Information

Hi there I am waiting for results. I had a bone marrow biopsy to look for a blood cancer because I was anaemic and discovered it was secondaries CUP.  The sample has been sent to the lab that can find the primary.  On Tuesday there will be a MDT meeting and hopefully the results may be back.  I had breast cancer 10 years ago and it could be that but may not be, I do have a contact with the team that deals with CUP so I can talk to people.  Still in shock really as this came out of the blue. As for treatment I am in the dark like you but others seem to have had treatment without knowing source.  I am glad you are seeing the expert in this next week so I hope you get some answers. The uncertainty is the worst. Take care

Thanks for your reply. Hopefully you get some answers this week too. Just awful waiting & not knowing. Plus feel like I don't know what I'm  fighting against when it's unknown.  I've got the "can't be bothered to do anything today" attitude so laying on sofa watching tv when I'm normally active. Thinking of you & keep me updated. Hopefully by next weekend we both have answers & a plan. Xx 

I have just read your profile and realise that you maybe thinking of same area as me...I had a large ovarian cyst removed 5 years ago and it was benign.  Just a year ago I had another small one on ultrasound, but now because of similar aching in pelvic area and no clear reason I keep thinking that it is something in the pelvic region. I am the same "can't be bothered to do anything"  today.  It is sunny and should go outside and I will, but feel tired out from uncertainty.  But I do have glimpses of just keep on going one day at a time. Xx

Hi - I also had secondary liver tumour and also groin lymph node tumour - Liver lesion found in March last year but didn't start treatment until the end of September due to the many different tests and specialists you have to see to try to identify where the primary is.  I have squamous cell carcinoma probably of gynae origin.  I had 600 hours of chemotherapy between September and February,  I then had the liver tumour removed on 30th March and the groin block dissection on the 24th April.  I have had no further treatment yet but had a CT with dye this week and am waitin for results.   This is an excellent forum for this rare cancer and it has many positive stories.  Feel free to ask any further questions.  Where are you being treated?  I am luckily under Weston Park.

It is great to talk to others in this situation.  I opted for St James in Leeds (Jimmy’s) when I thought it was blood cancer but so glad as they are all so kind and caring and on the ball.  And I will stay with them now. There is also a Maggie’s Centre. Weekends always seem worst when waiting because nothing is going to happen about results!  Most people love weekends… Xx

 FreddieQ  MaryQ  Yeah I'm convinced the primary is somewhere hiding in my endemetoris tissue or cysts as I have it so bad. Just finished my period & couldn't even lay on my right side due to pain which so happened to be near the swollen lymph node. I could be totally wrong & making things up in my head now. I'm going ask if they can put camera in that area. See what the doc reckons Thurs. FreddieQ  I saw one of your replies on another post somewhere & thought your situation was similar if you know what I mean. I really hope your results come back ok.

It's good to hear some positive stories as we all need hope. I also think people with positive stories may not share them. You go on these when you need help / reassurance & when something wrong.

I'm under Broomfield hospital in Essex. I had make complaint due to lack of urgency won't bore you with the details. I'm sure my file flashes up a warning marker now "be aware" as I hounded them so much. Haha but when your life is on the line you got to stand up for yourself. Xx

GNG and FreddieQ  I decided this morning to do a bit of nudging as I know the MDT is tomorrow and I have also found out that all results will be back.  So at 8am on a Monday Morning (I would never do it at that time normally) I rang the lovely Clinic Clerk who always seems to know who I am when I ring (is this a good thing?!!!!).  I asked if I could come to the afternoon clinic instead of news over the phone and I am going tomorrow at 4pm to hear the worst or best.  Yes GNG, standing up for myself thank you for reminding me!  We set off for a few days break yesterday and I felt so yukky when we stopped for a drink that we came back home.  It is the best place to be and means I can go to the clinic. Thanks for being there.  I hope you two are going to have one of those better days. XX

 MaryQ  really hope tomorrow brings some positive news & a plan is put into place for you be thinking of you.  They know me when I call too & so they should. Haha. 

I've got until Thursday still feeling lazy no energy but oh well it's to be expected. Let us know tomorrow how you get on, fingers crossed. Xx

Well, this was a good day because I got a firm diagnosis and a bad day because this is breast secondaries...I am still sort of numb but at the same time glad that I know what I have to face.  I really hope you get some answers on Thursday GNG...it does make a difference.  I wait for a scan on Saturday and Breast oncology MDT on Monday.  So we go on.  Sleep well and rest well xx

 MaryQ  I hand on heart was thinking of you yesterday. I know not good news but at least you know & they now know where the primary is so can treat correctly.  I'm obviously nervous re tomorrow but let's see what happens. X