My husbands Bowel Cancer

Hi Everyone

I'm Vicky and new to this site. My husband James had an operation back in January this year to remove a tumour from his bowel. The operation went very well and the surgeon was able to say that they got all the cancer out and removed some lymph nodes near the site to be extra sure. Everything was going `hunky dory` and thinking we could put everything behind us until last Saturday when he received a letter that just about floored us. He had been going to his follow up appointments and met with his surgeon earlier this month and she examined him and took some blood samples. In the letter it said that the chemical in potential bowel cancers had risen slightly and that the CT scan they had scheduled for him near the end of this year will be brought forward. I was able to speak to the specialist colorectal nurse on the phone today and she was able to tell me that the cancer markers where the chemical is present had risen `slightly` but in saying that it may not be to do with the cancer but maybe related to something else but they can't ignore it and need to keep on top of it incase again it is something they can catch early.  She said its something that happens a lot and they don't know why it happens which is why they need to keep on top of it. His Bowel Cancer lay dormant for 3 or 4 years he was told and luckily didn't spread and stayed localised and was about Grade 1 or 2 the surgeon said so there was a lot that could be done. So he had been carrying it around all that time and didn't know and symptoms just surfaced about 18 months ago.  So this has set him back a good bit as he was doing so well getting his mobility back etc. Its only been 4 months since his operation though so there's still a little way to go I think. He is beginning to withdraw right into himself again as he did last year. Ironically it was this time last year all his trouble started. He has also been complaining of dizziness and feeling a bit nauseous too and having a dry mouth. This has put him off his food slightly he is still eating but not as much as usual but then he has had a bit of his stomach taken out so maybe he can't tolerate huge amounts of food now. He has to wear a permanent stoma bag too now which at times gets `very active` so he knows that's working ok. I am just hoping and praying its not history repeating itself and what they find will be something that's `fixable` until that time we will just have to try our best to stay upbeat and busy.

  • Hi 

    Your husband is not alone .I think it’s about the third post this week and others are facing the same situation. In bowel cancer they track a protein marker called CEA . But other things can influence it . Around 50% of CEA spikes are false positives . 
    https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/diagnosis/239750/managing-your-follow-up-cea

    This thread gives some pretty good advice.

    Can I just ask if your husband is currently on chemotherapy as that can influence it too? 

    However catching something early has literally been a life saver for my mum and they nipped things in the Bud whilst they were still small .

    Hope it’s absolutely nothing of concern .

    It can take a while to find out what influences individual CEA markers .

    Take care ,

    Court 

    Community Champion Badge

  • Hi PattyK

    I’m sorry you’re going through this, many here have a similar story. I found it comforting to know others had a similar 

    it sounds really positive that your husbands team are monitoring and following up with any concerns. They will have a plan 

    the one thing I’ve noticed here that although  we may have similar backgrounds our experiences with treatment vary. They seem to be on the watch for every change in the individual and then plan an attack against the cancer 

    what stoma does he have? I’m an ileostomy and suffer with a dry mouth. Usually because I’m dehydrated. Eating is an adjustment with a stoma as I had the continual thoughts about blocking 

    It takes some getting used to and confidence does resume. 
    I hope all goes well. 
    Keep us posted. If you click on peoples names you can read their back story 

    Best Wishes

    Artsie Ann 

  • Hi Court!

    No my husband isnt on chemotherapy just now. All his treatments have finished and he is just going for follow up appointments now. All his appointments are scheduled for the the end of this year well that was until we got the letter telling him his chemical levels had gone up now they want to bring forward a scheduled CT scan that was to be at the end of this year also. He was doing really well with his recovery but now mentally as you can imagine I feel he is going to withdraw back into himself again as he did this time last year when all his health troubles began. His surgeon was very pleased with his progress until she took bloods from him at his last appointment and it showed that chemical increase. He was to see her again in September, his stoma team in October and his Oncologist in November. We really do hope this is nothing of great concern. Great though that they are acknowledging it and pick up things straight away. We will try our best to keep positive but as you know sometimes that's easier said than done.Slight frown

  • My mum has had two false spikes and scans were clear ! Hoping it’s the same with your husband . At the time the anxiety is overwhelming . I feel for you both but it can be really unreliable.

    Hoping for the best !

    Court 

    Community Champion Badge

  • Thank you Court! That's encouraging news for you mum. As you say hope its the same for my husband. 

    Take Care 

  • Ive,come across so many similar situations. Its,like every patient is different, no set outcomes. You can.read my profile. I believe my cancer was slowly crawling throughout me for 10:Years and 5 Years of signs before a true diagnosis was known. All usual markers didnt raise suspicion. Ct, colonoscopy, etx all normal.  I honestly take each day now as it arrives with gratitude.

  • So sorry to hear that Tony!  Good Luck To You! Just shows my husbands cancer sat dormant for 3 or 4 years he was told when finally diagnosed but was in the one spot localised and hadn't been anywhere else or was going anywhere else so they managed to catch it in time. He was never one for going to doctors/hospitals (making up for it BIG TIME now) he wound never do those NHS bowel screening home tests you get sent every few years in the post. Just shows embarrassment almost cost him his life. I did one of the bowel screening home tests a few years back and it came back I needed a colonoscopy. It turned out I had bowel polyps which were benign but they removed them during the colonoscopy because they said they could have become cancerous if left there. Since then my last couple of bowel screenings have been clear. Ironically I had recent cervical and breast screenings done they have both came back clear. I'm almost 60 years old so I'm taking that was my last cervical one because they get done every five years. I've really had my fill with cancer and just wish it would leave us alone now. My sister who is 70 had the start of breast cancer 3 years ago and again they caught hers in time. My mother had bowel cancer she lost her fight with it though. My dad had metastatic lung cancer most of his however was self inflicted because he was a very heavy smoker chain smoked a lot and he developed COPD. My husbands brother got taken by oesphegal cancer and he was about the same age as my husband is now 68 when he passed so this worried me a lot when my husband got diagnosed with his cancer all that was going through my head was `he's next` because we lost my mother in law 4 years ago it was just old age with her though she passed aged 96 and his dad passed 26 years ago think it was cancer that took him too and my sister in law passed 5 years ago from a disease called Idiopathic Lung Disorder basically it was to do with her breathing and her lungs gave in in the end Do you mind the TV presenter Keith Chegwin that passed away she had the same disorder he had. So cancer is definitely no friend of mine or anyones for that matter I think.