Advice please

 I'm so sorry about what your dad is going through. Has he had a stent fitted or is he willing to? It could make a world of difference with how he eats. My husband (who is battling stage 4 adenocarcinoma) is eating just about everything since getting a stent placed over a month ago. He has even gained a few pounds. Your dad might also benefit from FOLFOX chemo. It has much milder side effects for most people and could actually improve his quality and longevity of life. 

You don’t say how old your dad is? So sad that he doesn’t want treatment. I’m 54 and was diagnosed with the same at the OJ in my Esophagus towards my stomach in January. Mine was 3cms. After chemotherapy (FLOT), 4 rounds it had shrunk and they could hardly see it. I had my op in June and all the 30 lymph nodes were clear but I’m having another round of chemo on Monday just to be on safe side (4 lots again). 

Does he like soup and soft ice cream? I had difficulty swallowing before my first lot of chemotherapy (not to your dads extent by the sound of it), but a week or so after first chemo session the swallowing issues had gone!  

The support groups are worth going to also, - people in my situation 5-7 years down the line and still cancer free!  I hope your dad reconsiders as it’s always worth a shot.  Have they said how big his tumour is? 

Hi thanks for your reply. Since last week my dad has got even worse with eating and I’m hoping he will consider a stent. Was it a fairly simple procedure? I’m glad your husband is doing well with it.

Hi they said it was 3.5 cm poorly differentiated. He is 74 and worried that the treatment would make him so Sick he’d feel worse. They said chemo would only have a ten percent chance of stopping it spreading. He eats soup but will take about 40 minutes and it’s getting harder to eat anything much else. I’m so glad that you are doing so well. 

I'm so sorry that your dad has gotten worse with eating. My husband was too until he got the stent. He was in and out of the hospital within about 3 hours when he had the procedure. It is done under general anesthesia and takes approximately 45 minutes. The surgeon placed a self-expanding mesh tube metal stent in my husband's esophagus, about the size of a small pickle. His throat hurt quite a bit that night and he had acid reflux for a couple of weeks that he had never had before.

But after a few days on a soft diet, he was back to eating everything, even steak and thick bread. Acid reflux is gone with Pantaprozole once a day and Famotidine once a day. He just needs to chew everything thoroughly and it goes down smoothly. He no longer regurgitates his food, and he is still gaining weight, even on chemo. But he is 55, so I understand it could be different for your dad at 74. I fully understand and respect your dad's preference not to go through chemo, but maybe he could just try a few treatments and see how it goes. It hasn't made my husband feel too much worse other than tired during the treatment and a bit nauseous but not vomiting. 

Hi there. I'm sorry to hear your Dad is having to go through this awful experience. I don't blame him for not wanting to go for treatment when there are no guarantees that it will work. However, my husband (64) found that once he started his chemo (Capox), the swallowing issues improved almost straight away. Also, if surgery has been offered, then there is a chance it could be curative. That isn't the case for my husband. So, in my experience, it would be worth him reviewing his decision, because not everyone has that choice to make. And the symptoms of OC, without any treatment at all, are very unforgiving. So he may as well take his chances, I think.

I hope you can persuade him to change his mind.

M

Thank you so much for your help. He’s scared of course. I’m hoping that hearing from real people with the same awful experience will help him more than just  speaking to a doctor. They did say while surgery was possible he would need intensive chemo first. The outcome didn’t seem too promising. This was all a couple of months ago and he now struggles to eat even soup. I’m hoping these messages persuade him to try something. Hope your husband and yourself keep being strong.

Thank you. I’m sorry to hear that they’ve said only 10 percent chance of it not spreading, it makes sense now why he’s reluctant to have any treatment, - they sound sure it’s likely to spread then? Mine was localised luckily so was in the one hard to reach place but was 3cm and poorly differentiated. Weird thing I still can’t get my head round though is I’m not offered any more scans after this post op chemo as they wouldn’t be able to see if a difference has been made. They were pretty happy after the op though so I suppose I need to take reassurance from that.  I hope your dad takes something that could relieve his swallowing difficulties even if it’s not the chemo 

Hi. I'm having chemo before surgery & after only 1 session 2 weeks ago my swallowing has improved quite a bit. Didnt have too many side effects either. I suggest your dad try chemo to see how he gets on. He may be able to have surgery if it shrinks tumour enough. Chemo is definitely worth a try. Julia

I just had to get in contact with you.  My Dad is also battling this awful disease.  He wont find out what stage his cancer is at but has started chemo.  He had a stent fitted a few weeks ago and that does allow him to eat more but he's constantly feeling full which I am trying to get some advice on.   Some of the things my dad has liked eating are:

icecream, jelly, soup (I make in a soup maker so put hidden veg in and double cream, or cream cheese to increase calories, pasta (but only since having the stent), fish (always check for bones), smoothies, it does still rely on conplan a lot.

I'm sorry its not much help, I just wanted you to know that I feel for you and its totally heart breaking watching your loved one and feeling so helpless.

Sending you hope and strength