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Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Waiting again!

madaboutmutts
Posted by

Some of you may remember my post that my husbands PET at 12 weeks post tonsil/lymph node radiotherapy, had shown clear lymph nodes but some uptake where his tonsils were, which may or may not be residual cancer.  The surgeon said 4 weeks ago that he needed a biopsy to see if it was inflammation or cancer. We have now been told the earliest for this will be end January and as the biopsy result takes 2 weeks we are looking at no result till mid Feb - 10 weeks after the consultant said he needed it.

We are really really anxious about this, the waiting to see if he still has cancer is unbearable and we are worried that if it is cancer, it will be developing all the time.   I have tried speaking to admissions, consultant sec, emailing clinical director and PALS to no effect. We have even enquired about having the biopsy privately but there is still a wait of several weeks.

We are at our wits end about the prospect of more weeks of worry, and not knowing if he will need further treatment.  This is a large teaching hospital and we know they are under pressure, but surely with cancer they should move a bit quicker. 

chris2012
Posted by

Hi madaboutmutts, I do remember your last post, this does sound like a long time for a biopsy to be done. Please ask to have a meeting with your consultant along with the head nurse, its the only way you will get anywhere. I'm sure they cannot deny an appointment with the consultant, I had to do this once as I felt they were dragging their heels. A biopsy is normally done within two weeks, so I think you will have to insist in seeing your husbands consultant because half the time he does not know what is going on as he has other patients to diagnose, he relies on other hospital staff to sort it out. The office staff are not interested in your husband diagnoses, he is just a number to them and do not realise the anxiety it causes. Some might disagree with me but this is how i would be feeling if I was being treated like this. I hope you manage to sort this problem out, best wishes.

                                                                        Chris x

Its sometimes not easy but its worth it !                Click here to find out more

madaboutmutts
Posted by

Thank you Chris.  I'm on the case again this morning.  Apparently Consultant Surgeon is away till next week and all I get are answer machines when trying to contact secretary. I've also left messages with Oncologists secretary, as he did say in a letter to GP (dated 10 Dec) that he would discuss the biopsy result with MDT team and see us in 2-3 weeks!!   So stressful especially as my husband still having throat soreness and is very worried the cancer is still there.  

madaboutmutts
Posted by

Thanks Chris.  I am on the case again this morning. Consultant Surgeon is away till next week and all I get are answer phones. I've also left a message on oncologist's phone as in a letter to GP (dated 10 Dec) he said he would discuss biopsy results with MDT and see us in 2-3 weeks!! It's so stressful especially as my husband still has throat soreness and is very worried the cancer is still there.

Beesuit
Posted by

Do you have a dedicated nurse you can contact? She might be able to Move things on.  When I had an issue before a scheduled appointment my surgeon’s secretary contacted him on holiday! 
I agree with Chris about some office staff. My first ever appointment was downgraded as non urgent by somebody in some office. I kicked up such a fuss when my GP referral had not materialised in time they saw me straight away

Dani
Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
The blog is my personal cancer journey, warts and all. 

madaboutmutts
Posted by

Hi. Yes we do have a nurse, but she says she has no influence on theatre lists.  I've spoken to PALS today and they say they are "working on it". They also emailed surgeon. I've also spoken to his sec who said she would also email him and admissions.  They will be fed up with me!!   

chris2012
Posted by

Ah Ah well done for stepping up the pace, it normally does the trick so let's hope so. But carry on if you don't get the answers you need. Wishing you well. 

                                                                               Chris x

Its sometimes not easy but its worth it !                Click here to find out more

RadioactiveRaz
Posted by

Hi has Chris suggests keep on top of it , fingers x the Nhs gets it act together on Monday when it seems they should all be back at work .

my problem is with admissions randomly cancelled my next appointment as not urgent!!!!!!!!! Ummm I am 16 month into cancer remission and e n t consultant want to see me every 10/12 weeks. The booking clerk had the cheek to say to me yesterday  well we’ve no appointments available for next 3 months ! So I politely said  my consultant wants to see me has I am a cancer patient,well was reply we’ve nothing  for ear syringing  either. I took a deep breath ummm listen to me !,, I wanted to scream. Eventually he said I will contact someone and ring you back which us the standard fob off ! Did I get a call nope ,so back on trail Monday ,wouldn’t mind the reason my appointment was cancelled was it was booked 10 weeks out and only now take booking 6 weeks out but no appointment s think  someone having a laugh l Anyway I Truly hope you get somewhere next week, any consolation 2 of my blog followers contacted me yesterday they both like your hubby were showing uptake in tonsil area had had biopsy’s and both got results yesterday m like you had a terrible Christmas waiting and news was all clear !

Hazel 

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer 

T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes  later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions.   

Beesuit
Posted by

Grrrr Hazel 

What a shambles 

My appointments are shared between Maxfac and Oncology so my appointments are made every 4 months. Both consultants do the appointment on their computer screens before I leave and I have a hard copy at reception. 

Dani
Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
The blog is my personal cancer journey, warts and all. 

madaboutmutts
Posted by

Thanks Hazel.

Just feels like we have been abandoned and nobody seems to care.  His radiotherapy treatment I cant fault but since then it's been poor.  We are very stressed with the uncertainty as to whether or not he has residual cancer in the tonsil, especially as he has a cough which we are not sure is a side effect of the radiotherapy?   Hopefully might get somewhere on Monday - though not holding my breath.  X

RadioactiveRaz
Posted by

Breathe deeply and fingers no toes crossed for you to get somewhere next week. I know what you mean think we are too scared to make too much noise as we've all got the next 5 years to get through,with hospital visits and don’t want to make too much fuss. 

Look forward to hearing your response when yiu get through to someone. Hang in you’ve done all the hard work .

Hazel x

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer 

T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes  later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions.   

RadioactiveRaz
Posted by

Tell me about it , some whizz kid came into trust last January and altered the booking system nothing can be booked further than 6 weeks in advance then you get to that stage and can’t get in ! Last appointment consultant said he regularly had 10 emails a day to deal with from patients who can’t get appointments. What makes it worse is the booking clerk saying what part don’t you understand whether you have had  had cancer or want your ear syringing  I don’t have any appointments grrrrr 

rant over H 

ive got my oncologist yearly re Jew Monday at main cancer unit that appointment came through bang on time so just shows. Anyway will ask him what I can do 

hx

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer 

T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes  later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions.   

RadioactiveRaz
Posted by

Hi hope you got somewhere today with appointments to see some one .

on my news imrung appointment s again got a totally different response a lovely lady who within 2 mins has got me the original, appointment that the bookings team has cancelled back ! Then was at Bthe main cancer centre met my oncologist for yearly reviews ,blessing  him he spent an hour of his lunch break talking to me and hubby and exchanging views.It just shows what a difference  good consultant can make , I even have his email address which he says I mustn’t hesitate to use it if I have any worries. 

Really hope you’ve got somewhere today 

Hazel 

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer 

T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes  later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions.   

madaboutmutts
Posted by

Hi Hazel

After much badgering have been given a date for biopsy 16th Jan.  We are so hoping this will show post radiotherapy inflammation only!   A bit worried as husband has  a cough - not sure if this is only due to dry mouth. Did you have this after your radiotherapy?   Glad you have got sorted - yes it really does make a difference if you have a good Consultant.  Both our oncologist and ENT Consultant have left and the new ones aren't nearly as approachable.  Still at least we now have a date and should have a result by end of Jan - 2 months after the PET scan showed activity in throat.  As his lymph nodes were clear and scope looked ok we are hopeful of a good result.  

RadioactiveRaz
Posted by

Hi 

Thats one step forward at least , yes once Radiohead finished I developed a cough in fact when I stopped taking the co codomol the cough developed. But yes dry mouth does in some cases make you cough today in waiting room there were 3 of us sipping water inwas 18 month post radiotherapy they were 3 month and 6 month  and coughing so wouldn’t worry too much easy to say harder to do I understand that entirely. .

clear nodes and clear scopes are excellent indicators , there as been a few people on the various forums whose pet ct scans were still showing radiation uptake , one girl like I said who has been in touch  with me got  the all clear last Friday after a longish wait mid November  , and a lady who has posted in Macmillan before she had a biopsy early December after pet ct scan showed uptake  totally ruined her Christmas but on Friday got the all,clear. In my own case I wasn’t scanned until 18 weeks post radiotherapy. So hang on in there sometimes the consultants forget that it’s not routine for us the patients or family’s. sensing positive thoughts Hazel xx

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer 

T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes  later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions.