Hi,

My 48 year old partner was diagnosed in August with squamouss cell carcinoma following the removal of what they thought was a cyst from his neck (this was a year after its first presentation) He then had a PT CTscan that suggested the primary was in the right tonsil. The consultants then did a biopsy (rather than full tonsillectomey or radical neck dissection) which confirmed cancer in the tonsil and staged his locally advanced head and neck cancer at 2b He started 6.5 weeks of radio (just right side) and chemo cisplatin on Sept 29th (7 weeks after the scan). We are now at the end of the 5th week and I doubt whether he will go through with his 6th cycle of chemo as he is having such horrible gastric side effects.
Although the staff at the Brighton cancer centre are great and they really try to help with treatment side effects, I feel that monitoring of the actual treatment is rather ambivalent. For example my partner has already lost 24 pounds and although we were told that there would be a need for a new immobilisation mask if he lost more than a stone this has not happened. My fears about quality of care have increased after reading about other people's treatments and care here here. I am particularly concerned that the cancer could have spread during the 7 week wait for therapy and really wondered why he was not given a tonsillectomy or a radical neck dissection. Up until now, I have found it very difficult to ask medical staff questions about all of my concerns as my partner has not been reading very much about his cancer since diagnosis and seems to have little understanding of the high probability of recurrence. I have assumed he does not want to know as he has an extremely keen mind and spends a great deal of time researching other things of interest. Last week I managed to create an opportunity for a chat with the onocologist who he had not seen since initial diagnosis and pose some questions re radical neck dissection and monitoring after the end of treatment.
I was told that they had not conducted a radical neck dissection because of fear of delaying start of radiotherapy treatment and at the moment they are having discussions about the benefit of post therapy dissections. He remarked that they had recently performed 4 on other patients and found no cancerous tissue so he seemed to be of the mind that it was better not to bother as a matter of standard procedure, but would perform a radical dissection if a lymph node was found to contain cancer during monitoring in the future. I don’t think that is very satisfactory as an article that was posted here suggests a much greater chance of regional control following radical neck dissection, and besides, based on our previous experience it might take ages to diagnose another affected node. I think treatment plans should not only be affected by the probability of occurrence, but also the likelihood of speedy diagnosis, which is pretty poor in Brighton. This brings me to my next question. When it comes to best practice, how long should we have to wait post treatment before some sort of scan is undertaken and what kind of scan should that be? The onocologist said that in Brighton they were debating whether it should be 6 or 12 weeks. 12 weeks sounds a hell of a long time to me. As if the implications would be horrendous if therapy has not been successful, or the cancer had spread before the start of therapy – my big worry. It also sounds as if is common practice here to only use CT scans to monitor treatments. As I understand it CT scans only show up anatomical abnormalities and therefore would not show up unusual cell activity which is what would be needed for quick diagnosis.
I would be really grateful for any of your thoughts on this as I am sick with worry. When should a first post therapy scan take place? What sort of scan should it be? And how frequently should he be monitored post treatment. Should we try and push for a radical neck dissection post radiation therapy?
Many thanks, this really is a great site
Cathy

Hi
this is such a difficult question to answer, it seems to me that every hospital and country has a different procedure.
i was diagnoised dec 2005. i had my tonsils out due to one being slightly enlarged and my ENT doctor thought it looked odd? rthey discovered cancer in the left tonsil. i had a ct scan that showed no other cancer. my oncologist said that there was not a scan invented that would show any cells that may have escaped. i was given another ct scan 6 weeks after the treatment finished. i have not had any scans since, now 2 years. I was T2 NO MO. my oncologist then put me through a regime of 6 and a half weeks of radio therapy to both sides of face, all around my neck including the back of my neck. and 7 weeks of cetuximab.
i have been left with no saliva and terrible side affects. if i had my chance again i would have opted for just the one side of my face and neck to be radiated. i was not offered a choice and was not experienced to ask.
If i was you i would continue with the treatment but ask to see another oncologist at a top cancer hospital asap. a 2nd opinion would settle your mind. good wishes.