Hi. Hope everyone is doing OK.
Just a little update on my story. After no primary found on MRI or PET CT scans and no cancer located after tonsillectomy I had further biopsies done 2 weeks ago on a possible area back of nose which have also come back as no sign.
After speaking with nurses today I have been advised that after MDT meeting the plan now is to get me back in for surgery for further biopsies on base of tongue and back of throat and at the same time remove the lymph node.
I guess this is all quite normal although I do wonder why all these areas of biopsies are not done in one go unless that isnt possible?
Regards
Paul
Hi Paul. Have a look at my profile. You are very similar to me at this stage. It is a fine line with surgery between doing too much in one go and causing significant distress to the patient - possibly all quite unnecessary and following the evidence. At the moment they are following the evidence - or lack of it!
Hi Peter. Hope you are on the mend and doing well. Thanks for your reply.
Reading your story you had a watch and wait period after neck dissection when primary not found. Is this normal procedure as my consultant advised that even if primary not found then I will receive chemoradio after the neck dissection and further biopsies next week either way just to a bigger area if primary not found rather than a targeted area.?
It was my choice- both times. That said, my MDT independently agreed with my decision. The MDT comment to me was that I could have treatment, but they did not believe that the trauma was justified with no sign of the primary.
Hi,
Hope everyone is doing good.
Just thought I would drop a few lines to update on my plan. Had an appointment yesterday with consultant who confirmed I am booked for surgery Tues 23rd April to remove Lymph nodes in neck and also Glossectomy to remove top layer of tongue. After this surgery they are again hoping to locate primary from the biopsies of the Nodes removed. Plan at this stage is to start Radio & Chemo around end of May with the option been to target if primary located or as I understand it everywhere head and neck if primary not located. I was told finding primary is the best option due to the fact that targeted radio/chemo will make me feel terrible and no primary found the treatment will make me feel really really terrible. Consultant did also point out that if no primary found it is absolutely possible that the immune system has dealt with it although this wouldn't alter the requirement for the Radio/Chemo treatment .
At least we now have a plan of action going forward and I will know more in a couple of weeks after biopsy results back.
Paul
HinPaul. Don’t overthink it if no,primary is found you’ll be fitted with a peg I would hope .i had chemo and radiotherapy not both sides albeit reduced in the left side I was 61 when I went through it and now fast approaching 6 years post treatment.
Hazel xx
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
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