I was told some time ago that my most likely diagnosis is cancer of unknown primary (CUP). Since then something showed up in my tonsils on a PET scan, so I’ve been referred to the head and neck department. They don’t think it is very likely that my tonsils are involved (my only other sign is in my groin lymph nodes) but they are being careful, which of course I’m glad about.

The problem is that I’m now 8 weeks on from my diagnosis (4 months since the initial referral). By the time I see the head and neck consultant it will be 10 weeks and I still won’t be getting treatment, just another investigation. I’m on my 4th department and each time I’m referred on I seem to start again at the back of the ‘seen in 2 weeks’ queue.

The delay is very frustrating and it is quite hard to get a straight answer about whether I should be worried about it. When I ask I’ve been told that at each stage they will be weighing up the cons of delay with the pros of identifying the primary site and making sure the treatment I get is the right one. Of course I’m glad that they are doing all the possible tests and really trying to track it down, but I’m getting very anxious about the delay.

Any tips on getting things to move a bit more quickly?

Anyone be able to give me an idea of how long it took them to get to the point where treatment started? Were you referred to a CUP specialist once they thought this was the likely diagnosis or not until they had been through every possible test?

Thanks!

Kate

I contacted you in January after mum was diagnosed with a stage iv CUP. Cancer was found at 3 sites in the lymph and we were told the prognosis was a few years following a course of chemo. The cancer had oestrogen markers and had not spread as far as they knew but only did CT and not a PET. After 3 go’s at chemo (carboplatin and paclitaxel) mum has had rescans and has been told the cancer has “gone”! This confirms the likely primary was ovarian according to the oncologist, so she is now to have a hysterectomy between her 4th and 5th chemo’s. She has been doing a combo of the Jane Plant and Budwig diets which I am sure has helped. We are still stunned and slightly confused as well as elated. Like being told you have won the lottery but you can’t check the numbers yourself and too scared to celebrate in case it isn’t true. But just wanted to keep the positive stories going to help those new diagnosed as I don’t know what I would have done without being able to contact John on this site at the start. will keep you posted.

Donna

I am new at this as my mother was diagnosed with CUP cancer in September 2011 at the age of 64

It took approximately 3 months of mis-diagnosis with treatment commencing on a rare cancer named GIST cancer before the diagnosis for CUP cancer was provided

Chemo commenced Vinorelbine and carboplatin (as the thought was maybe the primary was from her lung) and she has just finalised her 4th cycle

Ma has had her scans taken which was approximately 2 months from the last ones…with devastating results with the cancer showing growth in the lung, liver, abdomin wall and thigh muscle and a new small growth in the brain.

We go back to see the specialist today and i have been researching alot of information however have not been able to access the sister site for Jane in Australia….? has anyone else had any problems.

I have found all your comments helpful with the LAB21 and CUP One trials etc to assist with the oncologist discussions today however I will respect and follow what ever my Ma wishes from this point.

If there is any alternative medicines or any further medical information you may find helpful at this point that we may not be aware of I would be greatly appreciative.

thanks again for this site… as you all know it is a very difficult and confusing time for all….

Cheers Trina B

Does anyone have information on which colour/s are representative of CUP?  as in Awareness ribbon etc.

I have seen black/white stripes [like a zebra] white, blue, and bright yellow.

Last year when our support group celebrated their 10year anniversary I made a knitted blanket which included squares representing each of the cancers our group members had shared over the 10years plus the corners were for the carers.  When it came to CUP I couldnt find anything other than the above so I chose to use the bright yellow.

As we are about to start a specific CUP group locally I would appreciate comments or anything more definite?

Thanks

Lyn

Just wanted to share some information with members that may help.  As you may be aware from my story I am a 13 year CUP survivor and have been the facilitator of a general support group here in Australia for the past 11 years.  In order to try and reach people who may not have the opportunity to physically attend a support group, either because of time, distance etc, my son and I have been doing a free weekly podcast for some time now and the feedback so far has been very encouraging.  Please remember that we are amateurs, but are enjoying doing the podcasts, we do not give any medical advice but try to cover a different subject each week.  Naturally some of it is relevant only to our local area but we have tried to include general information with the idea of encouraging people to seek out similar resources in their own areas/country.

As we are also about to launch a local CUP group, the podcast this week has been about CUP, and I have included information about this site as well.

I would be pleased to hear your feedback if you are able to listen to any of the podcasts [details below] as to whether they are helpful etc.

We also do a daily quote and tip on twitter!

Take care everyone and thank you for sharing your stories – this is how we learn and grow.

Lyn

 HERE  -  http://itunes.apple.com/au/podcast/cancer-support-group-candles/id453422769 

HERE  -  http://candles.podbean.com/ 

OR HERE  -  http://twitter.com/#!/candles_cancer