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 😞

There’s two things going on here – yes, a MacMillan nurse can speak to you if are under cancer investigation. My dad received contact from MacMillan at investigation stage, before diagnosis.

But you seem unclear as to what exactly happened at your dad’s appointment?

So sorry to hear this. I don’t know - all I can say is that in my df’s case, the consultant was very unwilling to say the word ‘cancer’ at the first appointment (following a scan where a mass had been seen), but my df insisted, and she admitted that they were around 95 per cent certain it would be cancer, but that they wouldn’t be certain until it had been biopsied (She said she virtually never says the word cancer to anyone at this stage, i think they like to wait for biopsy, so they can give all information about it (grade / type / stage etc). He was given the details of the ‘specialist nurses’ - and it was only later in the appointment we realised it was the cancer / MacMillan nurses, when I asked (at the same appointment) “are there any MacMillan nurses we can speak to?” And she said “yes, they are the specialist nurses I have just given you the telephone number for”. I wish you and your dad all the best - and hopefully, whatever it turns out to be (when they have all the info), the NHS are brilliant, and treatments can be extremely effective.

Similar to the above, we were given the details and had calls from McMillan nurses before the biopsy was done and the cancer was confirmed. This bit when you are waiting for the outcome and there is a lot of uncertainty is horrible so they are useful for discussing the process and any anxiety you might be experiencing.

I met with the MacMillan team when on cancer pathway , was mainly a discussion on staying healthy ahead of surgery and discussion about possible outcomes and how I was feeling etc. I had a stage one ovarian tumor removed along with full hysterectomy and other bits removed and thankfully the cancer was contained in tumour so no need for chemo.

If you're on a diagnosis pathway for suspected cancer then yes it's very likely you might speak with some from Macmillan. At this point, diagnosis is unconfirmed. Will you dad give you permission to speak with them?

I’m sorry OP, I can’t say for sure but there is a definite possibility that it is cancer. They would have taken biopsies from it so cannot say for certain until those have been looked at under the microscope. Sometimes you can get oesophageal ulcers.

If the camera couldn’t get down does he have difficulty with food going down? Has he lost any weight?

Don’t rush the steps ahead.

I'm sorry to hear this is happening to your dad and you. When my parent experienced stomach issues and was called for an endoscopy, an esophageal lesion (but not a mass) was found. My parent was told it was cancerous but also that the team weren't sure what it was. This was sort of by the by: they didn't know precisely what type of cell type was affected due to its position, but it was cancerous all the same. My DParent, seeking every scrap of reassurance they could find, sought comfort in the 'they don't quite know what it is' comment for a day or so, but appointments (dietician, oncology and a Macmillan nurse) were scheduled hard and fast on the back of the endoscopy, which subsequently confirmed the diagnosis.

For my DParent, it seemed as if not causing me and my siblings distress was a factor in wanting to 'down-play' the diagnosis initially; wanting to stay brave and chipper for us and DGC -could this be how your DDad is feeling?

I really hope there may be an uncertainty in diagnosis which works out in his favour, but in any case, it is a difficult time and I wish you both all the very best.

In the meantime, he needs to keep his strength up - if swallowing is difficult can he get advice from the MacMillan nurses / access to a dietician? My df was losing a lot of weight due to difficulties eating (and became very frail) so the dietician told us that he needed very enriched foods if possible, eg adding cream etc to soups, butter and cheese etc etc, and switching to full-fat everything. Eating little and often can also help with this. You can also get little bottles from pharmacies (and can be prescribed it) that are like little milk shakes but they are high density, high protein complete meals in a small bottle, might be worth considering, especially if he can’t tolerate much volume of food. Maybe he could ask the MacMillan nurses for a dietician referral? The stronger he is (physically) whenever you get a diagnosis (of whatever it is) confirmed, the better he will cope with whatever treatment. It can take up to three weeks or so for biopsy results to come back (which is very frustrating)..

I’ve just finished colon cancer treatment. From what I know from myself and others, if you get shown to the ‘doom room’ with the comfy sofa and box of tissues, it’s not good news. I’m sorry 😢

Absolute awful. my Hospital didn’t do that. It was just treated as ordinary and that was so helpful.

Thank you everyone for your comforting words, I'm just mid-bedtime routine with DD but wanted to pop on to see what you'd said as it's obviously weighing on my mind!

A couple of things to answer q's

• he's had gastric issues for about 4 weeks (gas and bringing up food if eating too fast)
• he switched to a liquid diet (Huel, soup, ice cream) before even speaking to a GP because he was finding eating difficult and those were the only things he can cope with
• He's a healthy and active 72 yo thankfully so I hope he has enough muscle and fat mass to cope with this diet change, I've not seen him in a couple of weeks and he didn't seem thin or frail then
• This is the first investigation he's had so I guess next step is biopsy
• he's very prone to blind optimism and being chipper in the face of bad news (not a bad trait !) so I think this is why I didn't 100% trust that he was told they had no idea it was cancer, I think he's been told it's a strong possibility 😣

@SpanishFlea
I’ve just googled, it is ‘fortisip’ I am thinking of - it’s like huel, but the key difference is that it is all packed into a much smaller volume of liquid, (it’s a small bottle) so he wouldn’t have to drink so much liquid (as in the huel) to get the same amount of nutrition and calories. It might be an idea to buy some over-the-counter from a pharmacy, they come in different flavours (my dad liked the banana one best, which is weird as artificial banana is usually awful! I would have thought the chocolate or vanilla ones would be best…).

Anyway, it won’t fill him up so much, (so he can eat / drink more potentially) but he will get more energy / nutrients from it. He can contact his GP to explain the issue (if he likes the fortisip), and ask if it can be prescribed..

Enriched yoghurt (full-fat high protein) is also good.

Edited to add: He might also be doing this, but trying to take in calories every couple of hours (little and often), if at all possible, can be good. Sometimes routines of standard mealtimes are so fixed that it doesn’t occur to people to vary that..

Second edit: he should focus on ‘cream of’ soups if at all possible (rather than just veg based), or stir in cream or butter for the last minute or so of simmering, if they are veg-based..

Oh I wish medical professionals wouldn't be so coy and evasive and would treat patients as adults.
When I went to the breast clinic about a lump they were very matter of fact and said we are 95% sure it's cancer. When I went for the results a Macmillan nurse was there.
Your dad almost certainly doesn't want to worry you so will fudge what he really thinks.

As it happens today I saw someone on a 2ww about a skin lesion. She turned to me at the end and did the head tilt, this might be cancer. (I know that! I'm not stupid, why else was I fast tracked.?) I explained that I understand and she said many people get this far and appear surprised to hear that's what's under investigation.

unfortunately it sounds like it’s oesophageal cancer which on a good day if you’re lucky you have 5 years if they can operate etc. usually by the time you start having symptoms it’s too late to do much. I’ve lost several family members from this horrible cancer and know more than I’d like about it .
it spreads very quickly from that location and even with the top experts and most up to date meds etc the longest this family had was 5 years but had to have 4 surgeries and complete voice box removal too and the shortest another family member had was 3 months from diagnosis to end. If macmillan are involved your dad knows what’s what but probably just trying to be chipper for you. Getting ducks lined up and spending as much as possible together having happy times is advised more than anything now x

He said he'd got a prescription for something that sounds like fortisip 🙏🏻 thanks for the advice! I'm seeing him on Monday next week now, he wants to come and help me with some DIY I guess to keep his mind off things!

I've been floundering around unable to properly concentrate on stuff which is a bummer as I've got some work I need to finish now DD is in bed. Hopefully I can muster a small bit of concentration to get this thing done!

Sorry to hear you've been through this a few times! I was reading about the five year outcomes at different stages which was worrying. This seems to have come on very rapidly so I'm afraid you're right about it spreading so quickly 😔 One good thing is that he recently moved house and is much closer to us (30 mins drive instead of 2.5h) so it'll be much easier to see each other regularly! I still feel in shock, more like someone has hit me round the head with a cricket bat than told me terrible news. I guess I'm holding my breath until the biopsy X

They should have taken a biospy at the endoscopy if they could manage to reach it. If it is cancer he will need further tests such as CT scan to assess the size and whether it’s spread. Then they can decide what the treatment plan is.

Treatment can vary on many factors such as where the cancer is, whether it’s spread, how fit he is etc. Surgery, chemo and radiotherapy are all potential options for oesophageal cancer.

If he gives consent, the MacMillan nurse can talk to you. It’s a good idea to be at any appointments with him if you can or make sure someone is with him as patients will not remember everything that is said.

The MacMillan website has a great deal of information so do look at that. There will be advice on there about eating and other people have given great advice. If he’s having difficulties, avoid things like pieces of meat and bread as they’re the worst offenders for getting stuck. Have everything in sauces and chew well. Add calories to small meals-grated cheese, cream etc and eat little and often.

Good luck with it all. I’m a cancer nurse and currently going through it on the other side with my mum having investigations. It’s not easy if you don’t live near.

So it was a macmillan nurse who told me I had skin cancer in the appointment following my biopsy. When I went into the room and saw it wasn’t the consultant (who I’d had my first appointment with), I breathed a sigh of relief. Then the nurse said she was from macmillan and said that it was cancerous. It kind of made the shock a bit worse.

@SpanishFlea I felt exactly the same, I felt very numb (and this lasted a long time - I have had counselling from my local NHS IAPT service, which has really helped). I also realised that it is a protective mechanism (emotionally speaking): so I became numb, but also seemed to slip into ‘highly practical and pragmatic’ mode, which was actually super-helpful, as it meant that things got done (and there was a huge amount that needed very quickly resolving when my dd became ill). Look after yourself during this time - and make sure you have all the support you need as well (while you are supporting your df) x

@PoorPhaedra Gosh yeah that does sound like a horrible shock, when you've got your hoes up like that 😞 My dad wasn't really clear about exactly what happened at the appointment, which is why I'm not sure if he had a biopsy at the endoscopy, I hope he did! I think it's one of those things where he was also in shock so was trying to manage my feelings and fumbled around on the phone about what to say, focusing more on trying to sound positive. Hence this post trying to unpick what he was actually trying to tell me.

I'm seeing him face to face on Monday (he went to a gig in London with his friends tonight!) so can ask more about it then. Texting about it whilst he's out enjoying himself feels a bit intrusive for now. Last night I sent an "I'm here for you any time, even call in the night if you're feeling alone or worried" and he was essentially like "Me? Worried? I'm more worried that I'm not worried!".

The main thing he does seem to have had a stronger emotional reaction to is wondering why it happened to him. He's actually a bit of a health freak; teetotal for about 30 years (not because of addiction), he's been vegetarian for about the same length of time, very active, avoids UPFs etc. I'm hoping it plays in his favour for treatment 🙏🏻