Hello Twolumps, 

I hope you had a lovely Christmas too thank you for your good wishes. Not long now to wait before you see the oncologist on the 8th of January - I can imagine that after all this time having all sorts of tests and scans you must be looking forward to seeing the specialist and getting some answers to all the questions that may be racing through your head at the moment.

As you say there is a certain amount of uncertainty that inevitably goes with being diagnosed with cancer of unknown primary but it won't be long now before you find out more about what your treatment plan is. In the meantime, we have some useful information on our website about cancer of unknown primary which you can read here and which includes a section about treatment.  Our nurses are also available on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm (but closed on 1st of January) so don't hesitate to give them a call and talk things through with them if you wish.

I hope that you will hear from others here who have been diagnosed with cancer of unknown primary and that they will be along shortly to share their story with you. 

Best of luck for your appointment on the 8th and let us know what you find out if you get a chance. 

Best wishes, 

Lucie, Cancer Chat Moderator

Thank you Lucie, 

I will try and post as I go along. 

Cancer of unknown primary is certainly a condition I or any one I know had never heard of until a month ago so hopefully any info may be useful to others. Xx

Hello I also have cancer of unknown primary and type.

I understand how you must be feeling. I was in so much pain from the monster lymph nodes in my groin and pelivis that I couldn't sit down or even lay in bed let alone sleep. Pain killers did nothing to ease my pain.

When I went for my first chemotherapy session I was almost excited to finally be fighting back against the cancer which was very much winning. 

Luckily I have had a good response to the chemotherapy, my lymph nodes have shrunk, my pain has gone, and life has gone back to normal.  

I hope you get some answers when you see the oncologist and that you also get some relief from the treatment.

Wishing you the best and sending lots of positive thoughts your way.

Georgina 

Georgia,

Thank you so much for your response, it fills me with so much hope. Sometimes the pain can feel like the overriding problem and I cant wait to have a pain free day again. I want yo be able to walk my dog, have a bath, cook and enjoy the simple pleasures again.

I'm glad to hear you have progressed well and aim to follow in your footsteps in the future.

Best wishes Rose xx

Hello Georgia B, firstly I must apologise for not responding to you earlier. I'm still in our local hospice taking as much advice and pain relief as possible, trying to get some movement back in my shoulders and strengthening my legs.

My first Oncology appointment this week was horrendous. The rug was pulled from under my feet when the Registrar (accompanied by a student) said chemo would kill me and they couldnt do anything!! My sister and I sat in a cupboard sized room together with no hope, not knowing what to do but cry. Then the Oncologist came in, big smile and said he'd try radiotherapy, followed by chemo at lower levels over a period, he'd get me able to go for a walk with my husband and dog again, simple pleasures but so very important to me. So I've been offered a small window of hope. My mask is being made on Monday then its all systems go. I've signed up to all their research and hope that I have a little bit of future and can help someone else during my quest to live longer.

I hope you are still feeling well, thinking of you. Xx Rose b 

twolumps 

 hope your ok and that your appt with oncologist went well. X 

Just wanted an update. How are you doing now? Hope you're feeling better!