Hello, salivary gland cancer

Hi, I was diagnosed with salivary gland cancer in 2015 , this came as a shock to everyone because I was so young , I was only 14 years old. I am now 16 and its effects are still with me and I am not sure they will ever go. I will keep fighting in the hope that I will hear the words we all hope to hear that we have won the fight and is free of cancer. Since my diagnosis I am yet to find someone who has had a similar experience to me, hopefully this will help. I was told that chemo wasn't an option as it rarely works with cancers like mine. So I was left with surgery. As a teenager who had cancer in her face this was my worst nightmare, but two surgery a later and I am relived with how well they went. I now have a daily struggle with nerve pain, it takes so much out of me each day and is a constant reminder of my cancer and what it has done to me. However despite this I still try to live as normal of a life I can.

  • hi cat2000, you sound very brave, and a positive person, it may help you if you click on the ask the nurse section on the left of screen, they may have advice or info they can give you, hope it helps...cococat
  • Hi Cat2000

    Ive just seen your post, you have a very rare type of cancer, Mammary analogue secretory carcinoma,
      and I feel for you ending up in this position especially as you are so young. I have had a Squamous Cell cancer of the salivary gland which was metastatic and spread to my throat. Like you I wasn't offered chemotherapy as only 2.5% of  people with salivary gland cancer respond to it. I had a radical neck dissection, and surgery in my throat, followed by radiotherapy. I do have mild pain still but can manage without painkillers now. I guess we will share similar problems and if you need any help I can let you know how I overcame various problems. I understand you are taking gabapentin which is a problem in itself to overcome and wean yourself off of it. Im sure your medical team will help you with this. I can tell you though that things do improve gradually and that you will be able to lead a fairly normal life. Kim

  • Hi Kim, thank you for your message, it is very rare. so rare that the hospital has never seen it before! I think we will share similar problems. At the moment it looks like I won't be coming off the gabapentin and might never get off them ,as the pain hasn't improved but i still hope that it will decrease at some point so I can decrease my medication at least. Sorry to hear about your diagnosis I understand how hard it is especially when there are less options ( chemo ) wishing you the best X