Hi Keep Smiling

My partner was diagnosed with OC a year ago, after attending his GP for 4 or 5 months with difficulty swallowing.  It took them all this time to refer him to a specialist, and like you I think that during this time the tumour was getting bigger and bigger.  Kenny's tumour is inoperable and so he has had a lot of treatment to prevent the spread. This seems to be working so far. 

Kenny always suffered with pains in his back and shoulders, right from the start, and I also worried that it had spread to his lungs, back etc.  However, scans have shown this not be the case.  I think that the pain in his back comes from the tumour in the gullet and also reflux which he suffers with quite a lot.

Kenny's tumour is also in his lower gullet, close to his stomach. However, a year on and he is back at work full time, manages to live a close to normal life and the only problem is eating the foods which he used to be able to.  I don't know how long he will continue like this, but I live for today.  Yes I worry that it will get worse, but I will try to deal with that when it happens.  I sound very strong today, it's not always like that.  I have very very dark days when the worry, the anger and the frustration take over.  But this site helps me so much.  There are so many people here with success stories and words of encouragement and lots more knowledge than I have.  Keep strong and most importantly KEEP SMILING!!!

Sheena xx

Hello Keepsmiling

Whilst the delay in diagnosis was understandably annoying and could have been avoided by having an endoscopy in the first place, especially as one of your brother’s symptoms is dysphagia (difficulty swallowing), the one month’s delay wouldn’t have made a great deal of difference in terms of it spreading.

The pain in the back and shoulder is deferred pain and is quite common with this type of cancer.  I had this kind of pain really badly and I know it can be very scary as you automatically think that the cancer has spread.  In fact, I was told that it’s the vagus nerve which causes this pain.

Your brother will now have a series of tests such as a CT scan, a PET scan, maybe a laparoscopy and an ultrasound endoscopy and once these are assessed by the multidisciplinary team (MDT), they will be able to stage the cancer and devise the appropriate treatment plan, which will include chemotherapy and possibly surgery. 

If you click on our photos you can read our profiles and you will get some idea of what happens.  My tumour was 7cm, just a bit bigger than your brothers and for around four months I could barely swallow at all.

The main thing for your brother is to stay very focussed upon treatment, take it one day at a time and remain positive, whilst surrounding himself with caring and encouraging people, as that really helps to maintain a positive attitude.

You’ll find that much of the time is spent waiting for tests, then waiting for results, which is always a difficult and worrying time, but once treatment starts you tend to adapt to the new routine.

I wish you and your brother loads of good luck and keep in touch and let us know how you get on.

Love Crystal xx

Hello Bacardiwoman

I was so very sorry to read about the recurrence and I can imagine how absolutely devastating and shattered you both were to get this news.  Try to take heart that there are treatments that are very effective and can control this cancer for some considerable time, as no doubt you’ve read, so it’s my hope that your husband will get onto a trial or pursue another form of treatment such as PDT.  Nothing is set in stone with this cancer and so many people do very well regardless of prognoses.  It would certainly be worth researching and asking other doctors for potential future treatments.  Have a lovely holiday together and keep in touch.  I’m sending send you big hugs and will be thinking of you.

Love

Crystal xx

(((Hi Maisiebird)))

How are you?   I’m not too bad thanks – still have reflux occasionally, still having to sleep in a semi-upright position and yes, scars are still sore from time to time, especially when I’m tired.  They seem to tingle, pull and stretch and are very sensitive to extremes of temperature.  So, as this is four years post surgery, maybe I’ve answered your questions concerning your hubby Lol.  Really though, I hope all is well and that all goes well at his follow-up appointment.  The ‘tall thin one’ doesn’t offer scans, although he would if there was any concern or specific symptoms, otherwise he just does a physical examination and sends you for blood tests.  In the meantime, have a lovely cruise and come back and tell us about it.

Lots of Love

Crystal xx

Hi John

It’s good to hear that you’re doing very well two years post surgery, albeit with the various aches and pains that we have to contend with.  The thing with any surgery on the digestive tract is that it’s extremely disruptive and can cause problems for a long time.  That’s not to say that these problems won’t eventually stop, but it does take a lot longer to heal than if it were anywhere else. 

I tend to agree with you regarding scans and would only request one if I thought it was absolutely necessary.  My own consultant didn’t think they were useful unless he thought something needed looking at, so providing symptoms are within the norm, I personally am happy not to have a scan.  Sometimes, it’s difficult to know what is within the norm since there are multiple side effects, but I think that if you describe symptoms exactly, the consultant is certainly experienced enough to know when further tests are called for.

By the way, I used to live in Lincolnshire for many years.  Did you have your surgery in Lincoln?  Happy days, but they are now too Lol.

Love to you and Candy

Crystal xx

Hi Sheena

It was so heartening to read your post and to see that Kenny is back at work and leading a near to normal life style.  You have the right attitude by living for the day, and that is something I’ve become very good at too, so each day is a full and rewarding experience – that is, when it’s not full of sloth and gluttony Lol. 

I hope Kenny does well for a very long time and it seems that the chemo certainly brought it under control.

Love and Light to you.

Crystal xx

Love to all looking in.  You’re always in my thoughts and I haven’t forgotten any of you, even if you might think I have.  xx

thanks guys, appreciate you taking the time to reply..

your right i need to stay focused and keep my brother strong. 

great to hear that kenny is doing well sheenakay, im sure i will find the strength to cope just like you have... i will pray he stays fit and healthy..

also thanks crystal clear, very wise words from reading these posts i feel alot better and see light at the end of the tunnel... i also wish you good luck im sure your gunna be just fine xx

keep in touch guys and let me also know how your going on...

P.S 

KEEPSMILING LOL

XXXXXXXXXXXXX

Hi Sheena

Ref your comment regarding your partner not being able to eat the foods which he used to be able; can I ask if this is has always been an issue or if it has got worse post treatment?

My reason for asking is that my husband was diagnosed in Feb this year with inoperable stage 4 OC and is now in the middle of his 6th cycle of chemo and is shortly going to start a 35 day course of radiation treatment.  He's also been getting infusions of Herceptin (with chemo's 5&6) and this will also continue for a further 2 sessions.  When he is not feeling nauseous from the chemo he is eating pretty well with no swallowing problems but I'm concerned if he might get more problems with eating and swallowing with the radiation treatment and it would be good to know what to expect.

Hoping you might have some answers for me.

All the best 

Mandy

Hi Mandy

Kenny's first symptom was not being able to swallow - particularly bread/rice/meat/chicken/oranges - actually quite a long list.  When he had an endoscopy and ultrasound scan in the gullet, they were amazed that he was even able to drink as the tumour was so bulky that the gap was like a pin hole.  Immediately he was admitted to hospital and had a stent put in.  This certainly helped and we built up his weight and strength prior to the chemo and RT.  He had 25 sessions of RT.  For a while his appetite was very poor after the RT finished.  His taste buds had changed and he really didn't eat much at all - however, we were told by many that this was to be expected.  He did have a bit of pain after the RT and again we were told that this was expected, where the radiation had caused inflamation around the tumour.  This has improved.  Recent swallowing problems have reoccured again - and recent endoscopy has shown inflammation possibly due to reflux.  Kenny's tumour is at the lower end of his oesoephogus close to his stomach. 

We found (or at least Kenny found) the RT treatment to be a "walk in the park", but it really hit him after it finished.  Apparently the effects build up and are worst at the end.  Crystal explained this really clearly to me.  For 6 weeks Kenny was totally washed out.  Very very tired and with hardly any energy.  That seems a long time ago now and as long as they can keep this from spreading, I am hopeful that the treatment has achieved what was intended.  At least the oncologist was very positive about the results. We have a further check up this month when the oncologist will decide the next steps. 

Good luck to you and particularly to your husband.  We all know on this site what you are going through.  Keep in touch and let us know how things go.

Love

Sheena xxxxxxxx

Thank you Crystal.  What a lovely, caring and considerate person you are.

Love

Sheena xxxxx