Oesophageal Patients Association
3,626 members2,195 posts

Update to 'Is this bad?...

The quick answer is 'no - it wasn't bad'!

My specialist nurse contacted me this afternoon to tell me the results of the MDT meeting this morning. All is going to plan. The 'T3 locally advanced' diagnosis from the EUS was only what they were expecting - so it was not an unpleasant surprise.

Although she did not specifically refer to the PET scan results - there was no mention of metastases, so I am presuming things are still localised. That's a relief.

The team have decided, however, that they would like a diagnostic laparoscopy doing - and she is hoping to get me in for that on Saturday. She is going to let me know about that tomorrow. I think they want a bit more information about possible lymph node involvement.

Just goes to show that I shouldn't get worked up about things before I have the full picture!

Thanks to everyone who did their best to reassure me however. It was very much appreciated.

Kwev

22 Replies
oldestnewest

Great news Kev. As my granny used to say, "May your troubles always be smaller than your imagination!"

I personally only ever needed to know I had a fighting chance. They offered me one and I went for it. I have the up most respect for everyone on here because they are survivors and have the T shirt, some have written books.

No one can give you a diagnosis but we can give you a shoulder and information to help you get your life back on track.

All the best

Mark

Reply

Well said Mark

You are a pritty special guy yourself and an inspiration to others who need a helping hand.

Steve

Reply

Wonderful news Kev. Keep positive. Very best wishes.

Reply

Thanks to all of you, again, for your help and support.

Kev

Reply

That's fantastic news Kev.

All the very best to you

Maria

Reply

Thanks Maria.

I received a telephone call at 9am this morning to say that I'm booked in for pre-op tomorrow at 9.30 am and then will have my diagnostic laparoscopy on Saturday morning. Hopefully this will be the last of the staging tests and we can then move on to chemo. My specialist nurse phoned me to say that she will asssume that the results of the laparoscopy will be positive - and will get me booked in for chemo asap.

I really cannot fault the NHS with regards to the speed I have been dealt with. Everyone I have had dealings with has been superb.

Kev

Reply

Good news. Please feel free to read through my blog on Caringbridge. My experience so far has been similar to yours. I too had the the Laparoscopic investigation before starting Chemo. Click on my username to go to my profile for the link.

Reply

Thanks Fred - I will do that.

Kev

Reply

Fab news!! Good Luck!! Keep strong and positive!!

Reply

Had my diagnostic laparoscopy on Saturday. Was discharged on Sunday lunchtime with a discharge note stating that no metasteses were present although one node in the left lesser sac was noted... I am taking that as pretty good news. Woke up at 1am on Monday morning in serious pain which didn't alleviate after a couple of paracetamol and by 2am I was almost climbing the wall in agony. My wife phoned for an ambulance and a paramedic arrived within a matter of minutes - impressive speed. I was rushed back into Warrington General, (where I had had had the laparoscopy) and pumped full of morphine en route. Bliss! Turned out that the fact that I have not been eating well lately, and had fasted for 21 hours prior to the laparoscopy, and the effects of the anaesthetic, had combined to give me serious constipation! I was seized up solid and that was also preventing me from passing water which was also causing pain. I was put back on to a surgical ward and first thing in the morning was given an enema. Nothing like having a horse syringe stuffed up your backside by a young nurse... Going in today to see my consultant for him to brief me on the findings. Keeping my fingers crossed - but it looks as though I should be eligible for surgery.

Kev

Reply

Good stuff. With you on the constipation, I was doubled up for days after my Gastrectomy. Did they prescribe Codeine as pain relief? Lots of these type pain killers cause terrible constipation. i won't touch Codeine as it causes havoc in the asteroid belt (if you get my drift!)

Reply

My hopes are dashed I'm afraid. Had a meeting with my consultant this afternoon to discuss all the staging results. Worst possible news. There is a lymph node high up in my neck that is affected and, although it would be technically feasible to remove it, the operation would be high risk and could kill me. Also there is a greater than even chance that it would make my situation worse. So - no surgery and no possibility of a cure - just palliative chemo. I'm seeing the chemo oncologist tomorrow and will ask him for a prognosis - but I'm just shell-shocked at the moment. I wasn't expecting this at all. The affected gland was picked up on the PET scan, which was the second staging test I had. I'm a bit baffled as to why they put me through an ultrasound endoscopy and a laparoscopy, if there was no hope of surgery... The fact that I continued to have staging tests after the PET scan, lead me to believe that the results from that had been positive.

Kev

Reply

Don't get too downhearted at this. Chemo is designed to treat these sort of things. It is like saying rain is bad weather to a Scotsman. There will be a route through this, it just may not be the one you or your team first thought of. Best wishes for the next steps. Nothing is clear cut, & decisions will change along the way as more information comes to light.

Reply

Thanks for that Fred. I hope you are right. Up to this point we had been banking on surgery. Although we knew that surgery was no guarantee of a cure, it did offer hope. When that hope is taken away, it's very hard to come to terms with.

We have a good life. We are still blissfully happily married after 42 years, we are not rich, but we are comfortably off, and have been enjoying life to the full. I don't want to die...

Kev

Reply

Nobody does. I keep getting told by peole that I am brave. I don't know how to respond. T'other Steve (Demon) summed it up nicely in his book (a very good read) saying something on the lines that only others can actually see bravery. There is support out there. I have certainly found the discussion boards on here, Macmillan & some of the American sites of great benefit, as well as writing a diary in the form of my blog. You are already on the road to treatment. It is very hard, but we must all try to be positive. Neither of us are dead yet!

Reply

You're right. I must remain positive and fight. Saw the oncologist today to discuss my chemo. He's having my original biopsies checked to see if my tumours have the Herceptin receptors (only a 10% chance - but worth a try), if not, then I'll start 'standard' chemo on 15th December. I did ask him for a prognosis but, of course, he stated that everyone is an individual, everyone starts chemo from a different point, everyone reacts differently to chemo, and although he could give me the 'average' - that average included people who were in a far worse state than I am. His average was 10 months...

Kev

Reply

I go to a cancer group once a month. Tonight I was talking to a man with Colon cancer given four months to live. Seven years ago.

Reply

That's just the sort of thing I need to hear Fred! Thank you.

Reply

Hi Kev,

my daughters neighbour underwent a similar situation to yourself, started chemo in 2009. He was not a candidate for surgery. I had surgery in June 2010. Its nearly 2012 and we are both still in pretty good shape with a good quality of life although both walking down a different path. I have my fingers crossed in between typing by the way! Ron has just finished laying paving slabs for his new patio! I couldn't believe it.

My husband had colon cancer and surgery in 1999. He died in 2008 after travelling abroad many times, moving house, seeing the arrival of several more grandchildren, celebrating serveral 18th birthdays for grandkids and had a good quality of life for most of that time.He was 72.

Chemo has come on so far in the last 10 years. Each year brings new drugs into this area. Hang on in there. I know how hard it must be for you and your family so I really do send you all my best wishes.

Charlie x

Reply

Thanks so much for your thoughts Charlie. My wife and I are in a very dark place at the moment and are struggling to remain positive. Stories such as this do help.

Reply

Can I join the club? After a meeting with my Consultant, it has been confirmed that my cancer has spread to my spine, left shoulder & Liver. Now classed as stage 4. Not a lot of consolation, but meeting the Oncologist soon to discuss options. What is the word for sharing feelings? Empathy, that is what I have. Keep positive, what else is to be done?

Reply

Hi Fred. I've been following your blog on Caringbridge and was devastated to hear your your news. You must have had so much hope when you had the operation - and to have them dashed in such a way, after having gone through all the discomfort of the operation, is just too cruel for words. My thoughts and wishes are with you. Kev.

Reply

You may also like...