High grade Squamous Dysplasia (oesphagus)

Hi. I just have a query on behalf of my mum. She has had a rocky ten months. Diagnosed with HPV in oesphagus and mouth. Prescribed antivirals. Did not help. The. Had some facial cancer which was removed. Has had about eight endoscopies and twenty biopsies since then, told she had high grade squamous dysplasia. Has lost a lot of weight, can’t eat, swallow or really drink anything. In January had an endoscopy and told she had cancer so was due to have an operation last month. Had a GA and told they couldn’t operate as there were extensive changes and no good tissue. She had an appointment today and was told it is now not cancer and it is the high grade S D. She was very upset, and very confused, as the pain and difficulties are still there. She has been told there is just a 1 in 8 chance of it developing into cancer. Options are endoscopy every three to six months to check or no routine tests and see if symptoms develop…….

I am just not sure what to suggest to her. I have encouraged sleeping tablet and the nutritional supplements which she now has prescribed. Still a struggle to get down. What is the long term prognosis? She is 84 so I am guessing they don’t want to operate. From what I have read, it does progress to cancer. Also, if it has become extensive in three weeks, that is not a good sign. 
I appreciate you can’t comment too much on an individual case without knowing full details….but I just hoped that you have some advice I can share with her.

she does have a helpful GI specialist nurse and has been allocated a dietician who she has not seen yet. 
Thank you for any advice 

  • Hello and thank you for posting, I'm sorry to hear what Mum has been going through. 

    I'm afraid I am unable to tell you what your mum's prognosis is as we cannot give a medical opinion. But I think whilst her condition is not cancer it would be difficult for any doctor to.

    For the moment, focusing on your mum's general health, like sleeping, exercise, and nutrition would be good to help keep her well. Also, a read of our Prehabilitation chapter on our website may help. Do remember it is written for those who have been given a cancer diagnosis, but the principles are similar.

    We also have information on high-grade dysplasia in the oesophagus, which you may have already seen, and managing diet problems. Macmillan also has ideas on building up if you are concerned about your mum's weight loss, again the focus is on those who have a cancer diagnosis. Organising a meet-up with the assigned dietician for advice would help her through this period too.

    If you feel your mum's symptoms change Jackie, then do go back to the doctor or contact the GI specialist nurse (CNS). You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care,

    Sarah.

  • Thank you very much for your reply Sarah. I totally understand that you cannot diagnose or provide a prognosis as such, but it was helpful to hear your suggestions. Jackie