Adenocarcinoma diagnosis

Hello all,

So, I've not had such a great telephone call today. 
 

Bit of background, I'm a 49 yo male, had a Ewing's tumour in 1986 (13 yo). Year of chemo and major surgery. All good since. Well, no cancer but a whole load of other life challenges that I've overcome. 

Had some swollen glands on my neck about 10 months ago but took little notice as no sinister symptoms. Still training hard in the gym weights/cardio. 

Covid in July caused my neck glands to become sensitive. GP booked and assessed. Due to my history he did an urgent referral. Full bloods, bence Jones urine and chest X-ray all 'normal, no action'. Delightful words.

Ultrasound found 'something' so had a FNA biopsy. Was told today the cells are malignant. It's metastatic carcinoma. They're sure original site is submandibular gland.

Core biopsy on 30/8. This will determine how slow/aggressive it is. The lead nurse has informed me that treatment is surgery. 

As I'm sure you can imagine I am devastated. Angry too. Rest of my health is good. Strong and decent cardio for my age. 

Just wanted to offload as sat at home on my own thinking how I'm going to break the news to my folks. 

Not sure if I want to ask if anyone else has been through this but I will. Anyone else had this diagnosis? 
 

Thanks 

  • Hello Stupot-notmyname

    I'm so sorry to hear that you've been diagnosed with cancer for the second time in your life. It's understandable that you're feeling angry and devastated by the news. 

    Undoubtedly this period of uncertainty whilst you wait for your biopsy and the results will be difficult. There are so many unanswered questions at the moment and it's natural that you may be feeling a real rollercoaster of emotions. 

    I wonder if you might find it useful to chat with our team of nurses ahead of your next few appointments. I'm sure they will be happy to offer any information and support that they can along with helping you think about the kinds of questions that you might want to raise once your results are back. If you'd like to chat with them they're available Monday to Friday 9 am to 5 pm on 0808 800 4040. 

    I hope that your appointment next week goes smoothly and that you don't have to wait too long for answers from the MDT regarding the next steps. Keep in touch Stupot and let us know how you're doing. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Hi Jenn, 

     

    Thank you for your reply.

    Yes, pretty naff to say the least. Plenty of uncertainty and the biggest thing for me is the 'loss of control'. I've re-lived  lots of 13 year old me's the last 2 days. Incredibly emotional and unfortunately been on my own. 

    MDT will likely be 8/9 at Tooting once results are back. I know who my surgeon will be and he works out of a private hospital where I work. I'm in good hands and feel like I'm being taken care of. 
     

    I'm fortunate enough to have a lovely nurse from the head  & neck clinic who is supporting me. We've spoken over the phone each day and she will be present on Tuesday afternoon for consultation post core biopsy. 
     

    I have to find out my MRI results and also have a staging CT scan. Not looking forward to either if I'm honest. Positives are  that I'm strong and training harder than I usually do in the gym. This hasn't changed in the last 5 years. Plus, no sinister symptoms which I have to take as positives. It is really hard to see these as positives considering what I've been told but it is positive and I have to hold on to this. 

    I'm being supported really well by my Uni. Talking has really helped. It was a bad day yesterday trying to make sense of things. I don't expect this to change in a hurry but I'll keep focusing on things I can do and have control over. 
     

    I'm waiting for a call from my nurse atm but will your nurses be available on BH Monday? Would imagine not but thought I'd ask. 
     

    Im traveling to see my parents next week to tell them which wlll be incredibly difficult. 
     

    Stay strong everyone!
     

    Thanks Jenn

     

  • Hi Stupot-notmyname

    It's understandable that you've been reliving a lot of your experiences as a 13-year-old over the past few days. I imagine that your folks will also go through the same kind of experience when you're able to see them next week. What I would say is to talk to them and others around you. It's good to know that you have a supportive specialist nurse and that Uni is looking after you too. There's lots of good support and advice available so make sure you use as much as you need. 

    That support is also available for your parents so do let them know that they can reach out to our nurses, the Macmillan team, or Maggie's. Hopefully, if you know that they have access to support then it will help you as well. 

    Despite everything, it sounds like there are lots of positives in your situation. It can be difficult to keep hold of those positives, but I know that many of our members will agree that focusing on those positives can help when you're going through this process. I'm sure that your current level of fitness and otherwise good health will help you in your recovery. 

    Unfortunately, our nurse team is now out of the office until Tuesday but the Macmillan support line is open 8 am - 8 pm 7 days a week so don't hesitate to call them if you need to talk things through with someone. Don't struggle on your own over the weekend. We are also here if it helps to have a safe space to offload some of what you're dealing on the forum. 

    Hopefully, in just under two weeks, you'll have some idea about what this is that you're dealing with and what the next steps are for treatment. The unknown can be a scary prospect to face but many people feel that once that information is given to them that things are a little easier to deal with.

    Keep in touch and let us know how things go. Once you've got a better idea about your diagnosis and the treatment plan we can try and link you with some other community members who may have been through similar surgeries/treatments. 

    Lastly, be kind to your Stupot-notmyname. Take each day at a time. If a day feels like too much then try hour by hour. Keep busy and keep away from the dreaded Dr. Google. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Hi Jenn,

     

    Thank you for the info you provided. I have accessed MacMillan today and had chats with 2 nurses who were really helpful. Signposted me to 'How to break news to loved ones' & 'Asking the medical team the right questions.'
     

    I had some other news from the head & neck nurse. I have dates & timeline of MDT meeting and surgery. I didn't expect to get this. It gives me some control back as I feel very much out of control. 
     

    I will likely repeat myself but I have a Staging CT on 30/8 as well as core biopsy and appt with registrar & head and neck nurse who will formerly diagnose me. Letter will be put together. 
     

    I visit my folks on 31/8, return on 7/9. MDT on 8/9. Surgeon will be present. I meet her in the afternoon. Surgery on 26/9. I have a timeline to give my family. 
     

    The nurse said she will be happy to have a speaker phone chat with my parents, when I'm down there, to answer any concerns or questions. It also takes the pressure off me. 
     

    Uni were really supportive yesterday after i met with one of my lead tutors. Their focus is supporting me and ensuring my health is a priority. I also met with Chaplaincy; not because I am religious but I wanted someone calming and reflective to talk to. They've offered zoom support as well F2F. 
     

    Once I return from visitingy folks, I'll attend the MDT and then meet my tutor and Reverend on 9/9 to update. 
     

    I'm still incredibly emotional which just hits me out of nowhere. Ended up propped against the wall hugging a CIF bottle earlier. First time for everything. Went for a walk into town to get shopping. Was fine. Got home and unpacking my bag when I just lost it. No doubt there will be more of this. This is ok though. 
     

    I also wrote an email to Maggie. I'm not far from the xxxx in Sutton where they are based. Will look to attend there once I return from visiting my folks. 
     

    I'll be calling MacMillan again tomorrow and Monday just to offload. So helpful. 
     

    I haven't been on Dr google since Thursday night. Never again. If I want facts I'll call MacMillan. I will also be telling my family to access them and not ask Dr Google 

     

    Thanks for your support, Jenn. Really appreciate it. 
     

    Besf wishes 

  • So sorry to read this . I have just been diagnosed with colon cancer. The fear of having to tell my mum is breaking me, as a family we have been through this scenario so many times and I have always pulled my mother through. When we lost my nephew 10 years ago I always remember her face and the pain we all went through as a family ... I hate the the fact I'm going to be the one causing so much pain to her...her face was bad enough when I broke my hip last week and I know she will try and put brave face on I even delayed getting my results by a couple of days as I wanted her to go to France oblivious to the nightmare awaiting her . I can't sleep or eat or settle . Sorry for off loading on you . 

  • Morning Baked Bean,

    First and foremost, absolutely no need to say sorry for offloading. I welcome you sharing your concerns as this is the place to share them. Keep offloading ok? I'm going to keep on coming here and documenting every meeting I have with medical staff, how things go with my folks and one of my brothers when he comes back from his holiday & anything else related to this *** situation I'm currently in. I will not worry about offloading or repeating myself. Me and my family have an incredibly tough time ahead. We will overcome this! 
     

    I cannot sit with it in my head. I have to get it out. Either here or talking. 
     

    I'm really sorry to hear about your diagnosis. Do you have plenty of support? 
     

    I'm single, don't have a huge number of friends. I have more work colleagues who I don't spend anytime with Jenn, one of the nurse administrators on here has provided me with some links to contact so it's what I've done. I spoke to MacMillan 3 times yesterday so I could repeat myself over and over again to try & make sense of things. This really helped. Thank you for that number Jenn. 
     

    After talking at length with the nurses and one of my brothers, despite it only ever going to be such a horrendous and emotional thing to tell a parent/parents what we have to, all they'll want to do is hug us and support us in any way they can. I'm in tears now. Out of nowhere. Mere mention of my Mum does it. 
     

    The weight I'm carrying during FT'ing my Mum & Dad telling them lies at the moment is f****** a breaking my heart. I have to do it though. It's not fair I have to but this is my situation. I feel totally out of control but being able to break this news gives me some control. 
     

    I need them to see me in person to see I'm still built like a rugby player at 16.5 stone. I am. Been to the gym the last 3 days doing what I've been doing the last 5-8 years. There is no change. 
     

    We are in this together, Baked bean. If you want to talk via private message on here, I'm ok with that. We might be able to help each other but there is no pressure ok. 
     

    Accesss the MacMillan nursing team who can give you some space to chat and be heard. They offer some great advice. 
     

    We are not alone in this, friend

     

    All the best 

  • Hello Stupot-notmyname

    I'm glad to hear that Macmillan has been able to give you some support over the weekend through their helpline. It sounds like Uni is being very supportive so that's really good to hear and I'm sure knowing that you don't have to worry about the course and deadlines is one less ball that you'll have to juggle. 

    It's great that you have a timeline for your treatment now. People often find that this helps as you have less uncertainty. What I will say is to remember that sometimes, through no fault of anyone, these timelines can change so just keep that on your radar as well. 

    I wanted to wish you well for your staging CT tomorrow and of course, I hope that your visit to your family goes as smoothly as possible. It's good to know that your nurse is happy to talk to them whilst you're visiting. I'm sure that it will help them and you. It's not going to be an easy week by any means but you can visit them this week and tell them - this is what's happened and this is what the plan is. It sounds like you're a close family and I'm sure you will all be there to lean on each other over the coming days. And of course, in amongst all this, do try and do some nice things together as a family and enjoy spending time together. 

    Safe travels Stupot-notmyname and keep in touch. 

    Best wishes, 
    Jenn
    Cancer Chat moderator