Does speaking to a MacMillan nurse after endoscopy mean a cancer diagnosis?

[SpanishFlea]

My dad has had some stomach issues the last few weeks and had a camera investigation earlier today. He just phoned me to say that they found a 'growth' on his oesphagus that was too large to fit the camera further down, but they 'don't know what it is'. He also said he spoke to a MacMillan nurse. He didn't use the word cancer except once where he sort of said it was cancer, but he mostly focused on telling me that they don't know what it is.

I'm just wondering for my own understanding (as he's currently being upbeat about it so I'm not going to tell him the answers from this thread!), would he have spoken to a MacMillan nurse if it might not be cancer? In other words, was my dad telling me clumsily that he has oesophegal cancer?

FWIW I was upbeat and positive on the phone, however, this is all a bit of a shock. Happened only 10 mins ago so please be gentle with me 😞

@decorationday No I wasn't aware of the helpline, I'll look it up thanks! And thanks for the reassurance on the CT scan. Maybe he hasn't been told anything then, although he did say he spoke to Macmillan today and there's some type of treatment happening on Monday. I guess if they don't know what it is, how could they treat it? Unless it's discussing nutrition or something?

I'm staying over at my dad's on Friday, so I'll see if he opens up. I won't force the matter as I think he needs time to process it all before telling me (I also have a brother and as far as I can tell he's informing us both the same).

I hope people don't mind me using this space as a sort of therapy, I feel better about things when I write it all out and there's a chance someone could reply!

Hmm, you're right, that does sound a bit mixed messages and difficult to know what to make of that. You know him better than any of us, so perhaps like you say he is trying to process things.

It might be easier for him to talk while you're there doing other things and the focus isn't 100% on him - maybe you have had the experience where children start a difficult conversation with you when you're in the middle of cooking or driving because it means you can't turn your focus entirely on them? It's less intense and therefore sometimes easier to say tricky things.

Of course we don't mind you posting here. It's one of the things this space can be good for. Keep posting as long as it feels helpful to you, but please don't ever feel obligated to post or to share information.

There's some info here on the support line and their website generally is a good place for carefully curated info: https://www.macmillan.org.uk/cancer-information-and-support/get-help/macmillan-support-line

@decorationday Thank you, really appreciate it! Yeah we'll see how the conversation flows. I'll be cooking for DD and myself (as he's on the prescription liquid food) so could bring it up then if DD is occupied with something else!

Yesterday my dad suggested he take my brother and I to a coffee shop to fill us in on what's going on. I replied to say I'd be happy going to a coffee shop but could we talk about it on the way as whatever the news was, I didn't fancy hearing it surrounded by other people in case it was upsetting.

My dad then phoned me and told me about treatment (chemo) and the next steps of investigation (checking size, whether it's spread). Still avoiding using the word cancer. I said, so if they're treating it, they know what it is then? Did you get results back? He said yes, it's a cancerous growth in his oesophagus. He's still being chipper and positive about it, which is good. My feelings have been a bit complicated as obviously I'm incredibly sad, but have been a bit angry that he's not said what it is (the last week has been like pulling a plaster off slowly!), then guilt that I'm angry, then sad about what it is, then positive because he seems positive.

I've known for ages that he's terrified of death and getting old, which has really driven his desire to keep fit and healthy, so I completely understand why he's skirting round saying the word cancer, because it is a big, scary word! He deals with it by being super positive, which I think is a good thing, but also avoidance which is what's caused him to skirt around the issue so much. I don't think he'll avoid dealing with it though.

I'm glad I know, and will certainly be spending a lot more time with him from now on. My brother lives very close to him too. Thanks again for all the support 🙏🏻

I’m so sorry to hear about your dad, but I want to tell you about my dad. He was diagnosed with oesophageal cancer in 2014 when he was 71, and had an operation to remove part of his oesophagus and connect his stomach upwards instead. He could only eat very small amounts for a while but built it up over time. He’s back eating normal meals and is now 83.
I hope your dad has as good an outcome as mine, and I’ll be thinking of him x

If it helps to know, my grandad had oesophageal cancer in his late 60s, he had a operation and chemo and lived till he was 82. 🫂 sorry about your dad op. X

I'm very sorry to hear that, but I am glad that he has a treatment plan already and he is feeling positive about it (and that you do at least know now what's going on). Don't feel guilty for however you're feeling - you're having normal human reactions. Just treat them as waves to ride out.

I really do wish you all the very best. Be gentle with yourself over the coming days 💐

Small update - mostly as I've not really been able to talk to anyone in real life about this as I feel like it's a topic people aren't really that happy to chat about! He's had a PET scan, results due Friday - we'll see the extent of the cancer then. If it's not spread, the plan is to have chemo for 8 weeks then surgery to remove the tumour. I think we're both coming to terms with the news now and feeling positive - I've been making kombucha so I'm saving bottles of that for him (to help with his immune system during chemo) and planning on taking round different vegetable broths. He tried making a broth himself and said the onion in it kept repeating on him and it was awful. I love cooking so I'm hoping I can make something he'll enjoy anyway - with no onions 😊.

The intention is to move in with him for those 8 weeks of chemo - for company and to help with cleaning and other chores, then I actually have a sabbatical planned to help settle my DD into her new school in September, so that's been "well timed" for supporting him after surgery! Of course it all rides on the PET scan results on Friday, so fingers crossed it hasn't spread.

Keeping everything crossed for you OP. My MIL had oesophageal cancer 5 years ago (75 when diagnosed and presented in the same way as your dad). She wasn't deemed healthy enough to have surgery but had a few rounds of chemo and some radiotherapy. She turned 80 a few months ago and apart from difficulty eating a few things, she is totally fine.

It’s good that he’s got someone so organised but check with your oncology team about the Kombucha somethings that are brilliant ordinarily have the different effects if you’re having chemotherapy

Yes it’s good to do a quick search of foods, supplements and herbs that are actively discouraged during cancer treatment. I am undergoing treatment for a different cancer and having radiotherapy and surgery and the restrictions were counter-intuitive.

I am sorry that for your DF and your family that you are having to deal with this diagnosis but it sounds like you have some flexibility to be with him though the coming months of treatment. Pace yourself and take it easy.

Thanks for the kombucha tips! I'll take a look - he's not on chemo yet so maybe a good boost for now before he starts. He apparently gets a nutritionist so they will know more than me about it!

@magicstar1 sorry I missed your message before, that really gives me hope 💗and @CrunchySnow too! 💓

He's an otherwise very healthy 72 year old so I'm hoping he copes fine with surgery. Everything is crossed the PET scan doesn't show spread. 🙏

If it hasn’t spread, then hopefully he won’t have to have chemo. My dad didn’t have any, just the op.

I’m sending prayers and best wishes to you and him x

The tumor is fairly large so they want him to have chemo to shrink it - I think the chemo is a given unfortunately! I think the type/intensity of chemo will be different if the cancer has spread. Thanks for the love and support @magicstar1 I hope my dad has a similar outcome to yours! x

He's so lucky to have such a supportive daughter. Hope all goes well for your dad.

OP you really are such a fantastic,supportive daughter. Your dad is in good hands .
Sending you all my support and prayers.
Just one quick thought. Do you have a soup maker ? You could make up some amazing,protein filled,calorific soup for him .
So easy,not requiring any special skills .X

Thank you, that's lovely of you to say! I don't have a soup maker, but I have a "Le Creuset" style casserole dish I use to make soups. Unfortunately he's tried soup and it won't go down so I'm going to make broths for him and use the veg in other food for me and DD.

Get a liquidiser. I have a swallowing disorder and liquidiser everything. You can make soups or buy tinned soups and make them really runny. I also have ensure drinks on prescription from the GP. I also,liquidize vegetables like potato,and cauliflower. Add water to make them runny . Hope that helps

Thinking of you and your Dad today @SpanishFlea

I’ve a friend who is currently 15 years post oesophageal cancer. She had chemo and one huge operation but is absolutely fine. There can be positive outcomes

How is your dad doing?

@Pimlicoo Thank you! The PET scan shows the cancer isn't in his lymphatic system, phew!💃 He's got a keyhole op on his stomach booked in to look at the top part of his intenstine as a precaution and also fit a feeding tube directly into his stomach so he can up his calories. I wouldn't say he's underweight yet, but he's unable to be as active as he usually is because of the lack of calories.

@childoftkty Thanks for this! I'm much more hopeful than I was. I stayed with my dad on Friday night again and I always feel loads better being with him as he's very positive.

@MintyPig1989 Thank you for asking, we cross posted. He's fine other than tired from lack of calories (and unfortunately waking up in the night due to saliva build up 😖)

I'm glad to hear the update from the PET scan. It sounds like he's got a very good care plan and everything is progressing promptly. There is much here to feel positive about.

That’s great news for you all. Hopefully by the autumn all the treatment will be behind him.