The start of what is to come

Hi Lanclassie 

welcome to our family but so sorry to see you here. 

Lanclassie said:

Matter of factly she said when everything is back the team will see what is best curative or pallative. 

I think this is totally wrong and she’s guessing. Heaven knows why she said it. Early oral cancer is curable so hold onto that. 
Take somebody in with you and pen and paper. You can even record the appointment on your phone. 
Macmillan have some info here. It’s a bit generalised but there are useful bits 

https://www.macmillan.org.uk/cancer-information-and-support/treatment/your-treatment-options/questions-to-ask-your-healthcare-team

Lanclassie said:

  My first thought was my hair....then I told myself what a stupid thought that was!

Not stupid. The chemotherapy we usually have is cisplatin which doesn’t make you lose hair. 
Stay with us. You’ll have lots of questions and there’s always someone around. 
Hugs 

Thank you so much for the reply, did glance at the blog - your story is very supportive, and am holding on to what the first nurse said, She was so very kind and encouraging.- the chemo you mention if I to have it hopefully be the same.

Hi Lanclassie

T2N1M0 tonsil cancer HPV+ Chemoradio finished June 2023

Yes the treatment is tough but outcomes are very positive for HPV 16+....circa 90% success rate....stick with this forum as all on here have walked the treatment walk.....plenty of great advice and willing listeners.

Ask the oncology team about a PEG feeding tube....it can help recovery.....greatly.

Best of luck and take care

Peter

Hi welcome to our grouo from me. Your head will be all over the place we’ve been there. As Dani has said caught earky head and neck cancers are curable so remiss of nurse to be so glib. As for your hair I had cisplatin and didn’t loose my hair ok the radiotherapy makes it thin and we get an gaur kiss at the back of our head but it’s not a tirsk hair loss.  Plus it’s human nature to thjnk oh no my hair so don’t worry. 
Make a duplicate list of questions hand one to consultant it’s what I always did. 
ask us on here we will all hold your hand. 
hugs Hazel x

Good evening Lanclassie, welcome to the forum, i think we have all agreed that the nurse is not in the position to talk about this until you have been seen by your consultant, so im not surprised you a feeling like this. When i went for my first appointment with my consultant he arranged for a biopsy to be done straight away along with xrays and blood tests, I then had to wait for scans etc but he did tell me there and then that it was an aggresive cancer. Thankfully yours is in its early stages so it gives the consultant and their team a better chance of curing it although the cure rate is very good for head and neck cancers, please try and forget what the nurse said and see what your consultant comes back with as they normally have a good idea in what they are looking at and the best treatment/surgery available. Just enjoy being with your husband and dog, together you will get through it and we will be here for advice and encouragement, wishing you all the very best for your meeting with the consultant. Take care.

                                                                                                    Chris x

Hi Lanclassie , sorry to hear your news and ignore the nurse and when a doctor tells you then you know what your dealing with . My hubby had mandibular and to be honest your best coming on here as this lovely people will give you honest answers and they have been through it and helped me help him as he wont ask questions but will tell me hes worries. Wishing you all the best xxx

We were told that it was found early, neck cancer then found in ostophagus after. 
I was told by a Macmillan nurse that if same cancer it was incurable!
But after seeing oncologist he said it was treatable! Currently on with treatment 

Hi Lanclassie, welcome to the group from me. Take no notice of what the nurse said, the doctors are the ones who will check all the results over, have their meeting then give you the treatment plan, you will feel a lot better about it all then. These cancers are very treatable, and the treatment comes with very high cure rates, we are here living proof of that. Stick with us, any worries or questions just ask, someone will always answer if they can.

Ray.

Hi Lanclassie

I can understand why your nurse said that, but it was not helpful to you.  There is clinical evidence that our cancers are very curable.  Often more than 90% curable.  Yours is early stage so there is no reason to suspect that it is not curable at this time.

This waiting is terrible.  Your mind runs riot.  I've been there 4 times now (don't read anything into the 4 times as I am a unique case) so understand your concerns. 

When you meet your consultant to discuss the findings of the scans etc he should be in a position to offer you a treatment plan.  Listen to what is on offer, but in the meantime research what options you have.  ONLY use good sources such as this forum, Cancer Research and Macmillan main web site for example.  Don't blindly Google things as much out there on the web does not reflect the reality of today.

Having researched you should be in a position to ask the appropriate questions relating the the course of treatment on offer.  There are a number of options the consultant may take so it is impossible to give you the questions.  But you certainly want to know his estimate of cure.  Whatever treatment you have it is tough and recovery is a long period, but most go on to have a very good quality of life after it is all done and dusted.

Take someone with you and don't be afraid to ask even the most simple question to clarify what has been said.  Also don't be afraid not to make a decision at that appointment if you feel you need more time to decide.  Your key nurse is a useful person to come back to.  I know they have lost your faith through one thoughtless comment, but they will be important to you going forwards.

This group is a wonderful resource.  Nobody will tell you what you need to do, but will give you personal experience to help you make a choice that is right for you.

Thank you everyone I am lifted by your kind comments and having place to chat is wonderful for me.  I kept saying I wish there was someone I could talk to and I have found it.

Just to add just after easter and seeing consultant again to discuss results, so he seems on the ball.