myhusband has just been diagnosed with cancer of the oesophagus

Dear Donna

I am sorry to hear about this news.   The Oesophageal Patients Association has a website and a helpline 0121 704 9860.   There are many people I know who have had this diagnosis and now lead a good quality of life after cancer surgery and chemotherapy.   You are quite right that it is not just middle-aged men who have smoked or drunk heavily.   It sometimes depends on whether it is adenocarcionoma (70% of UK cases) or squamous cell carcinoma.   Adenocarcinoma is much more associated with prolonged acid reflux and a condition called Barrett's Oesophagus.

It all depends on what stage the tumour is as to where you go from here.   The doctors will do the scans and tests and discuss your husband's situation at a multi-disciplinary team meeting to work out the best way forward.   This takes a couple of weeks or so, and it is frustrating not knowing what might happen treatment-wise, but this method is best medically.    Meanwhile it is a traumatic shock and you have to get used to the idea yourselves.   I think it is very sensible to get your heads round what had happened first before  telling other people.  Use your instinct on who to tell.   You will find an enormous variation in how people react because it is a shock for them too.   If there is a Maggie's Centre or similar cancer support centre nearby (your hospital will tell you) I do recommend that you go along to talk things over because talking to trained people does help you to get things a bit straighter in your own minds.

Survival statistics are misleading when it comes down to an individual.   If oesophageal cancer is caught in its very early stages, the 5-year survival rate is up around 85%, comparable with breast cancer, but this tends to be when the patient cannot feel any difficulty with swallowing.   So I think there is nothing to do at this stage but wait for further news from the hospital, concentrate on your own welfare and morale, and try and make sure that you stick together in the battle ahead.   I do wish you both well.

Thank you so much Alan for taking the time to comment and for the information on OPA I will be taking a look at that.  Your information made me feel somewhat better.  They say this cancer is rare but I lost my father to this in 1989 and he was someone who never drank or smoked either.

My husband had  rotary cuff surgery in end of June so since last February we had been slowly losing weight but had been working on it and it was a gradual decrease but after surgery he started to notice the throat thing when he ate so we were thinking it was something to do with the surgery he had so at the appointment with the surgeon who did his surgery he said no that the swallow was unrelated so that's when we went to GP and started the process of where we are today.  Now I'm trying to fatten him up because we don't want this weight loss and I want him strong as possible for the road ahead.  It's hard for me to eat as well because I feel so bad for him trying to eat and he always enjoyed his food. 

Thank you again ALan for your reponse.

 

hello Donna, I am sorry to hear that your husband has also been diagnosed with osophageal cancer and i can sympathise With how you must be feeling while you wait for things to start happening.  my husbands cancer turned out to be a fairly rare combination, small cell and oesophageal is quite unusual and our 0ncologist has had only four cases in five years.  it was contained within the area so we were expecting surgery but the mdt team decided against this option because of the likelihood of spread.  so chemo followed by radiotherapy is his best hope and we are reassured by the advice that following this he should have a period of good health which could last many months although it seems likely it may return but not necessarily in the same place which sounds very uncertain.  he has just today had his second session of carboplatin and etoposide which he will have six in all followed by radiotherapy.  he did not suffer much in the way of side effects first time except for tiredness, sorted by an afternoon doze! alan is quite right in saying about being careful of who you tell.  we decided to be honest with family, friends and neighbours but one neighbour actually said "do you think you will get married again?" which was very upsetting as you can imagine as we are trying to keep positive and not thinking too far into the future.  another good piece of advice i received was that if you look things up on line stick to recognised sites like cancer research and macmillan.  i have stopped researching now because there is so little info on the type of cancer which my husband has

i am sorry my message got sent before i had finished it.  As i said i have stopped researching because there is not much about this particular cancer.  we are trying to keep as active as possible within his tiredness limits, but enjoying the recent lovely weather in norfolk with walks on the beach etc and odd jobs around the house and garden.  its important to keep life as normal as possible, although i admit i did see my gp for a bit of help to calm my panic attacks.  i do hope your husband will do well on any treatment decided for him and it wont be too long getting underway.  do stay in touch as we are both facing the same challenges.  how old are your kids?  ours are two daughters 43 and 36 and we have three grandsons 18, 16 and 12, eldest has just gone off to uni in surrey.  lots of positive thoughts heading your way.   LESLEY

I'm in Canads Leslie and my husband is 59 my oldest son is 41 and 38 and 33 and youngest is 30 this year and we have 5 Grandchildren.

Where is Norfolk?

we sound very similar.  my husbands only symptom was weight loss and i was the one unable to eat because of stress and began to lose weight myself which was ridiculous which iswhy i went to gp myself.  it is very scary especially in the night when you cant sleep.  from the day our practice nurse referred him first for chest xray and bloodtests to his first chemo session was five weeks which is very good but also made me panic because it was so quick if you know what i mean.  my husband derek has remained eating more or less normally and has taken a liking for triple chocolate mousse desserts, kentucky fried chicken and all te usual meals we have, only thing which he finds "sticky" are peas, sweetcorn and baked beans.  he is even eating curry.  all this is good.  i expect you will get an appointment with a dietician.  you have a time ahead of lods of appointments but take each day as it comes.  all the best to you and your husband.  lesley

Let's try to stay in touch Leslie we are in this battle together with our husbands to make each day the best we can.  By the end of next week I will know what we are up against so of course praying for the best.

Enjoy your lovely weather your having not sure where Norfolk is though.

Happy Thanksgiving !!☺️

Norfolk is a county in East Anglia (east England).   They have the advantage of an excellent hospital at Norwich with surgeons very experienced at dealing with this illness.

Do you know where I can find out the best place fir my husband in Canada ?

We would like to make sure we are getting the best care possible.

Not offhand but I can ask.   Where do you live in Canada?  I imagine that state boundaries can be important?

Hi Donna, as Alan has said Norfolk is on the east side of the uk, we live in an area known as the Norfolk broads, which are a series of lakes and rivers where a lot of sailing and wildlife goes on. We are between Norwich which us our county city and gt Yarmouth which is a seaside resort, our coastline is known fir uts long sandy beaches. We are indeed fortunate with our local hospital although my husbands cancer is not common so any hospital does not have a lot of experience. I am sure if you put something like cancer support groups in your search engine you will come up with something like our MacMillan or cancer research. We are lucky because we have the Big C centre which is a charity which offers support and has its own building in the hospital complex. My husband chemo yesterday, it seems to be the steroids which cause him a problem because they keep him awake, but they are just for three days. Otherwise a bit queasy but has pills for that too. I will stay in touch of course and hope you will soon be hearing results and treatment plans etc for this horrible disease. Regards, lesley

Ontario 

Well Norfolk sounds like a beautiful place.  I live in Ontario Canada so not close to any oceans and coastal views.  However we do have cancer centres here and the private clinic where he had his endoscopy done have arranged the ct scan and talk with a surgeon next week when I'm sure we will find out a lot more of the type and if it has spread to other places.

i have just been researching to see the best facility for him to go if surgery is

a option I'm trying to be pro active.  If there is a hospital 6 hours away with a

surgeon better with what he has we would do the travel.

All the best to you Leslie and your husband I hope he is feeling well enough

soon to go out for a walk this weekend in what's sounds like a gorgeous coastal seaside.  Take care  

 

I found at the beginning that I had found out lots of info and statistics but Derek didn't want to know so I just worried away alone. Then one day he looked it up himself and from then on we were able to discuss things openly and it did help. I will be thinking of you both, especially when you have to tell your boys, but you need to support each other because whatever happens next wont be easy. Stay strong. Lesley

I have contacted a surgeon over here who did not have detailed knowledge about Canada, but he thought that going to a cancer centre in Toronto would be fine.

Thanks for your efforts Alan 

Hi donna, how are things going with you both. I am thinking of you. My husband is ok, bit tired and gets out of breath but this is because his red blood cells are low this,point in the cycle so oxygen doesn't pump around so well. The worst part is not knowing whether things are improving inside. Usually if you are ill you take your meds and start to feel better. We have to wait for scans. So hard to be positive all the time and sometimes the panic takes hold and then I go out for a walk and calm down. Hope you are keeping strong. Lesley

Hi Leslie.  I've been thinking of you as well.  Rick had his ct scan on Tuesday and yesterday we had surgeon appointment.  We have found out so far he has Adenocarcinoma which is the must common cancer of the esopugus however symptoms don't usually start happening till the cancer is further advanced and tumor grew big enough in the bottom of his esopugus to start the swallowing issue.  He never did have the heartburn problem they said in his case in could have been silent reflex.  The ct scan did show some enlarged Lympe nodes further into his abdomen and some spots in the lungs they have to look into further they said when you have cancer it's not unusual for them to flare up when you have cancer  He is being sheduled for a PET SCAN which will confirm if it's cancer  in those nodes and that's what we are praying for that's it's not because they likely will not operate and could be incurable 😥

So we are hoping for the best.  The kids all know now they all came over lastnight for the exciting baseball game to watch with their Dad so it's nice but it's so heart wrenching for me to look at him.  I have to go out for some cries and it helps make me feel better.  I'm over the initial shock now and I'm able to eat a little more.  I have been making him smoothies and ensure drinks the problem is keeping his nutrition up so he doesn't lose anymore weight which is hard because of the swallowing but he can drink fluids.

take care Leslie stay strong I'll,stay in touch.  I'm wishing and praying for your husband too 🙏

Hello donna from a very wet and windy Norfolk. Its such a hard time between diagnosis and the start of treatment. Its the worst time. I found that once Derek started treatment there was a certain feeling of relief that it was being dealt with. Stay strong. Lesley

hello Donna, been thinking of you and Rick this past week and wondering how things are going for him and you too of course.  Wednesday sees Derek having his third session of chemo, then he will be scheduled for a scan when we hope to find the horrible think has shrunk.  not too many side effects from the last session, and he has kept busy with little jobs around the house and garden, but gets very tired and has to rest .  In the meantime i managed to have lunch with a friend and go to the movies with another friend to see the movie Suffragette. Derek stays away from public places due to the risk of infection so i feel a bit mean going out but he insists that i need to get out and keep my life as normal as possible.  i hope you are able to get some relaxation yourself.  do let me know how things are.  lesley