Recent diagnosis for husband

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I am completely blindsided by this. Husband (56) got diagnosed in Thursday following a preventative test that he got due to his age. No symptoms whatsoever and he almost didn’t do the test. Completely blindisided by result. I think we were too shocked to ask any questions when we were told. We’ve got two young girls (14 and 11) who we’ve not told yet. A sample was taken for biopsy and he has been told he will get a CT and MRI shortly. Do we ge the biopsy results before this to tell us staging? Do we need to wait for the biopsy CT and MrI before the MDT will discuss and recommend treatment? Is there any advantage of going private (I’m not slating NHS - their cancer care is wonderful- I’m just wondering whether we can accelerate the results / wait for tests). All my girls are talking about is our summer holiday in 4 weeks time. I’m assuming this won’t be possible. I’m genuinely devastated. My husband is the fittest and healthiest he has been for years. I’m just can’t believe it. I’m sorry I’m rambling. My heads a mess. Xxx

  • Hi  and a warm welcome to the board. Yes it’s a shock but bowel cancer is notoriously slow growing and very treatable. The biopsy will confirm the cancer 100% but if I’m honest, the people doing the colonoscopy know what they’re looking at and wouldn’t have told you it was cancer unless they were pretty sure.

    The CT and MRI are standard and will provide the MDT with all the information that they need to get a treatment plan in place. They can usually give you a pretty good idea of the staging from the scans but the final staging will be taken from the histology report after the tumour has been removed. 

    Most people stick with the NHS treatment and I don’t think I’ve read any cases where going private has been better? Personally I would wait until you have the treatment plan in place before telling your girls? I was told at my first appointment that they were treating me with a ‘view to cure’ which was reassuring to tell family. 

    Treatment can take a few weeks to get started so you may still be able to go on holiday although the travel insurance may be difficult if you were planning to go abroad? I had 5 weeks chemoradiotherapy then a break before surgery and I went abroad during this time.

    I’ve attached a link to a booklet that I was given at my first meeting and also a couple about talking to children

    https://bowelcancerorguk.s3.amazonaws.com/Publications/Bowel_Cancer_UK_Your_Pathway_V10.1.pdf

    https://www.macmillan.org.uk/cancer-information-and-support/diagnosis/talking-about-cancer/talking-to-children-and-teenagers

    https://www.bupa.co.uk/health/health-insurance/bupa-cancer-promise/understanding-cancer#:~:text=Our%20booklets%20are%20full%20of,readers%20they're%20not%20alone.

    Once you have a treatment plan in place then things will honestly feel a bit better. Please keep posting and we’ll answer any questions and help you both through this

    Take care

    Karen x

    ps the support desk is also available for a chat and advice

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Karen thank you so much. My head is just swimming atm xx

  • I know - it’s such a shock isn’t it? Try not to get too far ahead of yourself and stay away from google - it can be scary and misleading. There is a lot of treatment for bowel cancer and a lot of success stories on here - I was diagnosed in 2016 and in still cancer free. Keep posting and we’ll help you through this x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Thanks Karen - that first leaflet was really helpful.  I guess in my head my fear is that is has spread elsewhere.  Will we know that after the CT?  Do you get results on the day of the CT scan or do you have to wait?

  • Hi  Glad the leaflet helped. You will have to wait for the results of the CT scan. They are usually discussed at the MDT (multidisciplinary meeting) where all the various consultants will decide on a treatment plan then will meet with you to discuss. I had something that they wanted to check up on in my liver so had an MRI but it turned out to be a harmless haemangioma which are apparently very common but you only find out you’ve got them if you have a scan!

    I remember them telling me that there was no spread and then I missed the next few minutes but hubby was a bit more alert. 
    Sending you a big virtual hug and try not to let your thoughts run away with you - I know it’s tough but once you have a plan in place then you’ll feel a bit more in control x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Dear G/L

    I was 57 when diagnosed and like your husband had no symptoms.  The hospital will arrange all scans etc and they come quite fast, but they tell you little, don't bother asking the radiographer for information they're trained to do them not interpret them.  The scans etc go to the Mutti-Disciplinary Team (MDT)  You will be experiencing VERY long days & even longer nights at the moment.  Get in touch with your GP, they will be informed of the diagnosis.  Get a prescription for some sleeping tablets, I'd never taken one before, or since and the ones I took I'd split in two.  All prescriptions are now free for him.  DO NOT GOOGLE ANYTHING.  You'll be desperate for information,  it is not to be found online, there's some weird & not very wonderful information on there.  

    My diagnosis was mid-December,  the MDT meeting was between Xmas & New Year and I met with the surgeon very early in Jan.  That was when I began to find things a tad easier, largely because they outline a treatment plan.

    Prepared to be irked by some random things, when I was diagnosed the radio kept telling me 'it's the most wonderful time of the year, ' well it didn't seem so to me.  Also you'll become aware of the number of 'cancer adverts' they are everywhere. 

    I'm beginning to ramble.  I wish all the best to you and your family.   If there's anything you want to know or ask please do so

    YNWA 

    Mike

  • Thank you Mike for taking time to reply. How are you now? 

    We’re both trying really hard to keep busy and positive as he has no symptoms and was diagnosed early ( we think). He had a test 3 years ago and was fine so hoping we have caught it early. 

    We’ve not told our girls - and won’t till we know the treatment plan. Although all they are talking about is our holiday in 4 weeks so that’s going to be tough. 

    hes the fittest and healthiest he is ever been so when we’re being positive we’re hoping that he can and will get treated quickly and easily. 

    but then at night those horrible dark thoughts come . . . . 

    as others have said it’s the not knowing that is so painful. We hoped to have heard re a CT appointment today but we didn’t. So we’re in that limbo stage trying to keep each other positive.

    I do hope your treatment is /was successful and thanks again for replying. If you’re comfortable I’d be grateful to hear your treatment as it’s a very similar situation to my husbands. ( I know everyone is different but the more positive outcomes I read about, the more positive we can stay). 

    thanks mike. 

  • Hi Goldilocks,

    My husband was 48 when he was diagnosed with stage 3 Bowel cancer and at the time our children were 8 and 13. I like you was petrified of telling them, but they are so much more resilient than we give them credit for! 
    in the end we told them the truth as we knew it at the time and they were amazing and actually broke some of the difficult taboo conversations with matter of fact comments that we could help but laugh at! He ended up with a stoma after his surgery so I leave that to your imagination about what my 8 year old came out with about that which sent us all into hysterics (toilet humour is always a winner at that age!). 
    I’m not gonna lie it has been tough but they will also help you through it I’m sure. Sending you and your family lots of positive thoughts and love x

  • Hi  I just wanted to add that if you click on peoples names then their profile page will sometimes show their treatment timeline? x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Good morning,

    I was luckier than you in two ways, our two sons were just 20 and our daughter 24, so we told them on the day of diagnosis.  Secondly my wife is a Dr, so had a useful knowledge base.  The gathering information by the med. professionals seemed interminable, in fact it took about 3 weeks, but as you've discovered 'real time' is now meaningless and time becomes extended.   In the meantime we just carried on doing what we usually did.  I live in Liverpool,  it's not a city where you ask if someone likes football it's a simple, 'You red or blue?'  We're red, firmly red.  It was still the one thing we did as a family.  I'm in the Kop with son 2, my wife in the Main Stand with our daughter and son 1 in another section of the Kop with his g/f.  The 'Jurgen revolution ' was just beginning to have it's effect.  The wonderful Jurgen said, 'Football is the most important of the least important things.'  So we carried on going as usual, watching as usual and talking footy as usual.  

    Xmas merged into New Year and I had my appointment with my allocated surgeon.   That, in retrospect,  was a real boost.  I received what you are desperate for, accurate,  relevant information.   I'd advise leaving your husband free to just listen, take a pen & pad with you to note down any information, especially letters & numbers.  Before that meeting keep a list handy, write down ANY questions you have, you can edit it to what you consider important prior to the meeting, but it's a simple way of not forgetting what's key to you.

    You'll have been allocated a Colorectal nurse, find out their name, tel. number and/or email; they are very useful people, especially for chasing appointments.  I had a date for surgery at the back end of January.  The Sunday before the op Liverpool won a thrilling 4-3 match against Man City and as we left Anfield I remember looking round the ground and having simply no idea when I would see it again.  Wednesday came and I went into hospital at around 7.00 am, the first time I'd ever been in hospital in my life, I was even born at home.  The real star of my the show was the anaesthetist, he was wonderful,  funny, reassuring and caring.  He asked me what my immediate post-op aims were, that was easy, 'Get back to Anfield.'  I awoke several hours later, knowing where I should be but thinking I was still asleep, I could see a stunningly lit Anfield against a clear  black January evening.  The Colorectal ward in the 'old Royal ' had a great view of North Liverpool, I was in a bed with a clear view of LFC; nice one Sir.

    Surgery was far easier than I expected, and I'm at the 'whimp end' of any pain scale.  I went in on the Wednesday and came out on the Saturday,  thanks totally to the wonderful skills of the surgeon & her team.  A week later I hobbled from the car to a local restaurant at lunch time to celebrate the birthday of our sons, I managed two American pancakes.  The most painful moment was about 10 days after surgery, I'd persuaded my wife to go with the family to the Spurs match and I watched from home.  Mo Salah scored a wonderful 'injury time winner' and I leapt up from the sofa in delight; that hurt, really hurt.  

    Recovery is quick. A month to the day of the op I went with 3 of the family to the usual parking space, walked the 1 klm to Anfield and watched Liverpool destroy West Ham.  The 6 years since then have gone quickly.  We have travelled widely, Inc Antarctica.  As a family We've seen our beloved LFC win League Cups, FA cups, European cups, World Club cups and most importantly of all, become Champions of England; life's been good.

    Yes, I wish it had never happened,  but in retrospect it was nowhere near as bad as I would have imagined.  You are definitely in the worst time now, post diagnosis pre-treatment.  You say he was 'clear' 3 years ago, bowel cancer is a slow growing tumour, so that bodes well.  As for travel ask the colorectal nurse to find out what your surgeon thinks, my wife & me had been to N/America a week before diagnosis,  it affected nothing.

      I said don't Google anything,  we'll watch two things on YouTube, 

    1.  The wonderful,  wonderful Barcelona night at Anfield in 2019 when LFC proved miracles DO happen and Mo wore his iconic, 'Never give up,' t-Shirt

    2.  Jordan & Brian Henderson celebrating the 2019 C/L win.  Brian had had throat cancer and had a really tough time, it's a picture of pure delight & joy.

    Keep In touch

    YNWA

    Mike 

    (PS - Jurgen, two words, 'Thank you')