New to group - Parotid Cancer in teenager

  • 11 replies
  • 133 subscribers
  • 530 views

Hi, am the parent of a 19 year old with secretory carcinoma of the parotid gland with a gene mutation NTRK.  

This is their 2nd time to have cancer and the cancers aren't related.  1st time round they had Hodgkins Lymphoma with chemotherapy and no radiation.  

Just wondering if anyone here has had this?  Seemingly it's a really rare cancer and rarely seen in teenagers.  They have had surgery already and next step is targeted treatment for the gene mutation then more surgery and depending on scan after results more treatment of some sort.

  • Hi Pearl

    I can't even imagine how hard it is to have your child in this awful predicament. I am so sorry to hear about their diagnosis. Having cancer once is hard enough but then another bout in a different form is really hard. I have no experience with the cancers you mentioned but just wanted to say that there is support here for you on this forum. I have had 3 occurrences of jaw cancer over time and know how hard it is getting another diagnosis after you think you have got on top of the first one. However I am doing fine now and in remission so there is definitely lots of hope. As a parent it is really hard to see your child suffering. Your medical team has loads of experience so trust in them.

    I know someone will have more info for you or will know where you can find it.

    Sending you a big hug

    Lyn

    Sophie66

  • Thanks for the reply Sophie.  Glad to hear you are in remission.

    Yes, it's been incredibly difficult and so horrible for him facing cancer for a 2nd time.

    I am wondering did you have any targeted treatment - he will be starting VITRAKVI (larotrectinib).  I am just trying to find out any information on it.

  • Hi PearlJam

    The targeted treatment I had over several years for my jaw cancer was a mandibulectomy in 2013 and 2 maxilletomies one in 2019 and another in 2022. I have had 2 lots of radiotherapy aimed at my jaw one lot in 2013 on the right side and one lot in 2019 on the left side. I have now had my quota and can't have anymore.It seems to have done the trick. I am having regular checkup for the next 5 years which is standard.

    Sorry I don't know anything about larotrectinib. Radiotherapy and chemotherapy are the gold standard treatments for most head and neck cancers. Immunotherapy is also an option if required.

    I do hope someone on the forum can help out with some info for you. It must be incredibly frustrating. His cancer sounds quite rare which must make it even more difficult for both of you.

    I do hope that once your son starts his treatment that things become clearer for you both. Ask your medical team as many questions as you can to try and get more info. as knowledge definitely does help.

    Lyn

    Sophie66

  • Thanks for sharing your story.  Appreeciate it.

    He's had a partoidectomy and they really hoped that would have gotten all of the tumour.  But unforunately it didn't.  The plan initially was immunotherapy but they found out that the cancer gene had mutated so that wasn't an option.  Chemotherapy isn't an option for this cancer.  Radiation is the last resort because he would need a very high dose and they don't want to do that because of his age.  The risk of him getting cancer again woul be huge.  So the plan is that the targeted gene therapy will separate the cancer cells from the scar tissue and after 3 months it will be much easier for the surgeon to remove the remaining cancer.  

    As far as we know there's no one with this cancer with the gene mutation.  

  • Your poor son has been through the mill at such a young age. How is he coping? Cancer treatment really puts your life on hold for a while and it takes some time to get back on your feet again. The gene therapy sounds amazing it is great what they can do now. The fear of the unknown can really play havoc with your psyche. How are you holding up? Macmillan has lots of resources that might help. They have counseling sessions to help get you through the cancer diagnosis, treatment and all the emotions that go with it. There is also a carers online forum that might be helpful. You can connect with other carers who will understand the worries you have. If you type the info you want into the search function at the top of the page that should bring up the info you need.

    Sending you hugs

    Lyn

    Sophie66

  • Hi

    My son is doing amazingly well.  He got cancer the first time when he was 10 and he said he's spent the past 8 years dreading cancer returning and he said once his fear was realised he actually felt the anxiety ease.  He said it soundeded really weird saying it but it made sense in his head.  He only got the all clear from his first cancer 2.5 years ago it was very tough going back to an oncology ward again.  He's going for counselling every week.  He's happy that he doesn't need chemo again.   I'm up and down.  I suffered awful PTSD from the first time round and I am still only coming to terms with all he went through when he was 10.  It was so traumatic, he was so seriously ill and nearly died.  This time I started looking after myself straight away - started counselling straight away, spoke to the gp etc.  This time round is different as he's not as ill, he's older and probably because we've been through it before.

    I must join the carers forum.  

    Thank you for taking the time to reply, I really appreciate it.

  • Hi Pearjamno1fan,

    I was so sorry to read your post about your son.My heart goes out to you both I can only imagine how challenging life has been and continues to be.

    I am 56 just had a very rough 8mth battle with T4 tonsil cancer spread to several lymph nodes .My youngest son is 18 and currently undergoing tests for his reoccurring tonsil /immune issues as hes ill every4-6 weeks and as a parent you worry when your child has any illness,so for him to have cancer twice must be overwhelming…xx

    Sorry I dont have any information on larotrectinib it sounds like his team have a good plan to treat himIFingers crossedFingers crossed was on a trial for immunotherapy but didnt recieve it ( had 7week radiotherapy and 2 overnight chemos).

    You and your son sound amazing…. I hope the counselling supports you both and the gene therapy works well so the surgeons can remove the remaining cancerFingers crossed

    Thinking of you both

    Debbie x

  • Hi Pearljam

    I am so glad that the counseling is helping you and your son. Recovering from such an awful experience really takes time. It is hard to move on but sounds as though you are getting there.

    I am glad that your son is not feeling ill. It is strange isn't it that cancer can get you when you feel perfectly healthy. That was the same for me. It was just picked up when an ulcer I had on my gum wouldn't heal.

    I know exactly what your son means about his anxiety easing after having his diagnosis. The worry can really do your head in. When I had my third occurrence of jaw cancer I was in the head space of 'I have been here before so know what to expect, can't be any worse' and I was also so relieved that I could not have anymore radiotherapy as that was worse than the op.

    I needed some emotional support after the second cancer diagnosis  which did make a big impact on me, but the support I had really made a big difference and when the third occurrence came along I just seemed to take it in my stride. 'Been there, done that let's get on with it. '

    Funny how we cope with things. Everyone is different. I am living a really happy life now albeit with some long term effects but nothing I can't handle.

    I wish your son all the best for his treatment. You are such an important part as his support network. He is so lucky to have you. Do make sure you take some time out for yourself as you know from previous experience the road can be tough and all consuming. Your mental health is really important.

    Lyn

    x

    Sophie66

  • Lyn you sound amazing, going through this 3 times.  You appear to have a great outlook despite everything.  My son sounds very like you!

  • Debbie, thank you for your reply.  I hope you're recovering from your treatment and I hope your son will be ok.  We have an excellent team - he's in a young adolsecent unit so thankfully he didn't have to go straight from paediatric to adult services.  They look after 17-23 year olds.  So his oncoogist is working closely with his paediatric oncologist and they have the help and advice from the adult cancer services.  They've contacted different specialists in different countries for advice so I know they are doing all they can.