Hi Tonid

I'm sorry to hear that your appointment with the nurse consultant didn't go well. It's understandable that you're feeling frustrated.

Did they say if they had spoken to your husband's cardiac consultant about his current level of health? Although they have said he's not a suitbale candidate for surgery or chemotherapy, have they mentioned if it would be possible to give radiotherapy?  

We've some information on our website about oesophageal cancer  which may be of help but you might also find it useful to chat with one of our team of nurses. They are available Monday to Friday 9am to 5pm on 0808 800 4040. 

Best wishes, 
Jenn
Cancer Chat moderator

Hi Jan 

Thank you for replying. 

I had a call today from our link nurse with regards to an email I sent her about our appointment with the nurse consultant.  She said that they will only talk to my husband's cardiac consultant if they decide the tumour is suitable for surgery.  I can kinda understand this, but I would really like the cardiac chap to be at the MDT on Monday so he has input and they are just no seeing hubby as a heart failure person. 

The link nurse said that the Nurse Consultant was possibly giving us a warning that the surgery would not go ahead.  That is fine but don't blame it on the heart failure and what appears to be her percieved idea of what a heart failure person should be capable off which is not a lot.  She did not listen to what he can do.  She asked about our family and if they lived close by.  Giving the impression we would need them soon.

She said that radiotherapy would not be suitable if the cancer has spread to his lymph nodes, which is what it looks like from the CT scan.  He had a FDG PET scan today which will be ready for Monday. 

My husband  was very positive, is completely devastated by our meeting with the Nurse Consultant, as am I.  She really did not handle it well at all.  When she said about radiotherapy not working for him, I said will it just be palliative care, she said yes.  I became a little tearful and she and the student said, right we will leave you alone and scuttled out of the room.

Sorry if I sound a tad bitter and angry. 

Hi Tonid,

So sorry to read about the situation you find yourselves in. I can only comment from the perspective of a fellow Oesophageal Cancer patient.

Ignoring the complication of the cardiac history, has anyone told you yet the cancer's stage and grade? This is important as it will give a rough indication of the treatments likely to be offered and how aggressive the cancer is likely to be. 

It is also important to know exactly where the cancer is located, in which direction it has grown and whether there are any complications. In my case it was at the bottom of my oesophagus, had grown outwards and was wrapped around my aorta which ruled out either surgery or radiotherapy due to the risk of weakening or rupturing the aorta. 

Please try not to panic if palliative treatment is the only treatment on offer - not easy I know. This just means that a cure isn't possible but that everything will be done to alleviate the cancer symptoms and extend your husband's life as much as possible. I underwent palliative chemo in 2013. 

Take nothing for granted and if you feel you're being fobbed off with excuses challenge them. Frankly a nurse consultant isn't qualified to second guess the results of the MDT. In your position, I'd be contacting the cardiologist and asking him to become directly involved in his patient's after care via Monday's MDT. Regardless of whether surgery is an option, chemo cannot be reasonably ruled out without his input.

The nurse consultant was probably trying to set your expectations at a reasonable level, but only your husband's cardiologist and oncologist together would be able to advise whether the risks of chemo were likely to outweigh the potential benefits (or not) in your husband's case. 

Every case is as different as every patient and every cancer. Our personal physical health affects how much chemo our bodies can recover from. Until all these factors are considered, it would be hard for anyone to predict the best way forward.

Good luck with Minday's MDT meeting.

Dave

HI Dave

Thank you so much for replying to me.  I have not replied before because we tried to have a weekend off of Planet Cancer.  We managed a couple of hours on Saturday, but not for the rest of the time. 

My husband does not have a cardiologist, there has not been any need as he has been doing so well and was signed off the heart failure nurses over 18 months ago. He had a quad bypass 2 weeks before the heart failure which was not in our local hospital.  I know is notes will be available to our local cardiologist and will ask for his input.  The nurse consultant only said that the caridiologist will be called in if they operate.  What about chemo........... that has a risk for heart failure.  I just don't understand why they are so reluctant to involve him. 

Your answer, especially about palliative care gave me a glimmer of hope in what has been a very bleak 3 weeks.  My husband is getting more tired and has aches and pains everywhere, which might just be psychosematic (hope that is the correct spelling). He has totally withdrawn from me, which is so hard as we are a couple that used to talk about everything and anything and laughed so much.  I know it is probably his way of dealing with his demons.  It is so bloody hard.  At least when he had his by-pass (after 5 heart attacks in a week!)  I never doubted for one moment he would get better.  Not now, all I can see is his death. 

What we do know about the tumour is that it is 6 cm long and is at the junction with his stomach.  Obviously, we will know more tomorrow, but to be honest I just want the world to stop. 

Can you tell me how eating is for you?  Only if you want to.

Thank you again for getting back to me x 

Hi,

Eating is fine at the moment. My severe acid reflux is controlled with Omeprazole. I've been lucky enough in a way that my cancer unusually grew outward from my oesophagus and didn't affect my swallowing. On the other hand, my lack of symptoms delayed my diagnosis.

I can understand you needing a weekend off Planet Cancer - we all need that. 

I hope everything went OK and you got the answers you needed.

Best wishes

Dave

Gary is already on those!!  We had a phone call today about the MDT this afternoon which looked at his PET scan.  They are putting him forward for surgery and the cancer has not spread.  After our previous conversations we were prepared for the worst so the fact that Gary might have a  life threatening operation was something to celebrate......... how perverse.  Also as it has not spread, if the op is not on the cards, radiotherapy might be.  So things are not so bleak as the last couple of weeks. 

Another bonus is Gary is nearly back to himself and we are talking normally including our thoughts on cancer.  He admitted to being the most scared he has ever been and this is from a guy who was shot at whilst in Africa because rebels wanted his landrover!

Keep well x 

Hi Toni,

That’s great news - however perverse that sounds!

I know from experience what he means about cancer being far scarier than being in a war zone! There’s a weird but wonderful exhilaration and adrenaline rush associated with surviving a short-lived threat that you don’t get with the slow burn of cancer fear and the feeling that you have little control over what happens next :-) 

Good luck with the treatment!

Dave