Newbie

  • 8 replies
  • 86 subscribers
  • 4299 views

Hi everyone

I didnt think I would ever post anything on a Macmillan forum but here I am at 02.20 wide awake! Following a referral to an ENT consultant last summer with a right sided swelling to my neck (no other symptoms, clear biopsy and NAD on MRI) I finally had my "branchial cyst" removed on the 5th April. Routine histology showed that the mass was cancerous - it was described as a "contained" cancer with no indication it had spread to my lymph nodes. I was told last Monday and am awaiting a PET scan. Has anyone had a similar experience they could share? I feel like I'm in a bad dream which I'm struggling to wake up from. I'm under 40 with 2 young children and I'm swinging from being upbeat and positive to imagining my family without me x 

  • Hi KMJ welcome to the group. My own circumstances are that I had raised lymph nodes in my neck and a biopsy showed they had cancer. I then had CT MRI & PET scans to identify the primary source which turned out to be at the base of my tongue. I had 2 inpatient stays for chemo followed by 30 sessions of radiotherapy. 

    Its scary but my medical team have been very supportive and given me confidence in what they are doing. I’m now 2 months after the radiotherapy and will shortly have follow up scans to see what’s happened but I can no longer feel the lymph nodes so I’m feeling confident about the future. 

    I did have a PEG ( a tube into my stomach) fitted so I could continue to get nutrients when I was unable to eat at the height of the radiotherapy. I’m now learning to eat again which isn’t easy due to loss of appetite. 

    Good luck with your scans. 

    Gareth
  • Hi Gareth

    Thank you so much for sharing your experience - it sounds like you are making a great recovery. It's the not knowing that I am struggling with so hearing from other people is a help. 

    Many thanks 

    Kelly 

  • FormerMember
    FormerMember

    Hello KMJ19.

    It definitely can feel like we are in a bad dream when we are diagnosed.  I know it took a while for it all to sink in for me, and I clearly remember going through those same thoughts you describe.

    Whenever I talk to anyone new here I always try to focus on the positives as I know that's what I wanted to hear about when I joined in 2013.  The word contained sounds good to me.  I had base of tongue cancer but mine had spread to the lymph nodes and was described as fragmented.  However I was successfully treated and am doing fine now.  There are plenty of people in this group in the same situation.  I was told by my medical team that the treatments for head and neck cancer generally have a good success rate.   I always felt reassured by having a whole team of experts involved in my care.  

    This group were great support and their help and companionship meant a lot to me.  Keep posting and let us all know how you are getting on. 

    Best wishes xx

  • Thank you so much for your lovely message Margaret.  I think I'm putting a lot of pressure on myself to be upbeat and when I think I was only told 1 week ago. My best friend encouraged me to join this forum and I'm already glad I did. 

    I will keep posting. 

    Thanks again xxxxx

  • Hi KMJ welcome to the group that nine f us want to join. I am Hazel 8 month post radiotherapy for tonsil cancer with spread to lymph nodes ,given the all,clear ie no cancer in my body in January. Now check  uos for 5 years m being awake in the middle of the night is when your brain goes into overdrive  I know from first hand experience waiting up in the middle of my own funeral was probably my lowest point .

    I have written a blog about my treatment diagnosis and recovery the newest post is first so scroll down for the start if you feel uo to it. I didn’t have the option of a PEG as my oncologist was confident I wouldn’t need one but I didn’t have a feeding tube for 6 week so upmy nose into tummy. I am niw back cycling and hill walking .

    my blog is www.radioactiveraz.wordpress.com pop in and hope  you get some answers on chemo and radiotherapy.Like someone else has already said the word contained is a good word. 

    Any quwsti9ns just ask.

    hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Thank you Hazel.  I will check out your blog.

    Congratulations on getting the all clear xx

  • Hello KMJ19 , I remember when I was first told that I had cancer I just did not sink in and I never realise there was such thing as mouth cancer. My outlook was to remain positive and take things as they came and not overthink too much, I think it helped because my consultant and his team were so positive with their attitude, putting me at ease. I was older than you, 48, when I had my first operation my children were at secondary school and we made a point of telling the Headmaster/mistress in case it affected their schooling. Hopefully, the scan appointment will not be too far away, best wishes.

                                                                                                                   Chris x

      

    Its sometimes not easy but its worth it ! 

    Community Champion Badge

  • Thank you for your post Chris. 

    My eldest daughter is 5 so as soon as we know what's what I will speak with her teacher. 

    Best wishes x