s immunity in fighting the cancer.

ive also had a second option at the UCL in London. The consultant there was much more positive about my prognosis.  Whilst still serious and life limiting, he felt that the low volume of cancer I have and the type (squamous cell) can and should respond well to treatment. I should certainly live longer than the 9-12 months and could even beat it. He thought the drug trial was the right way to go before chemo and he made me much more confident about approaching all of this.  Think The Christie’s need to go back to school for bedside manner lessons!

im so disappointed with the CUP team at the Christie in Manchester. Very negative and downbeat and certainly not proactive. I had to ask them to request going on this trial.  If you’re not happy with your team - it’s certainly worth getting a second opinion!  It’s a shame because so many people I know that have had cancer have raved about how brilliant they are. Maybe I just got the weak link?

Second scan shows no further spread and nominal growth. Quite pleased with this!

I will follow your advice and stay positive and not just look for a ray of hope but a great big deluge!

Stay well my friend!

Sounds good.  Keep us up to date with how it progresses.  Where abouts are the secondaries?  It may be good to join a group that is related to the area where they think it is.  I know a few are on Pembrolizumab immunotherapy in the H&N cancer group...

Hi everyone. I am new to all this.

My mum has been diagnosed with this rare cancer CUP- she has 3 big lumps on her body and one popping out on her leg.
Mum is almost 66 and I am 30. I am her one and only daughter and can't imagine my life without her. I am scared and all doctors, consultants are so negative saying CUP is incurable. I am devastated...

She is starting radiotherapy on her 3 lumps on the 14/03 although cancer is incurable but apparently this will help reduce pain and reduce lumps getting bigger.

I am scared, but hopeful... hopeful these treatments will help.

We are in Glasgow and today we were at the Beatson. 

I need some hope, advice, whatever you can give.

CUP is a rare, but I see a couple of you are going through this.

Hope to hear from someone.

Jess.

Hi Jess,

really sorry to hear about your mum. It’s natural to feel scared and lost.

I was told 2 months ago about my CUP diagnosis and a prognosis of 9-12 months. I too was shocked at the level of negativity and doom and gloom.  Also shocked at the lack of bedside manner and support. e.g. what can I/they do to prolong life etc..

In the last eight weeks I’ve learnt a lot and it’s a shame you have to do this on your own when you’ve got a rubbish team behind you.

CUP is not a type of cancer it is just a generic term that means they don’t know what the primary is and the prognosis is based on the average of a small number of people.  I’ve found that the range of life remaining from the point of diagnosis can be from a couple of months to 7 years plus and even some where the primary is found and cured (rare but possible).

For what it’s worth, here is my advice.

1. Breathe - there is time

2. Ask for a second opinion - it’s common and doesn’t offend your existing team. I’ve learnt so much more from this process.

3. Ask about trials. Or look for them on sites like Cancer Research UK. I’m on 2. The first is looking at trying to find the primary through blood samples and biopsies. The second is by taking Pembrolizumab that aims to extend life through enhancing the immune system, preventing growth and preventing spread. Between 3 and 4 out of 10 have a positive experience from this. There are and will be other trials.

4. Talk to others. In waiting rooms. Online etc. Learn from others experience.

5. Everyone is different. One prognosis does not fit all, one consultant told me he had a patient on his books with CuP that has had no treatment and minimal growth that is still going strong. Don’t put too much faith in CUP cancer stats. Your mum is a person not a stat!

6. Stay positive. The biggest weapon against cancer is positivity, try and keep Mum fit. Exercise and diet.

7. Look at supplements, I take manuka honey. Resveratrol. Cod liver oil. Vitamin D and Citrus Pectin. You may come across others. Do they work? I don’t know but at least they make you feel like you’re doing something positive.

8. Keep going. Live for the day and don’t look too far ahead.

9. Remember that we’re all terminal. Concentrate on living rather than waiting to die.

10. Love your mum, continue making memories and breathe.

I hope in time your confidence grows and you have some more positive news over the coming days.

I’m saying a prayer for you both.

best wishes

Peter

Paul- you are a star! 

Thanks a million for all your advice!

Mum is going in for a treatment plan on Wednesday and on Monday 14/3 she will be going for radiotherapy, x 5 sessions.

After that we are going to be referred to a Dr that is specialised in Cup.

We are fed up hearing bad news- also if mum has an incurable cancer, why do we need to wait days for her treatments? surely they need to speed things up?

I will definitely mention TRIALS.

Mum would love to exercise, but she has a massive lump under her arm, x 2 on her tummy and one might be growing on her leg.

She would love to go back swimming, but that is not an option ATM.

It's inexplicable how all this is happening to her and there is no cure, no hope from doctors.

All these lumps growing on her body. She is sore.

I am hopeful that the radiotherapy will help.

How does it work Peter? Do we ask to take part of trials? Or do we eventually get offered them?

Also you mentioned to ask for a second opinion - Who could we ask? Another cancer hospital or what?


Good luck to you also Paul, we gonna all fight this and W I N  !!!

No probs.

ask your existing consultant to refer you for a second opinion. It’s common and natural to ask for this. Your consultant won’t be offended.

don’t wait to be offered trials. Look on cancer research uk and ask your consultant about them and can you be referred if you are interested. Ask the consultant at each visit if they are aware of any new trials too.

Understand that exercise might be tough but keep her mind focused and upbeat. Being outside and seeing life helps. Don’t concentrate on what she can’t do but do what you are able to do. We are stronger than what we think.

Peter

Jess, good advice from Peter.  As he says CUP is just that they do not know where the primary is.  But they probably have a good idea.  I was CUP for over a year before they found a cancer that they thought was the primary only for it to disappear again.  I am now 2 1/2 years into this journey and all things considered living a good life.  Fingers crossed for your mother.

Hi Peter, 

Thanks for all your advice.

I feel comfort when talking to you guys, both you and the other Peter.

When speaking to consultants, radiotherapists, we just get reminded that mums cancer is INCURABLE, no hope, nothing at all.

I am so upset after our experience on Wednesday, we got referred to a big cancer care centre, we were supposed to see an oncologist but she wasn't there for some reason, instead we see some consultant that is not yet an oncologist.

He asks about mums general health, if she is a smoker, when did she find out about her lumps etc, then he examines the lumps and calls the radiographer in, he has a look at the lumps and says- OK WE GONNA DO RADIOTHERAPY BUT THIS IS MORE TO RELIEVE THE PAIN AND TO MAKE LUMPS SMALLER- YOUR CANCER IS STILL INCURABLE, HAS SOMEONE TOLD YOU THAT YET?- both me and my mum were shocked, radiographer then left the room by saying - OK LEAVING YOU BACK TO THE CONSULTANT NOW.  

Nobody there to support us, I feel that the consultant was getting fed up even listening to us. 
No nurses, nobody around to give us some light.
We just get told that someone will be in contact to get you booked in for radiotherapy.

That was our experience.

I had a panic attack that night, I needed to be strong for mum but instead I panic, my heart starts racing, did not sleep and cried all day/night, was sick all night etc ... not what my mums needs to see, I NEED TO GIVE HER STRENGH, I AM ALL SHE HAS IN HER LIFE ! 

Then today one of my mums lumps ( she has 3 in total ) starts leaking, I call the cancer centre and guess what? They are closed at weekends as if cancer stops at the weekend !!! 

Fed up staying on hold on the phone, I drive us to cancer hospital and its CLOSED, so I take her to the department where she initially had her CT scans done and we find a kind cancer nurse, she takes mum into a room and covers mums big lump with some dressings. 

I have not been given any out of hours numbers, nobody to contact in case of emergencies etc, my mums lump was leaking and I had nobody to contact! 

They just keep repeating themselves, cancer is incurable but NO HELP GIVEN. 

They don't even give basic info out like- what radiotherapy is for, what to expect, no basic information given to us, NONE. 

I need to search for all the basic info as our consultants are just too busy reminding us that mums cancer is incurable ( basically reminding us she is a lost case ).

It might be incurable (for now) but it’s still treatable. You should have been given an out of hours number to ring. Get your team to give you this. You’ve always got 999 if you have no joy.

your experience sounds so similar to mine. The negativity is dreadful. I’ve found Macmillan’s supportive and encouraging. It’s worth trying the Maggie’s Centre too.

Hopefully a different consultant will be more proactive in their advice and support.  There are some good people out there and you will find them in time.

Don’t forget support for yourself too. 

there is still hope. Don’t give up. Look for ways of extending life.  We’re all terminal.  We have to accept that. What we don’t have to accept is people giving up on us and there negative attitudes! Keep on living and fighting. It will get better in time.

God bless you both x