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.

Hello, I’m just going to share my experience with you as it took a very long time for my parent to be diagnosed as well. They had tumours in lots of places, including the spine and it took a long time to find the primary tumour as it was quite a rare cancer. Once it was found they analysed it for mutations to help work out if there were any drugs that could help.
If the cancer has spread as you describe I imagine he will be offered chemotherapy with a view of extending his life as long as they can.
Once the cancer has spread it’s not curable, this is what metastatic is. Have they given you a name of an oncology nurse you can talk to while you wait?
I do know how you feel, the wait is absolute agony. Every week feels like a month.

Sometimes it is not possible to establish a primary tumour and is then a CUP 'Cancer of Unknown Primary'.

@BHRK no they haven’t given him the name of an oncology nurse. He’s not even sure which consultant he comes under yet, whether ENT or orthopaedic.

@Lizzy1328 yes they’ve explained that to him, and said he may need transferring to the CUP team.

It’s very difficult, I tied myself in knots thinking something should be done immediately. But sometimes nothing can be done immediately and actually, regardless of the primary, the option is chemotherapy. I’m so sorry you’re going through this

@BHRK yep, I’m googling like a crazy person, and I know that’s the worst thing I can do!

I may call our local MacMillan tomorrow and see if he’s been assigned a nurse. I think he needs to speak to someone outside of the family, he’s hiding how he feels, still being big strong dad but I know he’s struggling.

I understand exactly how you feel. My DDad has also been diagnosed recently. Thinking of you x

@EmilyGilmoresSass I’m sorry you are going through this too. It’s so hard isn’t it. I know we are not the only family going through this, but it certainly feels very lonely x

Thank you, I'm very sorry to you too. It really is horrible. I'm the sort to worry more about other people and bottle stuff up myself so I've noticed my own mental health dipping.

If it's secondary in the lymph nodes then won't know what type of cancer it is tbh at first .

My friend had symptoms and a full scan showed it was in slot if places but they didn't know where it started . That came later . They just need to get on and treat it .

@EmilyGilmoresSass my mental health is not great either, I have health anxiety so this has really took me to the edge with that.

It’s the ups n downs I struggle with. He’s had a call from his GP today who has said his back growths on his MRI look like injuries, old scarring and age to her, I’m not sure she should’ve said these things as he’s now thinking the hospital are mistaken. But it has lifted his spirit somewhat, which can only be a good thing.

My husband has cancer. The waiting to know exactly what was wrong and get a treatment plan was the worst time ever. If you're in the UK and there's a Maggie's Centre near you, I would highly recommend paying a visit. The one near us offers clinical psychology, although you can just go in for a cup of tea and a chat. They will fully understand your need for answers and the anxiety you are experiencing. Your dad is the one with cancer, but you need support too. If there's no Maggie's, MacMillan are also very good. Sending love and strength your way.

@DontBeSoSillyMargo thank you for your kind words.

I decided to chase his results today, consultants secretary informed me he has an appointment for PET scan results next Tuesday, she’s sent a letter today but god knows when that’ll arrive with the postal strikes, I’ve told him now so he knows.

It’s so strange, we don’t want the appointment, as it’ll no doubt bring awful news, but we do want it so that we can move forward.

We don’t have a Maggie’s nearby. Apparently he has been assigned a MacMillan nurse but doesn’t have her name or contact details, so I’ll make sure my mom gets those when they go next week.

6 more days of waiting now, any tips on not going insane?

I wish I had a silver bullet answer, but all I can tell you is what helped me through the especially terrible period between knowing it was cancer and getting a treatment plan. Try and keep as busy as possible, the activity doesn't matter. My cupboards have never been so organised or my freezer so full. Exercise also helps lift the mood, even take a walk with music on. Taking each day as it comes might sound like a meaningless cliche, but actively forcing myself to stay in the moment has saved me from meltdown on a number of occasions. It's hard to explain here, but I found the Headspace app very helpful.
Hard as it is to imagine, you will get through this. We're halfway through treatment now and - although some days are better than others - life is generally calmer and more normal and than I would ever have believed. I hope that's your experience too x

We finally have a primary, which is some relief, I was worried he’d end up under the CUP team. He has spread to lymph, spine and hip but the Dr wasn’t happy using the word terminal when mentioned so I’m hoping they can at least shrink things for him.

He has a meeting today to discuss treatment and pain relief 🤞🏼

I made a start on some jobs I’ve been avoiding in the house @DontBeSoSillyMargo so thank you for pushing me to keep busy. I hope things are ok on your end, as I know you’re going through similar x

My Dad started his treatment on the 15th of December, cisplatin, gemcitabine and carboplatin, the first round was awful he was so so ill, and lost a lot of weight, but he's been coping well since then.

He had a CT scan in February to check progress, he gets the results tomorrow, which seems a long wait, and he'll have had another 2 rounds of chemo since then.

I'm really hoping for goods news tomorrow, we have been coping well since Christmas and there definitely seems to be signs of improvement, less pain, lymph nodes no longer swollen, but my anxiety has really ramped up again this week.
Scanxiety is definintely real!

What was the news OP? Did you have the appointment on Thursday?

I think biopsies can be a little inconclusive depending where they took the tissue samples from and the type of cancer.

it may show secondary cancer. - metastasised cells from elsewhere etc but they need to find the primary to type and stage it, hence the scans - a pet scan possibly (where they use the dye and May do a full body scan) then probably more biopsies if they find any sites of “interest” to confirm diagnosis, type and staging.

I know of someone in a similar situation where they knew he had cancer from his lymph node biopsies but it took them a while to find the cancer had originated in the prostate so he has metastatic prostate cancer

ps: I’m sorry you are going through this. I think it would be good if you can ask your dad if he’d like some support at his appointments. He could be hiding something, or equally he could be in shock or just not ready to talk about it yet. He may struggle giving you bad news. Your his baby - he wants to protect you. I’m sure he will open up when he’s ready xx

He has responded very well to chemo, his words were the “tumours have gone”, now he’s due 6 weeks of radiotherapy to remove remaining “cancerous cells”.

My mom went with him and they’re not the best at asking questions, because it sounds a little odd to me. He came away thinking he was having radio on the spinal mets but they’ve x-rayed his teeth ready for removal, which makes me think it’s the head n neck they’re going to be using the radio on 🤷🏻‍♀️so I’m a little confused. But my dad is very happy, which is the main thing.