Advice needed please

Hi Norma,

Unfortunately Mum has not had a great time during her treatment. However, having met several other lovely people with the same diagnosis they are all doing ok, for some reason it has knocked my mum for six! We were warned before treatment started that the chemo treatment is one of the hardest to bear as you are given three types at once, one of which you stay connected to from Mon to Fri when a district nurse comes and takes it off. Mum first went to the dr with a lump which is how we found out, she is 56, 57 in a couple of months and hasnt smoked for 20 years. I strongly believe that positive thinking is key to this, stay strong Norma, I am so so proud of my mum and what she is dealing with, and like i said before her reactions have been a lot worse than the other patients with head and neck c. As for PET scan mum has not been offered, she had MRI and CT but no PET. CT did show that it was contained in right side of neck but it was only a chest and abdomen CT so a PET is best I think?

Christine,

Thank you for replying to my blog, i found what you wrote comforting. Mum does know that the hallucinations are happening and she has explained them to me more as daydreams which I guess we all do. It could very well be all the drugs.

Kessie,

I am so sorry for not acknowledging properly your response to my blog earlier, all i can say is i was panicking and totally didnt take in your situation, i send you my love and prayers and wish you the very best.

Laura xx

Hi there

I'm a T2N2M0 too.

Prepping for chemo/radio starting in three weeks. My roadmap has been diagnosis, surgery, a radical neck dissection, basically the whole left side lymph network removed along with a bilateral tonsillectomy at the same time.

I don't think this equals a stage four. Although I only got sight of the drafted response following the surgery and analysis of a whole host of other biopsies taken during the operation. I had a left side tonsil tumour, the tonsil hadn't actually grown at the time the node came up, I had some delay in presenting as at the same time I had five weeks of flue/chest infections when both sides of the neck were up but the left node only reduced in size by half when the infections cleared so another visit to GP resulted in swift referral to ENT.

They did; biopsies, PET and MRI. Surgery was three weeks after and as I am having radio they decided to knock me out again last week and have all my wisdom teeth out as they were impacted. They had been left in place as not causing a problem.

Ask you consultant to run through the staging evaluation and what it means. The node tumour had breached the node capsule and was quite big in my case but no evidence of spread and the tonsil tumour hadn't breached and again no evidence of spread. I am told the chemo softener (makes cells more receptive to radiation) will be once a week for me and five times a week radio for six weeks. This is treatment designed to cure not manage.

The M0 is important, it means it hasn't travelled anywhere else other than the lymph node. I was told 80% then 60% and am seeking some clarity but chances are it is on the good side. Your mother less that a decade older than me so falls within the middle age spectrum where I am told this disease is highly curable so long as it isn't at advanced stage.

I have suffered a lot from lack of information, not that I have been neglected but that full picture normally evolves over a few weeks with tests, surgery, biopsies and scan results. The PET is the one I was told is the most detailed and accurate. They give you a radio active glucose jab, very low level, and you rest while the body soaks it up, about an hour. Then, scan, the radiation is absorbed at different rates/quantity by different cell types, the cancer cells suck up more so show up very clearly in a computer generated 3d type graphic.

Hope this helps. Pester them with any questions about what and why a particular treatment path is for you. All people are different so the approach for one person may not be the same as others. But, don't be afraid to ask team lead or assigned lead nurse. I found they had already told me a lot I'd missed as things do come at you in tidal waves of information.

All the best and don't panic.

John