Looking for support

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Hi everyone, I was diagnosed with secondary cancer of the ovary in February with no primary found as yet.

I have had a total hysterectomy to remove a large mass in my uterus, this was sent to histology at which point they found cancer in the ovary. Since then I have had a CT scan and was sent to endoscopy where my bowel and stomach were checked all of which came back clear. 
I feel really uncertain of what will happen to me, after I had endoscopy procedure I hope that they would have found it there and that I could just get on with treatment. I feel that with every day that passes I must be getting worse as everyone says the sooner you find these things the better your prognosis is. 
I had my surgery on the 19th January and last week my local hospital referred me to The Christie in Manchester to see if they can find the primary cancer. I just want to know what they are going to do and what treatment I will be given 

  • Hi Sunnybee, I was diagnosed with Squamous Cell Carcinoma of left neck with Unknown Primary in June last year, after finding a lump which I thought was a swollen gland in my neck. This turned out to be the SCC of my left lymph node which turned out to be the secondary cancer. . I underwent various tests, including needle biopsies, Ultrasound scans, MRI scan, and endoscopy, a Mucosectomy (where they took a sample from the very back of my tongue) as well as a Pharangoscopy. Despite all this no Primary was found, so I was then referred for a full body PET-CT scan at Mount Vernon Cancer Centre near Uxbridge, but again this did not find the Primary. At the consultation with the oncologist to discuss my treatment path I was told that my cancer was a curable cancer and with regards to the Unknown Primary I was told that it is possible that my own body might have dealt with it or that it was so tiny that it had just been absorbed. 

    Since then I had 30 sessions of radiotherapy 5 days a week for 6 weeks and 2 sessions of chemotherapy (all quite painless, but there were side effects but all quite manageable). Twelve weeks after treatment ended I had another PET-CT scan and the area treated had responded fully and there was no sign of cancer anywhere else. I will now been under close monitoring for the next 5 years. Like others on here who also have Unknown Primaries it will always be there at the back of my mind as to whether it will pop up one day, but I’ve got to learn to trust my body to let me know if something is amiss and also the professionals who continue to monitor me.

    As my cancer is in a different place to yours I cannot answer as to what treatment you will receive but put your faith in your medical team, be strong, you will get through the treatment and we’re all here for you. By the way I feel as good as I’ve ever been and looking forward to new adventures ahead. 

    Best wishes

    Carol x

  • Hi, thanks for taking the time to reply, really glad that you are feeling well and very positive about the future. I know I am only just starting my journey and as yet do not have a treatment plan. I am trying to stay positive but sometimes I get frustrated that everything seems to take so long to get done. I am waiting for a another CT scan which as been requested by The Christie. I have just rang my local hospital and they can’t seem to find the letter requesting it!! Things like this really bother me I need to know that it is getting sorted, but I feel like I am being a nuisance ring them to chase things up.

  • The waiting is definitely the worst part in all this as you just want to know the final diagnosis so you can get on with the treatment. You mention that The Christie had written to your local hospital last week but they haven’t received anything just yet.  As it was Easter Monday last week I’m assuming that they possibly only wrote Tuesday onwards so by the time they received the letter it could be Friday of last week or early part of this week before it’s arrived. Nobody will think that you’re being a nuisance, it’s a very worrying time for you, but I’m sure that they’ll soon be in touch with a date.  Perhaps you could also speak to your own GP and explain how worried you are, you never know they might be able to chase it up for you.

    Let me know how you get on.

    Carol x