Stage IV cancer? Incurable? Roll up, roll up, this thread is for you!

Bleh, another 4 weeks of this. Consult was fine but there is a lot of muscle inflammation and I can't pinpoint the actual source of pain. I figured it was going to go this way, though, and rads onc wants to hold for the latest scan in early october, the secondary opinion with the surgical specialist end of this month and then rads planning ct. I'm booked in for everything but still have to spend the next four weeks limping along.

Starting to get concerned maybe this is a rare muscle metastases presentation. Nothing about my cancer has been straightforward or 'normal'. I envy women who get a garden variety stage 2 diagnosis. I know its all highly individual but THIS individual? I dunno.

So its frustrating but whats new. Even if I end up swapping treatments I should hopefully be on the mend by Xmas. Just a year wasted, nothing much :(

Hi everyone, its been a while again since i posted.

I hope youre all coping/managing as best you can.

I have to say I'm seriously fed up of all this s

Just to remind I have metastatic breast cancer to my liver. Also had a tumour taken out from my heart as well as a mastectomy

Last week I found a raised lump like area on /near my sternum on the right side. I went to the gp, he said he thinks it thickening scar tissue ( even though the rest of the sternum is completely flat and feels normal, and too keep and eye on it. two days later i got a appointment through for a scan of my heart on 25th september. which is odd as I saw the consultant cardiologist on 31st August who said he was very happy with me and he didn't need to see me until my yearly heart scan next year and follow up appointment, which the appointments have already come through for. So i'm thinking has the gp changed his mind and ordered a scan to check it out? what annoyed me was he said, well, the thing is youre already on chemo arent you? erm, yes, but i can't have lumps popping up and not tell anyone can I ffs.

The yesterday, to add to tge fun, I have found i think two more lumps, to the left of my mastectomy, level with my arm pit just lower, so I've rung the oncolgy nurses and the breast care nurses as because it's on the treated side I can ring them direct.....no one has rung yet. I realise they're busy, I just feel a bit like, oh, your stage four, got your chemo and painkillers, cheery bye...left on the scrap heep. they clearly need to change my treatment which I know was coming at the end of October based on my last appointment, but it needs to be sooner.

sorry to moan

Moan away @Pinchaperfect , it's what this thread is for!

The lack of joined up, holistic care is almost as waring as the bloody cancer itself I think. I realised a while back that all oncologists care about is chemo, that the poor GPs don't have a clue and the cancer nurses are either excellent but totally run off their feet or actually a bit shit. It's only now that I have the community palliative care team from our local hospice involved that I feel I finally have someone on my side who understands the system (or lack thereof) and will advocate for me.

Hello.
I occasionally look at the other cancer thread but don't post, but last night I found you all, and I'm one of your people.

I'll try to be brief - I have a rare cancer that nobody has heard of - Ocular Melanoma.

In April 19 I was diagnosed (massive tumour in my left eye that grew secretly for ages and didn't initially affect my vision), 2 weeks later my eye was removed. It's a nasty cancer with a high metastatic rate, so you get 6 monthly liver scans as that where it usually it goes. Metastatic cancer was confirmed in my liver in March 20. Hello stage 4.

I had immunotherapy which is much more effective for ordinary melanoma, it caused lots of side effects and I eventually had to stop.. I now have pancreatitis, diabetes and arthritis from immunotherapy.

There is a liver directed treatment that works for OM mets in the liver - we often can't have resections because the mets 'pepper' - lots of little tumours everywhere that grow. It's called Chemosaturation and it's not available on the nhs so we fundraised for me to have 3 treatments in 22, and it worked. Liver tumours inactive and stable, shrunk considerably. Had it done at Southampton Spire and they were amazing.

Back to the NHS, and regular scans. Unfortunately Mets popped up in my lungs. I got told this in July on a ten minute phone call from my oncologist, who advised a tablet that probably won't work anyway. I'm still unsure about what to do about that. Anyway his advice was to go off treatment and concentrate on quality of life. I asked him about how I'd know I'm dying and he said I'd get an distended stomach and be breathless. Bye bye end of phone call.

My Aunts and I are busy persuing a second opinion but I am absolutely worn out with all of it. I have done lots of supplementing, meditation, went vegan for a while, read all the books about people in remission etc etc

I'm bloody knackered with all of it. I had a cancer review at the GP last week and they are referring me to our local hospice for support. I've just upped my antidepressants.

It's my son's GCSE year and I need to get us both through it plus my husband who is also on antidepressants.

So that's my happy story!
Thanks so much for starting this thread. ❤️

@TwigTheWonderKid you are absoloutley right, it is very exhausting. It's your doing all the admin work yourself and a doesnt speak to b so you have to keep repeating yourself again and again.

@WrenNatsworthy wow, that phone call sounds truly awful

@HerbalRefreshmentt I hope things will resolve for you soon. Keep talking to those herbs!

@Pinchaperfect Oh that all sounds scary. The nurses need to get back to you and give you some support. The feeling of being abandoned is awful. Do you have access to any kind of palliative care?

@TwigTheWonderKid Yes indeed. I am very lucky in that I get a palliative team at my hospital. There are lots of different kinds of clinics and support, and all the various teams communicate. I haven't seen a GP since getting cancer. However even so I find I need to keep a sharp eye on my appointments as they tend to go wonky and no-one else will sort it out unless I tell them to.

Welcome @Thinblueglass and @WrenNatsworthy but sorry you're here. @WrenNatsworthy that oncologist sounds brutal. I winced reading your account of the phone call. I hope the hospice has some resources for you to get kinder and more humane care.

Yeah it wasn't the best! I got referred to him from Sheffield where I had my eye removal, have only seen him face to face twice, the rest has been over the phone. He's an abrupt man, told me I could expect 18 months in June 2020 when I'd not asked. I beat that though!

Southampton were so much better at answering my questions and going into depth about size and position of tumours etc. Those consultants and surgeons also work in the NHS too of course. They just have a much better manner.

I do feel so blessed that we have an amazing hospice where I live and it's a comfort to know it's going to be there for me eventually.

I relate so much to what's been said on this thread - the feeling of being an onlooker, the strange jealousy of those with curable disease - even though I'm not the only person in my group of friends to be diagnosed, I'm the only one so far with incurable disease. I love my friends of course and I don't want them to die either, but there's also a lack of understanding in that our situations aren't the same.

I'm not scared of the actual dying part but I feel terribly guilty about leaving my husband and son. and I'm not fucking ready.

And breathe!

Really struggling here today, scanxiety has hit big time. Had a bone scan on Monday and my oncologist had promised to phone me today with the results. Stomach has been churning all day. By 2pm I hadn’t heard anything so rang the unit and was told that the oncologist was still at her clinic but would definitely phone. Nurse has just run 5 minutes ago to say the results are not back yet

Oh no @Elisebev that's really rubbish. So that's your weekend entirely ruined then. Did the nurse give any indication of when the results would be back? Are they going to chase them?

Sitting around this morning (Australia) feeling sorry for myself with a nasty head cold and chesty cough. In the immediate family a mother two adults and one child have what appears to be the same virus and have ended up on antibiotics for chest infections.

Because I am being treated at the Research Hospital there is no direct emergency service, I have to use A&E at the adjacent public hospital. When I knew this cough was setting in I spoke to the BC nurse then went in to A&E hoping to get some IV antibiotics. Instead I got to sit in a bed for 8 hours, basically got told by an A&E “well what did you think dying was going to feel like”, then discharged with a script for oral antibiotics. Spent yesterday in bed with a box of tissues and cups of tea and today am sitting inside in a comfy chair enjoying the sun. The antibiotics are making a difference and hopefully will clear this up in time for the CT and bone scan on Tuesday.

Just grumbling about stupidity and insensitivity really! We get told by the cancer clinic to go in for iv antibiotics if in doubt but then get told it is unnecessary by A&E.

It is a lovely day and I won’t waste any more energy on stupid people…enjoy your Sunday.

@Thinblueglass basically got told by an A&E “well what did you think dying was going to feel like”

What the fuck. I am raging on your behalf. Was it a doctor or a nurse? I get that they don't always want to give antibiotics if the infection is viral, as they won't do anything unless a bacterial infection has developed. But their attitude is so unacceptable no matter how burned out they may feel, they should try to keep their compassion fatigue to themselves and think what they like internally but refrain from taunting the seriously ill patients. Do they think they are immortal and will never be in need of kindness themselves? And so unnecessary for a simple cough, why not just treat it instead of offering stupid comments. I'm so sorry you were harassed by an atrocious cunt with minimal brain cells and less charm than an echidna's penis. And you can tell them I said so, with diagrams if necessary. Grrr.

I've been told the same about going to Emergency at any sign of fever or infection but honestly I don't know how that would go for me either. It's scary as we are so vulnerable!

Glad you have been able to rest up in the sunshine with cups of tea and I hope something nice to read or watch. Hugs to you. 🤗

@Thinblueglass I am joining in the rage on your behalf. How dare they say that to you.

@mowly77 keeping everything crossed for Monday for you.
Yes we're seeking a second opinion and are waiting a response of an email that we wrote carefully - being mindful of the consultant ego.

@LuciaPillson you go to emergency whenever you need lovely

@Elisebev hoping you get results ASAP too

I'm feeling a lot less miserable, invited a bunch of friends round on Thursday. 2 of them have had breast cancer and one is living with heart failure but we spent most of the evening wetting ourselves laughing. So that blew away some misery, and I went on to have a fun weekend too.

Sorry @LuciaPillson I meant to edit what I wrote to you above. When I was having immunotherapy I had a number I could call about side efects. I got called in to hospital 3 times to be seen.
The thought of just wandering into A&E is pretty terrifying.

Thanks for the support.

I am usually pretty pushy when I think something needs attention health wise. He (of course it was a bloody male) was the senior A&E Consultant and initially it seemed like he was reasonable etc but there was definitely an undercurrent of “why are these oncology patients bothering us in A&E, we have more important/urgent things to do.

I think the suggestion of additional lung progression was/is fair but it was the chest infection that was causing the distress. As it is clearing up (which started within 12 hour of taking antibiotics) I am noticing a step down in lung function and I see I’ve been booked into the respiratory clinic for Friday.

Don’t know that I will be able to complete a bone scan on Tuesday as I can’t lie on my back for long enough. Well I will see what happens today.

So my only wisdom would be to take someone in with you to advocate if you aren’t feeling well and have to go to A&E.

I have had two hospitalisations for an infection in the past 6 weeks. Both times I've had a fairly long wait in A&E whilst a bed was found on the Acute Assessment Unit but I was kept isolated from the start ( so no waiting in waiting room) x-rays done, my blood tests were fast tracked and antibiotics started whilst I was waiting to be admitted. I'm happy to say I felt taken care of by everyone I came into contact with and I'm so sorry for the awful experience you had @Thinblueglass

@TwigTheWonderKid I am glad to hear that your hospital is delivering on their promises.

I’ve had a call fro the trial team this morning Amanda we are still on track. Pushed out the CT and Bone Scan til next week as will reassess capability once the respiratory testing is done. By the end of next week I will either be in the trial or have started the standard treatment (Xeloda) as the oncologists don’t want to leave me off treatment for too long.

Well I hope we all have satisfying weeks whatever that means…

Thanks for your support, let’s not lose this it’s better than all the Facebook pages.

@Thinblueglass sorry for your awful experience.

Just to update from my moan last week, after many many phone calls, the oncology nurse rang me early friday morning to say that, even though she was on leave from thursday, my oncologist had replied to her email, and yes they're going to move the ct forward and follow up appointment. The nurse said she had emailed and spoken to ct and it is marked down as urgent. Though I know from previous chats with someone who works there that urgent means about two weeks, so, we shall see, if anything they'll talk about me in the MDT on wednesday and hopefully that will remind them to push it forward quicker. Though the nurse did say so the doc would be back next week for the follow up, but I just don't believe a ct scan appointment will just appear out of thin air.

Speaking of facebook groups, are any of you on them? Im on one for stage four, but it seems to be mainly American, so they advice etc is all different. Any uk groups about, do you know?

Also, wondering, if any of you know, who I can talk to about pain. I know the nurses, yes, but, obviously they just prescribe me painkillers. I wasn't expecting to be in so much pain at this point. The cancer is in my mastectomy, so, on my records it say breast/skin. But the pain I've been in has really gone up a notch this weekend. Some of it before I know was nerve pain from the mastectomy. So I get random stabby pains, deep aches and other feelings, but now I get this feeling like a painful squeezing sensation, if i didnt have the lumps there I'd think I was having a heart attack, seriously.( Im thinking because the lumps are growing they're interfering with alot of nerve myabe?) Was in tears last night, and thats with taking strong doses of co codamol and some morphine. I'm sorry to be graphic, I dont say it to upset anyone, its just to try an explain and wondered if any one had advice.

@Pinchaperfect during my last hospital admission the palliative care team came to see me and then organised for the community team from the local hospice to come and see me when I got home. Pain management is their speciality; they know what pain medication is suitable for different types of pain and above all they are kind and caring. I think you you should be able to get your GP to refer you.

@TwigTheWonderKid Thankyou, I will definatley, try and sort that, seems to be the sort of thing I need.

@Pinchaperfect I'm in a Facebook group for people with Ocular Melanoma Mets - so all stage 4

I don't post/ go in it all the time. Some of my family members are in the group so I don't want to bare my soul in there. I prefer the anonymity of a forum for that!

@Pinchaperfect I’m on a few stage 4 groups. Stage 4 deserves more is good. Also 2nds together group.

im STILL waiting on my scan results. Am surgically attached to my phone at the moment