Tumour found - stories of hope please

Hi mate I was diagnosed at 39 had op on 40th I've got 2 kids I'm 44 now see what result you get and we can take it from there welcome to the site and good luck Jimmy  

Thanks for the response and the welcome mate. Did you have any symptoms when you were diagnosed. 

I have sarcoidosis (1 in 100000 chance of that, plus this!?!) so had full body ct scan 15 months ago (followed by lung biopsy)  and regular check ups, bloods etc. Had a chest xray 8 weeks ago with no abnormalities (aside from my sarcoid) and my stomach seemed clear during the scope. Liver function tests are all fine and unchanged from 8 weeks ago so crossing my fingers and hoping for no spread. Obviously steeling myself for the worst, but it's nice to have some bits of the boat to cling on to if you know what I mean. 

Hi. My partner Colin was diagnosed just about 12 months ago - the day after his 65th birthday! He had had no symptoms and had gone to see the doctor about something else. She was right on the ball and picked up on something he said about feeling sometimes as though food was just sitting before entering the stomach. He has gone through chemo/major surgery/chemo and life has sometimes been very tough.

That said he has carried on virtually as normal, and they have managed to get all,of the tumour amd is now on the road to recovery.

it sounds as though hopefully you have been caught early which is good. But you will have to wait for the results of quite a few different types of tests before you will know for sure - and the waiting is extremely hard! Worse I think than knowing your fate as at least you can then move on.

We cannot praise the NHS enough, but never be afraid of asking them to explain again and again if there is anything you are not sure of. And don't be frightened to ask for a second opinion on anything either. Also, there is loads of support on this site so again something to,lean on.

Good luck.

Thank you that is very encouraging 

Hi  it's hard waiting. Until you get your final staging. Don't get down.because there is loads of success story's out there.I'm one of them.it's took a long road but you get there.  I'm 7 months post opp.and doing fine. All the best xxx

I saw your post and had to reply, my dad was diagnosed on the 3rd Oct 2014 (strangely a date I remember!). He had all the tests, CT scan, PET scan, laproscopy and ultrasound endoscopy and was told he was operable.

Two years on he is doing well. His check ups are every 6 months and he eats normally. Infact you would not know that he has been ill apart from the fact he has to sleep after eating. My friend even told me that he looks younger now that he did before he fell ill.

As a family we found the tests the worst part, once you have a treatment plan in place everything becomes much easier to deal with. Dad remained positive the whole way through and this is something that the nurses and doctors commented on. He just saw all the treatment as something he had to get through.

This support group is amazing and helped me in some really tough times, there are some fantastic people on here. The best part is that everyone gets 'it'.

Take care and please let us know how your tests go.

Hannah xx

I was told yesterday that I have a squamous cell carcinoma at the junction of my stomach and oesophagus. Apparently this is unusual as they are usually adenocarcinoma in that area. Had PET scan this morning and seeing oncologist on Monday. The main worry at present seems to be that the tumour is very close to the aorta. I am 70 years old and last year had a completely unrelated anal cancer( which again unusually was adenocarcinoma, whereas they are usually squamous!!) trust me to be unusual!  As a result of that I had major surgery and now have a permanent colostomy. I understand that that squamous cells are more likely to respond to radiation. Provided the aorta is not involved I will be given the option of the Ivor Lewis procedure or chemo radiation, which apparently is the treatment of choice in the USA. Apparently results are comparable. Does any one have any experience of this and done well? 

YHi Greame

The waiting is horrendous, I know, but your MDT team need all the relevant information from endoscopy, laparoscopy,  CTscans,  PETscans, fitness tests etc to work out the best plan of action for you. 

My husband, like Wendy's, was diagnosed just about 12 months ago at the age of 72, after having all of the above tests and, unbelievably, is cancer free now.   

He endured, being fed by a stomach tube for 4 months as he was unable to swallow before he started treatment.   His cancer was same as you, on the juncture of the stomach, after 3 cycles of pre op chemo, then a rest for 6 weeks, he was operated on at the end of January this year.  The histology report showed that the whole of the tumour was removed, and all 18 lymph nodes removed, were clear.   He then had a further 3 cycles of 'mop up' chemo, which finished at the end of May/beg of June.    

It wasnt an easy ride, there Were many ups and down, but staying positive and taking each day at a time, having faith in the hospital team and the love of his family and friends, he is through it, cancer free and doing fantastic now.   He's lost 4 stone in weight overall, but it's coming back now, 1st 12lbs gained,  but he actually doesn't want to go back to the size he was.   We are all very proud of him.

Check out this site, there are many, many success stories, lots of helpful people willing to offer advice and support.   You are young and have a young family and a lot to fight for, don't let this beast get the better of you.

Sending mahoosive hugs and if you need any advice, just ask. 

Keep us posted on here and good luck. 

Ann 

Hi Graeme,

The following is what I posted last week so there is definitely good news in that respect!!!

Wednesday 12th October:

Strange feeling today; exactly 12 months ago today we got the life changing news that my husband Robbie had the demon that is Oesophageal Cancer. We were in shock as apart from swallowing problems there were no other obvious symptoms. Life became a whirlwind of tests, ct scans, pet scans, gastroscopies etc to ascertain the stage of the cancer and we were told that had it been left much later it would have been a whole different scenario (I'll leave you to guess that one). From day 1 we ...agreed to stay positive and just take each day as it came (yes there were dark moments but they did not last long). Chemo came and went (which he sailed through) then the day of surgery - March 22nd - which started a long (5 weeks) spell in ICU, then a further 2 or so weeks in the surgical ward and during this time we nearly lost this amazing man 3 times but he fought back - big time!!........my days were spent back and forth to Leicester (80 mile round trip and mostly alone) and how I got through those days I don't know - at times I felt so alone!! He came home from hospital on 13th May and thus began the recovery at home. He has gone from strength to strength and I am so proud of him, we got the all clear cancer wise on 8th June and he didn't need follow up chemo which was a bonus and we had to keep pinching ourselves to believe it!!.......he still has a long way to go as he has had swallowing issues that resulted in 2 stretches of his oesophagus and won't get a total all clear for 5 years - only then will we cheer from the rooftops!!! Robbie returned to work Monday this week on phased return and it has given him even more determination to continue to get fitter.
No one in our social circle will ever truly know or imagine what we have been through as each case is different and we wouldn't wish it on anyone and just because Robbie looks well and is back to normal in respect of day to day life we have to remind people that the journey is still far from finished, along with some minor issues that still cause occasional problems. We are now on our 4th 'new normal' !!!
Thank you to all of you who have been there for us along the way, we cannot begin to thank you for your love and support. Onwards and upwards!!!

Hi Graeme

There are loads of survivors out there. I was where you are 3 years ago. I thought that life was coming to an end. But since my op in Feb 2014 I have travelled the world and I enjoy life more now than ever before.

Of course I was retired so thete was no pressure to work during chemo (which wasn't too bad).

The op sounds drastic but they have been doing it for 50 years and are getting pretty good at it. You are young so hopefully if surgery is necessary you'll be able to deal with it with few problems.

The coming weeks will probably involve appointments scans and tests followed, I expect, by a mdt meeting where they decide on a treatment path for your case.

If you haven't already spoken with a specialist nurse you will soon;  they will be your new best friend and advisor.

Don't give up hope. Don't google. Be patient, find stuff to do while you wait for all the scans to be complete.

Best Regards