Hello from a 'Gate Crasher'

Hello Georgiana , of course you are welcome.

Can I say your fortitude is amazing. I'm so sorry to see you here though

I seem to remember posts from some of us mentioning involvement of the carotid sheath ( I'm sure that's what you mean as the aorta supplies the body not the neck, but the carotids are branches of it) I will do a search for you.

You say radiation isn't an option. Have you asked whether Proton is, because that is much more finely targeted

I've done a quick search for you HERE

I see somebody has responded well to palliative RT and immunotherapy. Our type of cancer (HPV driven squamous cell carcinoma) can respond well, but that would be different from yours. I wish I could help more.....

Hi Georgina like Dani says of course you’re welcome so sorry you've found yourself on here.
I can’t think of anyone but am speaking with an oncologist I know on the 8 th  working with a cancer charity I sometimes do stuff with. I will certainly ask her are you at a cancer centre ?you can ask for a second opinion.

palliative radiotherapy and help in many cases like Dani says combined with immunotherapy. 

hugs Hazel x

Dear Dani... thank you so very much for take the time and making such an effort in my behalf...  I have Metastatic breast carcinoma HER2 positive...Paresis of the right vocal cord, pathological right sided lesion which is adherent to the right carotid artery/sheath... ( I have copied this from a hospital report)  

I am awaiting scan results.. so far they have failed to come back twice.  I am meeting with my lovely Oncologist on Monday.  I am expecting to be told the tumour has grown as I can feel it more now.... I will read your blog you have left me the link for.  Before I read it I am wondering if you are still clear.  I really hope so. Tongue cancer...  this raises so many questions in my mind.  When people ask me 'how are you?'  I reply 'apart from physically I am fine'  With the title of your blog, you sound a kindered spirit.  I feel worse for you than me... I expect you feel worse for others than yourself?  Anyway, I will now read your story... and thank you again for taking the time to write back to me    

Hi Georgina 

Welcome from me sorry to find yourself on here with spread to your head  and neck area. I’m 7 years post treatment and living a good life. I can’t recall any e in past 7 years with your diagnosis. Everything x for your meeting with oncologist and please update us. If we can help at all please shout out. I

Pallative radiotherapy with immunotherapy has had some good results for others I do hope you can find a plan 

hugs Hazel x

 Georgiana 

That is such a kind response. I am very well. My treatment finished six years ago next January. I never knew a human being could be in such pain and despair but my team fixed me and I’m discharged from routine review. 
This forum was a godsend. I knew I was going to die but my oncologist and all the good folk here held my hand and pushed me through back into the sunshine. 
The body is an amazing thing. Sometimes the mind lets it down but hey ho tomorrow is another day. 
Do stay in touch. I’m crossing my fingers for you. 

Dear Hazel....  I am very pleased you are six/seven years on. What a difficult place to have had cancer... The way my Oncologist has talked about where this cancer has latched onto makes it sound like I am the only person this has happened to.  I asked her how people die with this tumour?  She said she did not know.  She is most likely being kind and avoiding answering the question.  There again how could she know.  Yes it is her type of cancer - but in an unusual place...  I am not an optimist, I am not a pessimist.  I view myself as just being realistic... this way I can get busy and enjoy now, this moment in time.  I will watch your videos now.  I hope you keep on enjoying life... and thank you again for replying

What lovely videos... well done you...  keep well

Thank you I like to spread awareness of head and neck cancers they are a relatively unknown cancer in the scheme of things. But they are increasing yearly now. I’ll keep looking and will let you know if I come across anything. I know what you mean by bring realistic I’ve got an attitude if I can’t do anything about it I dont worry over it anymore. It’s onwards and upwards and deal with situations as and when they arise. Please let us know what oncologist says. But remember you can ask for a 2 nd opinion. The Royal Marsden  has an excellent head and neck cancer unit.

hugs 

Hazel xx