Hi Ashley-Dye, 

I am so sorry to hear about what happened to your wife, that she has been diagnosed with stage 4 stomach cancer and  ended up in hospital 3 weeks ago as an emergency case. It must have been so distressing for you to see her unable to eat for over a month and now that she has had her feeding tube removed, you must be feeling nervous about her having to learn to eat again. We have information on our website on stomach stents which you might find useful. Perhaps you could talk to her medical team and ask for any tips or advice they could give you to help her make the transition to starting eating again smoother and don't hesitate to ask them any questions. 

Our nurses are also available on this free number 0808 800 4040 if you would like to talk things through with them and I am sure they will have some good tips for you or they will also be happy to point you in the right direction - their helpline is open Monday to Friday from 9am to 5pm. 

Other members of our community may have been in a position similar to yours before looking after a loved one with stage 4 stomach cancer and I hope that they will be happy to come and share their experiences with you. 

Best wishes, 

Lucie, Cancer Chat Moderator

Hi, 

My husband has stomach cancer and had a feeding tube for a few months at the start of his treatment. He had chemo which helped to reduce the spread enough that he was able to start eating slowly and drinking ensure drinks until he felt he could manage his own calories and asked to have the tube removed. 

I know you said your wife has had a stent put in, is that the reason they've removed her tube? Have you had a dietician or people from Nutricia (the feeding tube company) talk to you at all? Ensure are good small volume/high calorie nutritional drinks which make it a bit easier to get calories in, have you been offered them? 

I know how scary this all is but I can't imagine how scary it is when you also don't feel like the doctors are on your side. Getting a dietician involved to help you, asking for ensures, and possibly questioning why she has the tube removed when she hasn't started eating yet would be my advice. 

I hope she can start some treatment soon and start to be able to eat again.

Laura 

Thanks Laura

Yes they did remove the feeding tube at the same time as putting in the stent and clearly the doctors wanted the hospital bed because she was discharged only a few days later before she had been able to start eating anything other than soup and in miniscule portions. We have had lots of advice from nutritionists but if you have no appetite and feel full after only a mouthful the advice is not much help. She continues to lose weight and it's still 6 days before we get to see the oncologist who has been on holiday for the last 2 weeks. There does not appear to be anyone standing in for him. 

I'm doing everything I can to make the food she will eat as calorie rich as possible and use Complan a lot which is one of the few things she will drink. 

Interesting how different your husband was treated. I'm not sure why this is. How old is your husband? My wife is 60 and has been a very fit and active person and I suspect this is the reason they have tried to push her back into eating orally so quickly making the assumption that she could adapt quickly. Perhaps the doctors are right but so far the doctors have made so many mistakes. Apart from the A&E doctor who diagnosed the seriousness of the condition none of the doctors we have seen appear to have any more knowledge than we do. 

She is now having to take morphine as the paracetamol is not controlling the pain. From talking to another friend who lost her husband in his 30's I gather it's not that unusual to be suffering such pain very early in diagnosis particularly if the doctors didn't take your symptoms seriously early on which they didn't in his case either. I don't blame the doctors, they are doing their best in a broken system.

My husband is 36. To be fair, when this all started he wasn't getting much help and lost a lot of weight quite quickly, and it wasn't until my friend who is a GP called up his cancer nurses and his GP and arranged to get him admitted to hospital to get the feeding tube in. It was while he was in hospital that he was then put in touch with nutritionists and palliative care team, and when he had his first oncologist appointment, before that he was basically left to get on with it which wasn't ideal. 

He also took a while to get diagnosed and had to go private to finally get an endoscopy which discovered the cancer, by that point he was terminal with about a year to live. Stomach cancer is one of the hardest to diagnose apparently as it can look like lots of other things, it's brutal.

Is this going to be her first appointment with the oncologist coming up? Do you have contact numbers for anyone else at the hospital like cancer nurses or anyone? I feel like it might be a good idea to call someone, her GP even, to let them know she's not started eating yet and is (presumably) still losing weight. Maybe ask about whether she could get the feeding tube back in until she feels more able to control her own intake? 

Hi Laura

Wow that's young and a tragedy for you and him. I'm sorry to hear it. Your right about it being hard to diagnose. That has been a hard fact to learn. My wife went into hospital with pyloric stenosis (blocked exit of the stomach). Biopsies from 3 gastroscopies were negative but the gastrologists could see this was cancer and asked the specialists to look at the tissue samples again and finally they did see cancer cells. Later specialists at hospital looked at the biopsies and the original CT scan and saw it had spread. But this took nearly 3 weeks.

The comming appointment with the oncologist will be the second. The first was simply an introductory meeting while she was still in hospital. We were contacted and talked to a specialist cancer nurse who has been a lot of help and since Susan came home she has been referred to the community palliative care services and the local hospice. The palliative care nurse tells us that there are only 5 nurses to cover the whole of Hertfordshire!

So we do have some support in the form of advice. I suppose that's all we can expect. Susan does eat mostly liquid food but  it's very little and not enough to stop her losing weight so I'll certainly take your advice and ask about another feeding tube. We have been told that she has to be in good shape to receive chemo.

How is your husband now and when was he finally diagnosed? I really appreciate your replies. Thanks.

Lucy the "chat monitor" sounds rather like an AI so it's good to talk to a real person!

Thanks again

Ashley 

Ashley

Yeah it's been pretty horrendous to say the least! 

Simon's was found when an endoscopy showed that his stomach was "grossly abnormal" and they took biopsies and a a laparoscopy, and CT scans showed some in his spine as well. He was diagnosed in October last year, he had the endoscopy around the end of September and then was told it was cancer mid October and the full break down and prognosis was the start of November, longest month of our lives I think! 

That's good you've got a few people that you can contact. I'd say from experience, don't be afraid to get in touch with them as much you need, there's no point suffering in silence and it doesn't hurt to ask. 

I did think they'll be wanting her to be strong for the chemo so I don't see why they would be against a feeding tube, it does seem like it's a thing you need to ask for though which is weird.

He's not doing very well at the moment. His first round of chemo worked for a good few months and let him come off his feeding tube and eat pretty normally for a while which was great. His cancer has now spread again though and he's struggling to eat much again and the new chemo has made him sick as well. It's really hard watching eating become a chore and a frustration for him again, but he's so against getting another feeding tube put in until it's impossible not to basically, he hated it. 

Haha! I think the chat monitors are real but they just have to follow a bit of a script ! It's definitely nice talking to other people who are going through similar things though.

Thanks Laura

Susan's palliative care nurse says she doesn't like to use the word "journey" but then says "but that's what it is". And I can say it's also a massive learning curve in which you don't actually want to be learning that stuff. Like being back at school in a French class (my worst subject) only worse!

Anyway I'm sorry to hear your husband is suffering again. It's a nightmare! But you do give me some hope that my wife can have a bit longer. She has been thinking the worst ever since the diagnosis came through and that's been really hard for me to take. Your husband sounds like he is a fighter, it's a simplistic way to put it I'm afraid, we all take this sort of adversity differently. My wife is strong in many ways but this illness is pushing her into some very dark places. The eating thing is is a real *** with this cancer. I'm the cook of the house and not being able to produce food that she can or wants to eat is heartbreaking. Susan kind of got used to the feeding tube but she is glad that it's now gone even if nutrition is now much harder.

May I ask what type of cancer your husband has? My wife has the adeno cancer but there has been (still is) a little doubt due to the poor biopsy results. Also may I ask if he was offered any other treatment other than chemo?

Many many thanks

Ashley

Yeah it's definitely a learning curve, I've literally learned how to take this chemo pump out which is usually a nurses job, never mind all the stuff with the feeding tube and pump as well! 

Simon is strong but he did have his pessimistic times as well. He didn't think he'd get well enough to get the tube out at all and was really quite depressed about it all at the start. He's very practical and accepted the life expectancy quickly, although he obviously thinks it's hideously unfair which it is, but he really struggles with no eating.

His cancer is called linitus plastica, it's not tumours but is like the actual stomach flesh becomes hardened and thick, and then the places it's spreading to do the same as well. They've only offered chemo because operating would have meant removing his whole stomach and because it has already metastasized by that point the outcome would have been too bad. If/when this chemo fails they'll see if he qualifies for any clinical trials but it's a very rare form of cancer so that's unlikely. 

We have read about this form of cancer and Susan thought that this is what she had as well. I must say we still have a suspicion about the diagnosis. Similarly there is no specific tumor just a thickening of the stomach wall and ulcerated lining. It has spread to the pancreas and also abdominal lymph nodes so similarly surgery was not considered an option. However they have talked about immuno therapy but we have little hope that that would be possible mainly because of the difficulty of testing the cancer tissue to see if it would respond. I'm not certain how that works though. 

Anyway, although it's still pretty bad I am heartened that your husband's cancer was knocked back by the chemo and also that you managed to get to grips with the chemo and feeding tube tech. While in hospital Susan got frustrated with waiting for the feed container to be disconnected from the pump and disconnected it herself which freaked the nurses out bit! Initially when she was admitted they had to insert a PICC line to supply intravenous food. This was always a big source of anxiety as we were told the risks of infection were quite high and the staff were not all familiar with that risk. They were not happy to let her go home with the PICC line in place even though it could have been used for delivering chemo, so they removed it just before discharge nearly 2 weeks ago now.