Unknown primary cancer

Cancer of unknown primary (CUP) is when cancer has spread, but it is not known where in the body it started from. This is a place for people affected by CUP to get together, ask questions, share experiences and support each other.

cup

catlady18
Posted by

Hi all.  Large ovarian mass removed in February 2018.  Histology suggests original cells from lower bowel. Termed 'likely suspect'.

Colonoscopy, endoscopy, body ct scan and bloods =clear /normal.  Lets all cheer     !                No, -precautionary chemo  ?  I am fit and well. No symtoms, weight is normal.     How can I make a decision based on no informaton?   Has anyone any experience or advice on this?   Much appreciated  x

KTatHome
Posted by

Hi catlady18, I read this post then read your profile and looked at your latest activity to try and understand where your coming from, and I still don’t think I have a grip on where you are at. 

With me I had suspected lymphoma, and then when the biopsy came back it read most likely melanoma, when a dermatologist couldn’t find a melanoma they wondered if the pathology report was wrong and went back to query it as there are other cancers with similar markers apparently she wanted to query if it was one of these. They did further tests on the biopsy for different bio markers and a multi disciplinary team meeting decided that even though there was no primary found that it was melanoma, I was no longer CUP.

Reading your posts and based on my experience this is what I am reading into your story. You had what you thought was a non cancerous cyst in your ovary, but when they did the biopsy they said it was cancerous but not ovarian cancer, and from the markers it was bowel cancer. They checked for a primary in the bowel and couldn’t find it, which could be because your immune system had already successfully dealt with it a while ago. My melanoma also spread to my ovary, and was dealt with as a metastatic melanoma not as ovarian cancer. Therefore I’m thinking for yourself that joining the ovarian group here might not help you as the treatment might be different. 

You have said that you have the option to have chemo or not, and that decision is weighing heavily for you because you feel you haven’t got enough info to go on. Surgery has removed all the cancer they have currently found and presumably the chemo is to increase the chances that you won’t have a recurrence somewhere else. So your next action depends on your attitude to risk, and to how confident you are in your medical teams advice. 

My first thought on this is to ask if you have a telephone number, perhaps on a hospital letter sent to you after you met with the oncologist. If you haven’t got another appointment coming up soon you could ring to ask them to explain your situation again to you, and to advise the pros and cons of the treatment options they have put forward to you, and then ask if they were you which option would they choose and why. 

If you want a bit more clarity before you speak to them or after you’ve spoken to them you could also ring the Macmillan support line 0808 808 0000 which is open Monday to Friday 9am to 8pm. 

I found at first my unknown primary diagnosis really head spinning and confusing and still confusing when it was no longer CUP but a metastatic melanoma its a lot to take in. I hope you find your way through this. Have you posed the question in the bowel group or searched to see if there is anyone else with an unknown primary? That’s another thought for help. Your circumstance must be pretty unusual? With melanoma I think about 5% of people have an unknown primary. 

When do you have to make a decision by? And what decision are you leaning towards? 

Best wishes

catlady18
Posted by

Thank  you for your thoughtful and informative reply!         I am seeing my oncologist on monday.  What should i be asking?  How can i make an informed decision?  They are vague on phrases they use like ' likely suspect',  where is the source- inconclusive, cannot prove its from bowel.  I am in a 'trigger'situation.  Could i be agreeing to an ineffective treatment ?  I clear my head then the questions all start popping up!

KTatHome
Posted by

When I had my diagnosis, I was not feeling like you as I felt completely run down and ill, I think I would have agreed to anything that they said. It helped that one of the consultants was highly thought of and sits on a NICE panel. I hated medical programmes but started watching the series House on Netflix. Every week the main Dr character played by Hugh Laurie had to look at a series of symptoms and then based on probability would either rule things in or rule things out to make his final diagnosis and start treatment. This is a difficult concept dealing with uncertainty, the only thing for certain is a decision has to be made, and the decision will be right at the time that it is made if all available things are taken into account. 

I hope it is helping you writing things down and then reading them back, sometimes that act in it’s self can be a bit more calming, or make things fit into place. 

What should you be asking? You have said in this post, 

They cant prove it’s from the bowel, why ? as nothing was found there? 

Why do they think it is from the bowel? What else could it be? Why do they think the bowel is the most likely?

You have said it’s your choice if you have chemo.

What will happen best case scenario if you do?

What will happen worst case scenario if you do?

What will happen if don’t. 

Which course of action would you regret the most depends on your attitude to risk and belief in your team. 

How aggressive is the cancer, can it be left and make a decision later? 

With me I think delaying a decision wouldn’t help with the anxiety, and it might be for the anxiety that you need to take action rather than leave things to chance? 

I’m sure you do have your own questions and your own way of approaching the appointment, I hope you have time to think things through and have someone to go with you as everything can get too much and in my own experience you can just stop listening, even if you didn’t mean to when your brain has too much to cope with. 

I zoned out in an appointment once and only realised it when I found the consultant reciting Robbie Burns to me, I think I would have appreciated silence more.

I hope my words have helped a little, no one else can really tell you what to do but you can use us as a sounding block maybe to help get your own thought out.

Giving a gentle supportive virtual hug.

VickiLynne
Posted by

Hi Catlady18

KT has suggested that I get in touch with you.

I know very little about CUP but I do know that it is a very stressful and frightening experience to know that a secondary has been found and the are carring out tests to find the primary.

From what KT tells me they are investigating to see if it is a primary bowel cancer.  I am in the Bowel Forum, having had colon cancer in 2011 and will try to support you, if I can.

From what I gather you have very little support from your hospital.  Every cancer patient should be given details of their Cancer Specialist Nurse or Key Worker.  The problem is that most hospitals see very few CUP patients and don't have Cancer Specialist Nurses or Key Workers solely dedicated to CUP patients, BUT you should  be appointed to a CSN or KW from another group and as bowel cancer has been suggested I would have hoped that the Bowel CNS/KW would have been in touch.

Your hospital will have a PALS office (Patient Liaison) and if you get in touch with them they should be able to find the contact information of the CAN/KW for you.  Or ask at your appointment today if you receive my message before you leave.

Also if you hospital has a cancer support centre do pop in to see them or phone them as they will be able to offer ways of supporting you.  I found my centre very helpful and supportive and I was able to have counselling sessions with them.  There should  be a Support Centre in your area if one your hospital hasn't one.

I really hope you get some answers today, and please get in touch to me on the Bowel Forum to let me know how things go today.  We are a very supportive group on the Bowel Cancer Forum and when you reply to me, I'm sure lots of other will be in touch to support you to.

Earlier this year I was a Patient Rep on a CUP Peer Review for NHS England and I understand that it can take a lot of testing to find the primary and sometimes these test are inconclusive, but you will be offered treatment that is the best option for you.

Take care, and sending you a hug

VickiLynne