We have a diagnosis - of sorts

Well. We got the worst possible news today.. husband has cancer in the lower oesophagus. There's a definite tumour that showed up on the ct, but not the endoscopy (is that normal?). The consultant said they saw 2 inflammation spots on the lungs, but thought they were just infection if he had aspirated some reflux recently, (which is entirely possible).

He has to wait for an appointment for a pet scan to determine the grade/stage of the cancer or of its spread anywhere else.. hopefully that should happen in the next 2 weeks..

To say we are gutted would be an understatement especially having to tell his 2 girls (17 & 15). Husband is only 48, we only got married in January.

We came home from the hospital today with a macmillan information book and bags full supplements. I'm also making it my mission for him to not lose any more weight so the fridge is stocked with full fat milk, double cream, butter etc (all as per dietician's advice).

We'll know more with the pet scan and what the treatment options will be from there (op&chemo/ chemo&op&radio). However hubby is determined he's fighting it tooth and nail, he said there's no way he's leaving his girls or me behind!!

Thing is he doesn't look ill, he doesn't feel ill. When he manages to eat he's "normal". I just hope on hope that we caught it in time. I know that symptoms present a while after the cancer has set in and by then it's sometimes already progressed. Although the weight loss has been happening since end of January the choking symptoms etc presented May time and the 1st gp appointment was June.

Again. Thank you for reading. I would imagine I'll be on here quite a bit for advice when the treatment starts. (I actually feel better myself having written all this down). Thanks again.

24 Replies

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  • Lucy,

    This is the hardest part, the tests & the waiting, there will be a lot of crap going on in your head but other then feed him well there is very little to be done. I always expect the worse but hope for the best. I try & talk about my concerns & be honest with how I am feeling. Until you actually have the full picture & the medical teams proposal for treatment it is a waiting game which is very frustrating. Really try & fill your time with fun things etc & leave the worry & action until you get the results, & yes I know it's easier said then done. I have my first annual CT scan end of this Mongolia & already I am preparing myself. Will discuss results 12th September with my medical team so 2 wks of frustrating agony which I will be filling with visits to friends, cinema, lots of work mtgs etc.

    I will be routing girls you & your husband hoping it's the better bad news, if there is such a thing.

    Z

    Xx

  • Hi Lucy

    I had all these things tests, PET scans, CT scans & I had the Ivor Lewis op in January 2011 & I am still here & I lost 2 stone to start with but I have managed to put it all back on & more besides !

    I know it's a hard slog which it is, but all will be OK in the end, & I was a lot older than your hubby as I was in my sixties at the time.

    Will be thinking of you & all the best for his recovery (which took me nearly 12 months after the op) so don't get too downhearted when things seem to be going slow!

    Cheers

    Jan

  • Lucy

    Try turning the diagnosis into a positive. Without it he would die. Stark but true. I was 57 with two teenage daughters when diagnosed and in the opposite way to your husband. Mine was seen with an endoscopy but missed with the CT. I had no spread (as shown on the PET scan) but was very lucky indeed as I was by this time bleeding heavily internally, after months of being sent home as "ok" from my GP.

    You are passengers now and will be bounced around a bit as the various medical teams gather the information that they require. Stay positive and focused on the end goal = Surviving this.

    Write down your questions for the surgeons/consultants and never be afraid to repeat or ask anything. As my surgeon said to me "it is your life and your body. Ask anything including second opinions"

    The most likely treatment (if the PET scan is positive) will be chemo> a break > surgery > a break > chemo > recovery. It all happens very quickly, which is good. I was diagnosed in late May 2014, had my surgery in early September 2014 and finished my last chemo on Christmas Eve 2014. I only spent ten days in hospital for the surgery and my treatment was described to me as fairly typical. I did have a Transchiatal Oesophagectomy, so no broken ribs and a fairly short recovery time.

    I am now back working full time in the City, playing Golf every weekend and loving my beautiful wife and daughters more than I ever thought possible. I no longer drink alcohol (my choice) and eat well, if small amounts. Outwardly I look better and fitter than I have since my teens, and feel better and fitter than I have since my teens. I weigh the ame as when I was fifteen and am healthy on it.

    This site can be a wealth of knowledge and inspiration. I would urge you to keep reading and asking on here. Google is full of negatives. Ignore that. People gravitate towards the negatives. Most on here are survivors and doing well. A testament to the skills of the wonderful surgeons and medical teams out there who give everything for us.

    As already said. This is a terrible time for you all. Turn it around and talk only about "when" you get better and what we are "going" to do. My daughters bought me some of the best hats a man could have in every imaginable style. I wore them all with a smile and pride and love.

    I wish you well. Hang in there and you will get there.

    Bruce

  • Bruce.

    Thank you so much for your positive, uplifting reply. Its good to know there is light at the end of the tunnel. We are just feeling a bit in limbo at the moment, we know what we're dealing with, but we don't know how we're dealing with it (yet).

    I think I'm all cried out between last night and this morning (I'm done, for now anyway) and your reply has helped me get my butt in gear and put things in to a positive perspective.

    This journey has just strated!

  • Lucy

    I sense you have a great attitude. My wife was amazing for me as were my daughters and they still are. I think we all crumble at the initial diagnosis. Do not let worry you. It is a long and a tough fight but you can do it. I found the nights very difficult at first as I just kept replaying all my fears over and over, then not sleeping so spending the day being tired. On a visit to my Onclogist (in the very early days) I managed to read his writing upside down on his desk ;^) I noticed he ticked a box that said 'Cure" Astonished I asked him if that was me? He just smiled and said "yes" that is the intention. That was the first time I had seen "cure" written down and it was an amazing feeling. I started to fight from that point on and was determined to survive, knowing that the medics felt I could.

    It is a strangest of diseases. As I was told "you are perfectly healthy Bruce, apart from your cancer" and there is the truth. So having the cancer removed is the only obstacle ;^)

    Good luck. Be strong have a group hug and buy some silly hats for the chemo.

  • Sorry to hear of your diagnosis. My husband was diagnosed at the end oh June. Oesophagus cancer lower end, stomach clear but spread to liver bones and lymph nodes. They've given him 4-12 months and only offered chemo (we started that last week). In the gap between diagnosis and starting chemo we did a lot of reading to see if we could do anything to keep him generally healthy (to tolerate chemo better) and hopefully make his body an environment the cancer didn't want to live in. Oncologist was useless in offering help in that respect saying "Eat what you want, just enjoy yourself, plenty of cheese and eggs cos if you don't feed the cancer it'll feed off you". However we've found he does best (energy good, weight loss stops etc) and feel a well on a vegan diet with green tea and dandelion root tea. Check it out for yourselves. Everyone is different but hubby feels the congestionin his chest (the main tumour) has shrunk although we won't know until next CT scan. Good luck. There's plenty of support on this site. You are not alone.

  • Thanks for your reply Sue. So sorry about your husbands prognosis. But if this has taught me anything so far it's that each and every single moment is precious whatever the specialists say the outcome will be. Was your husband not referred to a dietician? We saw one yesterday as part of the diagnosis team. Hence why the fridge is looking the complete opposite to how it normally looks with full fat everything in there. We've been told to try and put weight back on or at the very least halt the weight loss.

    I hope your husbands treatment goes well and that the tumour has shrunk.

    And your right there's so much advice and support on thisee pages.

  • Hi Lucy,

    Sorry to hear about your husband having to go through this so young.

    I was in your position with my Dad, when his symptoms began last September.

    My Dad is 56 so not much older than your husband.

    My Dad's symptoms began with food getting stuck and him bringing some things back up with the white foamy stuff that most people talk about.

    After being sent away from the GP a few times with heartburn medication, we finally went for an endoscopy which revealed the tumour. After numerous tests, including biopsies, CT scan, PET scan, laparoscopy, ultra sound endoscopy and more, they finally decided that my Dad would be treated with 3 rounds of chemo, Ivor Lewis op, and then 3 more rounds of chemo, as the tumour was at the junction of his Oesophagus with no spread detected by any of the tests.

    Despite symptoms first apprearing in approx September time, my Dads treatment didn't begin until January and this was a very difficult few months.

    He sailed through pre op chemo, (apart from one blip) and then had his op on the 18th may. A day I will never forget for as long as I live.

    He was in hospital for 13 days, 7 of those in HDU.

    His histology showed 5 lymph nodes were affected by the cancer out of the ones they removed during the op, so he is now 1 week in to 5 weeks of radiotherapy, and 1 round in to 3 rounds of post op chemo.

    He's taking a bit of a battering at this point, but we are all hopeful and trying to stay positive.

    A lot of the hard parts include the waiting around and the not knowing.

    Once you know what you are dealing with you can begin to do so, putting plans into action and focusing on the future.

    It's so so important for your husband to keep as fit as he possibly can, and eat as well as he possibly can, as the operation is a marathon and we are so grateful to the people on here who gave us this excellent advice because it meant my Dad was ahead of the game when going in for surgery and the surgeon noted that my Dad was fit and in good shape.

    Take one day at a time, and do all you can to help your husband prepare for the potential op.

    Keep posting here and you will receive amazing advice from the loveliest of people.

    Bruce in particular has been a great help to me over the past 9 months and I will be forever greatful.

    Amy x

  • Amy

    That is very kind of you to mention me. Thank you. That just brought a tear to my eye.

  • More than true Bruce! My family and I have more than appreciated all of your support, it has been such a help.

    Glad to hear you're feeling well too :-)

  • Bruce

    I totally agree with Amy regarding your posts on this site.

    I was diagnosed with OC in late April 2015 and joined this community then .I had 3 cycles of ECX pre op, then the IL procedure performed at the University hospital at Stoke by the brilliant Mr. Oliver Priest, then 3 more cycles of ECX Chemo post op. I have followed your posts from day one and you have been a constant inspiration to myself. Please keep up the "good work " and thank you.

    Thanks to Haward from the OPA (who I have met personally at the OPA MEETINGS in Birmingham) and Alan from the OPA .Their comments are also most interesting and helpful.

    Lucy the best of luck with the final diagnosis, many,many of us have travelled this lonely road ,remember you are not alone.

  • Thank you Amy. Everyone has been so nice.

    Do you mind me asking what the staging of your Dad' s cancer was please? x

  • Of course not, he has T3 N2 M0

    Well, hopefully had xxxx

  • Thank you... is just all about the waiting now. Hope your dad is on the mend x

  • Just wanted to say thank you to everyone who has wished us well as we begin the journey in what is for us the unknown.

    It helps to know that your not alone and that the battle can be won. I just hope on hope that the cancer is contained where it is an hasn't spread. Though thinking back to yestaerday the consultant did say the liver, stomach and pancreas didn't show anything. I know the pet scan will show things in more details though.

    Today he's been a star and has managed to drink 3 food supliments and a bowl of porridge made with full fat milk and double cream. We're are on this 100%.

    One thing I wanted to ask you all..The specialist nurse suggested drinking some hot water before eating to stop the foam stuff coming back up when he was eating. Has anyone heard of this or had success doing this technique?

    Thanks again.. you have all been truly fantastic. You words of encouragement, hope and butal honesty have gotten me over this 1st little hurdle.

  • hi lucy , im so sorry your husband has had the diagnosis no one wants to hear . the advice people have given on here is so posative and they have been there too so are the best people to advise you . i wanted to answer the hot water question .before i knew what my problem was with my oesophagus i started drinking lots of hot water before and after food . i never went anywhere without a flask and sipped away when i felt symptoms starting . its amazing what your body makes you do if you listen to it! even if you dont know why you are doing it ! it deffinatly helps me . does it relax the muscles ? im not sure but its worth a try . you sound a very strong family that gets you a long way . my dad 91 ,is a throat cancer survivor of 32 years and my mother 85 is 11 years colorectal cancer advanced survivor . then a broken hip two years ago when i said oh this time she wont bounce back ...but no, back gardening taking out the bins shopping for the old lady of 95 over the road ! husband accident 15 years ago lots of long operations but now dissabled, gave me the advice i follow as others have said on here , you can only fight the fight infront of you ,now i dont think past the day ahead of me because im all for what iffs and it does just exaust you .

    posative healing hopefull thoughts to you and your family .

    f

  • So sorry to hear of your husbands diagnosis. My Dad was diagnosed in January this year and I felt like my world was falling apart. You get through that initial stage though and that panic goes. The whole process is a long one so take each day at a time, try not to worry about things before they happen (difficult I know) because they are nearly always worse in your imagination than in real life ;-) My Dad was in hospital 7 days after his op and is now on his first week of post op chemo . He pretty much breezed through the pre op chemo and the op' (and he is 69 so no spring chicken!). This stage is proving more of a challenge for him with regards to the food issue..not having a problem eating or with hunger, just not really enjoying the food, but he will get through it and his tumour has gone completely, no spread to lymph nodes etc.. Make sure your husband keeps fit and keeps his weight up as that will aid his recovery more than anything else. He won't need any more incentive than you and his children to beat this xx

  • I was in the same position in June 2012 age 62 and went though chemo/surgery/chemo and was back at work from June 2013 (Plumbing) and I'm still working and have no plans to retire, I'm sure your husband will be positive, you must put your trust in the brilliant medical teams that deal with this all the time, let them do the worrying

    good luck

    I

  • Your post took me back to January when my husband was diagnosed. We were devastated, especially when we were told that the tumour was inoperable-he only had a bit of pain on swallowing and didn't feel ill at all.

    Long story short, after 3 cycles of chemo he has just come out of hospital after surgery and is recovering brilliantly. He even enjoys food, although he only eats very small amounts at present.

    So trust your medical team and keep as positive as you can. Good luck!

    Lou xxxx

  • Thank you so much.

  • Now that is a great story. Wow. What a result for you both hat demonstrates "never give up'.

  • Please have a look at my blog: innesart.blogspot.co.uk for my journey through this cancer. You will find it useful to see how another got the same news, how I and my family faced it and how we got throught it. I documented my journey and many will follow this route so I did it to help people like you and your husband and family. I too had young children and faced the things you will be facing, good luck, here for you if you want to chat.

    Kind regards

    Bryan Parker

  • Hi Lucy

    This is my 1st time on here and I wish I had done this a few months back had I known . My hubby too was diagnosed this year ! We moved home in January for the first time in 30 years after having a bloody awful devastating 2016 ending with losing my darling brother in law to Pancreatic cancer at the end of the year only to discover that a month later my hubby was having problems swallowing. I insisted we went to the GP and after repeat biopsies and endoscopy April 5th 2017 @ 1:40 we were told the news that if we're honest , deep down we knew.......that day I'll never forget....like everyone says ......it's like it's not you their speaking too ....not your loved one ....who could imagine that something not tangible could have the ability of totally destroying everything you thought you had and knew to be 'normal' in seconds!

    I won't tell you it's an easy ride but like for most part Even during Chemo (9 solid weeks of E.O.X ) he didn't look really ill ....he never really lost too much weight. He was sick quite a bit when food got stuck but the worst times was every third session of Chemo was a heavy dose he dreaded which affected his skin ...awful cramps and couldn't go near or eat cold food or drink as it gave his throat spasms.

    We had another 4-6 weeks after Chemo when he had to rebuild his strength before surgery and life almost for a while felt normal ! Then just over four weeks ago August 24th 2017 in Chelmsford he had a total Oesophajectomy and 2 field lymphodectomy for T3 adenocarcinoma at the Oesophageal/gastro junction. The surgery went well , we were told 2/3 days ITU then around two weeks on general ward as it's such major surgery.....after 6 days he came home ...in an awful lot of pain and on a 'soft diet' We had one or two issues and out of hours visits to relieve pain but apart from that all fairly ok .....until now. I don't wish to alarm or worry you but we were never told of any problems he could have post-op I would have like to have been more aware. He now can't swallow any food at all and even liquids are difficult..so much so that we cannot wait for the referral we are having to go to A&E. This is harder than the diagnosis ...it's never ending and I'm desperately sad for him and the stress is really getting to me ....all I want is for him to be able to eat .....we know it's only ever going to be 6-7 small meals a day but even that at this time seems an unbelievable grasp. He has to go through post-op Chemo again for another 9 weeks in a couple of weeks time and he's far too weak he won't cope ...especially as I have read that this time ...understandably....will be tougher..and he's dreading it.

    I have an amazing family and friends who have and still are very supportive, but no one understands what it's like to live with Cancer and how hard it is to carry on and keep smiling....my husband has always called it "a blip" and is so determined to fight it .........but it's really hard for the one watching at " ring side" too.

    Good Lucy .....keep smiling......if that fails I have a G&T !!

  • Hi Debbie. Thanks for this. I've replied to your post you put up earlier.

    Thankfully our oncologist and surgeon have been brutally honest regarding the effeces of chemo and the operation too. I also work as a pharmacy technician for NHS so now know every little piece of information I could find on his drugs and regime. Thankfully through my job I have access to information sources that not everyone does and that has helped agreat deal.

    Since this post my husband has stared his chemo and is doing really well other than being a bit tired and "rattling" as he calls it because of the steriods, but today was his last day of them so the effects should wear off soon.

    Strangely however he managing to eat solids, something he's not managed for about 6 weeks!! We're sure it's only a temporary thing due to the steroids and or antiemetics but we'll take it for now.

    Thank you for your reply.

    L x

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