My DDad has cancer

[Itsvalentino]

Very new diagnosis, he hasn’t said much at all.

He claims that he was sat down, told he has cancer, they don’t know which type of cancer, and booked him in for a CT scan in 2 weeks.

The results are off the back of swollen lymph nodes/swelling in his neck, ultrasound and biopsy.

Google tells me that a biopsy determines the type of cancer, my dads saying they didn’t know. He seems to be drip feeding info, he didn’t say much to begin with, but has since said they’ve told him it’s advanced.

His face is now swollen too. I’m so worried.

I am sorry for you and your family. It does seem strange that they know the cancer is advanced but not the type. Could your dad have been in shock and not taken it in properly? or could it be a type of cancer that he is embarrassed to talk about? Bowel or prostrate for example?

Maybe it’s just too awful for him to talk about.

my dad didn’t say much in the beginning then when he found out it was terminal and he told me he was just so broken.

he got very angry about not being fit and healthy and only being able to walk a few steps at any time, it’s horrendous

When I was told my diagnosis I was told to take someone with me to take notes because often the shock means you can't actually remember the details.
It sounds like your dad has just forgotten some of the information. For exactly that reason, I was sent a letter by the oncologist that said 'In our meeting I confirmed that you have xxx cancer of stage yYy and we discussed your treatment etc' He may receive a similar letter.

When is his next appt? Can you go with him.

I think he’s withholding the information. Although he did say he was only in there for 5 minutes.

In September he had the following tests:

Full bloods, including LDH - all normal
Nasal endoscopy, which checked nose, and oral cavity - both normal.
No further axillary or groin lymphadenopathy.

Around May/June he had the following:
Chest X-ray - assume clear as nothing reported
Ultrasound on or around bladder, polyp found.
Poo sample - blood found, but Dr said not enough to warrant concern.

It’s hard to know if he’s got any symptoms of anything specific as he’s been recovering from a fall he had in December 2021, where his hip, ribs and shoulder were injured. So he’s been in pain in those areas for a while.

He’s early 60’s, still working full time.

He has a CT scan next week.

He had a CT scan after his fall in December which was clear.

He went alone to his appointment, as we were all expecting good news. He’d waited nearly 4 weeks for the biopsy results, and had a call 2 days before to say they'd had a cancellation and did he want to come in for his results, so we assumed that it wasn’t being treated with urgency.

Im sorry that you have been through this yourself.

When they told you to bring someone with you, was that for the biopsy results appointment?

When they told you to bring someone with you, was that for the biopsy results appointment?

Yes. And I admit, I hardly remember anything from that meeting, so having those notes was invaluable. Shock does odd things to your memory, and some cancers can give you brain fog anyway.

He may not be withholding information. He may be in denial, in shock, or simply not have understood.

He said that they told him they didn’t know which cancer he had, and they weren’t going to start cutting him open.

Im just in shock, with the amount of tests he’s been having for 10 months, I thought they’d have found something sooner.

It's another week before his CT, and then waiting for those results, it just seems so long to wait for answers.

With DH we were told it was cancer long before the biopsies revealed what cancer it was, his diagnosis was off the back of an ultrasound and his symptoms. He then had scans, biopsies (several attempts to get a sample as they all came back inconclusive) and a PET scan. It wasn't until he had his surgery and the tumour was removed for biopsy that we got a definitive diagnosis of cholangiocarcinoma with liver mets (the PET scan eight weeks before had shown no secondaries). Don't assume he would've been told to bring a friend for support, sometimes you have to ask (sadly).

Will he give you permission to speak to them?

I guess I’m clutching at straws here, I’ve been googling obsessively (which I know full well I shouldn’t) and it claims that a biopsy will show type and stage of cancer.

So to me, he’s either withholding that information, or maybe he was told it looks like cancer but we’ll need further tests to confirm.

I flick from imagining the worst, to thinking it’s all a mistake.

Who would I speak to?

I would try the consultant that gave him the diagnosis to begin with. You could ask him if he has a nurse specialist involved, DH had one pretty much throughout (although he didn't get an oncology nurse specialist until he started chemo), nurse specialists often have more time to speak to patients and their families.

I’m so sorry you are going through this. My dad was diagnosed with stage 4 bowel cancer at 63 and as soon as he was diagnosed he also behaved quite awkwardly and strangely making it difficult for the rest of us. I think he found it really hard to process and he was embarrassed in a rather old fashioned way about it being “bowel cancer” - which is partly why it took so long to diagnose I think! I’m so sorry that you are left with this frantic uncertainty. Really hope you get answers soon. Once the initial shock has worn off he may be easier to talk to

It’s difficult to talk about, we’re not a talky family, well I am, but my mom & dad tend to keep a lot to themselves. I’ve tried to get my mom to see if he’ll open up, but she can be a bit forceful and I don’t want her to upset him.

He's still making plans, looking at new cars, searching for holidays for next May. I have moments when I’m optimistic but then the pessimist in me ramps up.

I’m just wondering whether my dad should’ve been assigned a nurse or given contact details for MacMillan? He still hasn’t had a follow up letter, confirming anything.

I'm so sorry you're going through this. I recognise the ups and downs of optimism/pessimism you describe. The shock and uncertainty is absolutely crippling.

I would echo the advice of a previous poster to contact the consultant in the first instance. There should be a follow up letter to summarise the discussion - ours took about a week to arrive and gave details of type and staging of the cancer, next steps, lifestyle advice etc. If you don't have the consultant's details, ring McMillan for a sympathetic and practical ear.
I hope you get some answers soon so that you can at least feel a bit more in control, it does help (in my limited, but very recent, experience).

@DontBeSoSillyMargo thank you for your reply.

He has now been booked for a surgical biopsy this week, which has confused matters further. I’m wondering whether he wasn’t given a definitive cancer diagnosis? Thats not me saying he’s lied, he just wouldn’t, but maybe misheard?

I didn’t think they carried out a surgical biopsy, if a needle biopsy had already confirmed cancer. Also, no follow up letter (2 weeks tomorrow since he had the news), he’s spoken to his GP about pain relief for his previous accident injuries, and nothing was mentioned.

I’m hoping not too long to wait now. CT tomorrow, biopsy Thursday, fingers crossed we’ll know more by next week.

I'm no expert but I think a surgical biopsy allows closer examination of cells than a needle biopsy. The only way to know for sure if your dad's had a definitive diagnosis is to speak to the consultant or maybe GP. If you can wait for the results of the CT scan/biopsy that will give a clearer picture anyway. I fully understand the dilemma of wanting to know what's going on, but being fearful of what you might hear. In my experience, it's better to know. The stress of uncertainty is too much to bear. It would be good if somebody (maybe you?) could go with your dad when he gets his results. Wishing you all the best.

His letter came today, it says the following:

Reported appearance suggestive of malignant poorly differentiated epithelial neoplasm, with differentials of neuroendocrine features, melanoma or lymphoma and further core biopsy advised.

So, things are not much clearer at the moment. I’m struggling to understand what it means and google hasn’t helped.

My mum has recently been diagnosed with cancer. We 'knew' it was cancer for two months before we got a diagnosis via biopsy. From what they saw on scans, blood results etc, the doctors couldn't see what else it could be. It's a difficult time for you all, I hope you get a definitive diagnosis soon.

We finally have a diagnosis, Dr called yesterday and said squamous cell carcinoma, no other information given, other than he’ll now be moved from the ENT team to another team.

Thing is, it must be in the lymph nodes as that’s what they’ve biopsied, they haven’t taken samples from anywhere else on his body.

6 weeks down the line and still no definitive diagnosis.

2 days after being told he had SCC, a letter arrived in the post saying metastatic poorly differentiated SCC, referred for MRI.

Last week he was told MRI had show he had features in keeping with tumour deposits in the spinal bones, referred for Pet scan, which he had yesterday.

He's in so much pain, losing weight, and so so down.

How much longer do we have to wait? The not knowing is horrendous for us all.

Sounds like they are still determining what stage it is, OP.
One day at a time may be your only sane way forward.

Staging and also looking for the primary according to his last appointment, they don’t know where it started.

I’m like an obsessed lunatic, I can’t think of anything else, really wish I could switch off and have the attitude that worrying won’t change anything but I can’t.

They can't recommend best course of treatment without more information , I suppose. Would it help you to ask your dad what you can do for him today - and do it. I wonder if there's a way to focus your anxiety to help both you & your dad.

He doesn’t really need anything, my moms looking after him well. He can’t go out n about as he’s at risk of spinal paralysis due to the tumours. Which is awful, as I know he’d just really like to get out of the house.

He’s trying to keep everything light hearted so when I’m around him, I do the same.

Its just been a very long 6 weeks.

Thank you for your replies, I do appreciate it