Stage 4 cancer... ? incurable? Thread #2 is here. In memory of our inspiring, lovely mowly77

[Tilllly]

New thread
All welcome, reluctantly

@TwigTheWonderKid @WrenNatsworthy @ShalommJackie

@lucysmam @SewingBees @Pinchaperfect

Thanks for the new thread. Having a little blub about Mowly. I joined the last thread just as she was leaving.

I feel weird today, a real mix of emotions. I had some counselling at Maggie's yesterday which was really good but of course forces you to think about stuff you need to think about but might usually avoid. The day before I had a final consultation with my orthopaedic surgeon - the back scaffolding is doing fine so he doesn't need to see me again. I did chair yoga yesterday and walked, without sticks, further in a day than I have done since last October. So lots of positives on the surface but deep down I'm feeling really gloomy.

I'm going back to work next week, so today I'm going to make a dress to wear for my first day back in the office. I've had the fabric and pattern for ages, just need to crack on with it.

Why do you think you feel gloomy @SewingBees?

Is it anything to do with moving on from a safe space - in the throes of all the cancer treatments and Appointments been off work, horrific as it is is a familiar safe space. And now those support mechanisms with your doctors and so on have been taken away and you are going back to normal life. It's a big step and it's scary.

@Tilllly It could be that. But I'll be ok, I'll bounce back. Thanks for asking x

Shall we do a roll call/ introductions? I'll kick off...no need to put personal stuff in if you don't want to.
I'm a 54 year old mother of 15 and 18 year old boys (oldest at uni) living just outside Wimbledon with my lovely husband who I've been with for 33 years and our cat. I work for a charity.

I had breast cancer in 2022 which was successfully treated but last May I had "appendicitis" which turned out to be a very rare and very aggressive stage 4 appendiceal cancer which has spread to my colon, bowel, ovaries and peritoneum.

Have had 8 rounds of CAPOX in the hope it would shrink enough to make me a candidate for very specialist surgery but I've just been turned down for that so for now I am off treatment and will be rescanned in April.

When I was diagnosed last June I was told I'd have around 6 months without any treatment. I guess I need to pluck up the courage after my next scan to ask that question again.

I am generally stoic about all of this, no "battling", and no "why me?", because why not me? , just trying to keep plodding on for as long as I can, but I am totally devastated at what this will do to my lovely boys.

Sorry, that was loooooong!

@Tilllly Thank you for setting up this new thread.

@SewingBees Me too, I also joined just before Mowly got admitted to hospital.

My introduction story sounds like a badly conceived soap opera. Diagnosed with early BC at the end of 2016 after finding a pea sized lump in my right breast. All set for lumpectomy, no other spread. Planned radiotherapy only. Then came the shell shock of discovering (referred to NHS genetic testing based on my dad’s family history of BC - he also had it and died of prostate cancer eventually) I carry the bastard BRCA2 faulty gene. My initial diagnosis was ER/PR +/HER2-.

Lumpectomy went ahead but no radio as they immediately suggested I go for preventative double mastectomy and later on oophorectomy (removal of both ovaries) to reduce the chance of cancer coming back. I was all for doing it without reconstruction but my late DH had sowed seeds of doubt in me and I opted for DIEP flap reconstruction which was a much longer wait as I had to go to a different hospital which had a plastics ward.

All well until July 2020, smack in the middle of lockdown, when I felt a massive lump in my right lymph node, on the same side of breast initially being treated. How I hadn’t discovered it much earlier God knows, I was checking myself religiously.

2020 recurrence was still treated as primary (locally advanced), not spread anywhere else, and because the lump was so big I had neo adjuvant chemo (7 sessions, including the Red Devil), then surgery and finally standard 15 rounds of radiotherapy. Went for check ups after that, every 6 months, but their stock answer was that they don’t do any scans unless they need to. Which I thought was not good enough.

Afterwards I started suffering from extreme health anxiety and was always fearful it would come back as stage IV. Well, my “prayers” were answered in March 2023 - I pushed for a CT scan based on my health anxiety and based on the fact that in the meantime, my DH had been diagnosed with a brain tumour (glioblastoma, so stage IV). Marathon runner and fitness freak extraordinaire with the sharpest mind perished in 9 months since diagnosis. Traumatic doesn’t even begin to describe what the whole family went through in those 9 months. We have a DS who will be 12 in April.

Looks like my BC has mutated somewhat and is slightly lower in its ER/PR status, and is now HER low 2. I suspect I would be the candidate for Enhertu (approved on NHS in Scotland where I live), but first it needs to get in check with nab Paclitaxel. I am having CT scan on 8th April to see if that has been effective.

Anyway, I got the dreaded phone call on 22nd March 2023 - “We found something”. I nearly fainted as I knew that they meant. It turns out I have mets on both parts of my liver. How long for nobody can tell me - I had another “reassurance” CTscan in February 2022 and all was well. Prior to the scan in 2023 I hadn’t had any symptoms whatsoever apart from a persistent bitter taste in my mouth for 2 weeks.

Anyway, I am on my 3rd line of treatment now, IV chemo (nab Paclitaxel as I turned to be allergic to the bog standard Paclitaxel). I shaved off all my sorry excuse of my hair yesterday as I was shedding like mad.

The absolute worst part of this shit show is the fact that DS will become an orphan. This thought kills me every single day. I have a Power of Attorney and a Will already set up - my late DS’s sister and her husband will become DS’s legal guardians. They tried for children via IVF but it didn’t work out. Brother in law also lost both parents by the time he was 18 (mum dying of pancreatic cancer when he was 5, dad in a car crash when he was 18), so I am “comforted” by the fact that BIL will totally understand DS’s grief and the challenges that this will pose.

I am still incredibly angry for having been dealt this fucking cancer card, especially since my DH also had it and perished with it. DS also has a history of epilepsy (had successful resection surgery 5 years ago), so fucking hell, I haven’t had a break from an illness for a long, long, time.

I got so sad to read of Dave Myers’s death this afternoon. Cancer, you fucking stupid shit (although it is actually very cleverly devious and insidious)!

My story: bog standard estrogen receptive breast cancer diagnosed May 2021, had lumpectomy, 5 rounds of radiotherapy, initially told that would be it but after analysis of the tumour chemo was recommended so went through that. Informed I had a really good prognosis and (like @balkanscot ) no need for further scans. I will always regret not following my gut instinct and paying for an annual private CT scan. Was never told what to look for that might indicate metastases.

January 2023 I tweaked my back and it never got better, I thought I'd pulled a muscle but it gradually got worse until in October 23 I thought it must be a slipped disc. Nope. Fucking cancer in 4 vertebrae and in November one completely collapsed meaning I couldn't sit, stand or walk. Operation to insert rods and pins in December 2024, still recovering but I can sit, drive, walk a bit and stand a bit. Not sure I'll ever tap dance properly again. No sign of any further spread so it's Ribociclib, letrozole and Denosumab for me, I'll find out in a few months if it's working.

I'm 51, have a 7 year old daughter and live in Northumberland. I relate strongly to a local tree that stood tall in the face of adversity and was cut down in its prime last year.

Thank you!

57 yr old mother of 2. Eldest a doctor, youngest at uni

BC in 2021 successfully treated

Chest infection in October - stage 3c lung cancer. An environmental genetic mutation - probably caused the BC

8cm and lung collapsed, across the mediastinum and into other side lymph nodes
Inoperable, too advanced for radio

Having chemo and immuno. Had gamma knife to get the 7 brain mets - yes 7.

Latest CT shows the tumour is a bit smaller but there is a spread in the lymph nodes. Tiny chance this isn't a spread but a result of the immuno
If it is a spread, then chemo isn't working and we go to last option, which is a tablet to target the mutation and hold it for "up to 7 months"

Hi, I watch your threads but I don’t usually post. I don’t have cancer so I don’t qualify but I do have Motor Neurone Disease. I don’t battle hospital appointments like you all have to do but I relate to your emotional rollercoaster. I too have children who are all under 21. I get the pain of smiling when I hear about people’s holidays, seethe when I am told I look well (but I can’t bloody stand up) and yes we could all be hit by a bus tomorrow (unlikely, I can’t stand). I understand the feeling of being on the outside of life.

On the up side, my telephone hospital appointments last 3 minutes - these muscles no longer work and there is zero treatment for MND. I don’t have the exhausting battles you all experience.

I often read your threads at 4am and feel less alone.

@NewNormalNotGood Lovely to hear from you, serious illness can feel so lonely.

I had a work Teams meeting today with the person who has been covering my role. She told me I looked very well. I'm steeling myself for hearing this non stop when I go back to work next week.

But I've probably said it unthinkingly to others in the past and internally they've groaned. You just can't understand what it feels like until you're going through it.

Hugs x

@NewNormalNotGood please feel free to join us as an "honorary" member (not much ch of an honour, I'm afraid). Apart from the irritation of appointments and treatments which make us feel worse, it sounds like we have much in common and you've hit the nail on the head with your comment about "being on the outside of life".

I had my op today. Fuck me it's painful. I'm in overnight because my oxygen was low so I'm on O2. DH came and brought the overnight bag I packed in case and came in with 2 naughty bags of Percy pigs, and 2 Pepsi max! He got emotional so didn't stay long, I think it was the oxygen mask that upset him most.

I've got a pca that I'm happily pushing at the intervals I'm allowed and I've also got an epidural in plus I clearly had a boat load of local before they closed because that bit is totally white and numb.

I tried morphine in the recovery room, she gave me full dose of ondansetron and said to tell her when I felt sick or woozy as she pushed the morphine in. She go to half a ml and I projectile vommed across the room and sounded like I'd had 20 gins so she walked off and came back and slapped a red wristband on for morphine allergy! That's why I had to have the epidural. I knew all the people in the recovery room and all my colleagues came into see me afterwards which was lovely but hard to keep yourself covered to be decent with all the drains & wire etc

It was made worst to realise I was on an incontinence pad and sheet because my body decided to start my period a week early on an operation table with my colleagues operating near my fanny 😭👍 fuking cheers!!!

Hope yourve all had a better day xxx oh and my surgeon said he got out the big swollen lymph node, then all of the ones matted with cancer, then because I also consented to a laporscopic look around if there was time and he removed 2 dead tumours from my peritoneal cavity 2 from my spleen and 3 from outside my kidney. All pathologically dead as they did frozen samples. So I'm only left with 3 hopefully dead tumours in my left lung.

I look and feel like I've been hit by a train but it's for good reasons

I don't post here often but I do read regularly.
I'm 57 mother of 3 (all adults now). My initial BC was found in 2017 during my first ever mammogram. It was small 17mm and I had a lumpectomy and 15 rounds of radiation. Chemo was apparently not required and I had 6 years of totally normal life. I tried Tamoxifen but the side effects for me were horrendous.
All was well until last year when I noticed that the nipple on the lumpectomy breast had pulled in. I had only had my yearly mammogram a few months earlier
My GP referred me straight away and I was sent for a check up at the hospital. The breast surgeon was just horrible. He was rude, dismissive and told me there was nothing wrong and my boob had just sagged as I was getting older. He ordered another mammogram there and then and that also came back with nothing showing. Then he did an ultrasound and said the scar tissue was maybe a bit denser than before. He eventually decided to biopsy me. It hurt like hell, he did it 3 times and the bruising was horrific, it lasted for 6 weeks!
Anyway, outcome was that the cancer was back in the same place as before.

To cut a very long story short, I had CT and then a PET CT as they couldn't get clear results.
I saw the same doc again for the results. I had also asked about a lump on my windpipe. He skim read my scan notes and told me the lump was also cancer.
I got a phone call one day from a receptionist asking me to come in for a lung test - I asked why and she said it was to investigate the lump in my lung.
I had no idea what she was talking about, this was news to me! I was fuming that I hadn't been told this by the breast surgeon.
Lung doctor did some tests and confirmed that I had a lung nodule that was likely cancer too. I asked this guy to show me the scan results and he said there was no lump in my neck at all, and no cancer there, he even examined me to check.
While I was still reeling from this I get a call from the scan receptionist asking me to go in for an MRI to check the spots in my spine for cancer. WHAT? No-one had bothered to tell me this either. At this point I got PALS involved and demanded to be moved to another team as I had totally lost faith in the original one.
Oops, this has done on too long already but upshot is that I have stage 4 metastatic BC with 2 tumors in my spine, one in my lung and one in the original breast site.
Oh and a week after the mammogram they gave me to check the markers were in the right place from the biopsy, I get a letter telling me my mammogram showed "no worrying features"! FFS, what about the tumor I saw on the screen then?
It took over 4 months to start treatment. I am on Palbo and Letrozole and just to top off a very very long story, last cycle they gave me the wrong dose of pills and then admitted they should have given me a lesser dose. I was on 100mg, they gave me 125 instead which tanked my bloods and screwed me up for 3 weeks.
I am in the process of a formal complaint to PALS and the GMC.

In case anyone is wondering this is Wye Valley Trust Hereford Hospital.

Sorry for the offload and thanks for reading if you got this far!

Oh @Englishrosegarden that's utterly shit. Well done for having the energy to complain.

I think we are so vulnerable, physically and emotionally, that when the people who are supposed to be helping us let us down with their carelessness and destroy the trust, it's really devastating.

@Englishrosegarden That is utterly shit, you must be furious and rightly so. I do hope your request for a move to another team is successful and you get better care from now on x

@ShalommJackie
I don't often chuckle at these posts but the projectile vomit and the period starting did raise a smile
If you're going to do it, do it thoroughly!

You'll feel a bit better every day now

FFS @Englishrosegarden
That's a dreadful ordeal, absolutely terrifying to be put through all that, you have to have confidence in the team around you

Well done for raising it. It can't undo what you've been thru but it might make improvements for others after you

I've been awake so much, I have a lot of chest pain and the intercostal thingywotsit in my side, whilst improving, is still painful

2 weeks to the palliative care consultant

Have whacked up the oramorph to 5ml 4 times a day, plus the 20mg zomorph twice a day
Still think the 6 hrly paracetamol does most good
But am never pain free now

Good morning everyone and thank you for the new thread.

I'm a 51 year old mum to 4 adult children and I have 11 grandchildren.

After what can only be described as a catalogue of failures from my local hospital (the very hospital I work at) fighting to get appointments, fighting for someone to take my symptoms seriously, an idiot consultant, appalling treatment by A&E staff & two complaints to PALS I was eventually diagnosed with stomach cancer in August last year. I had to have a feeding tube put straight into my intestines as the cancer had completely blocked my stomach.
My cancer was "curable" though.
The plan was for me to have 4 rounds of FLOT chemotherapy, followed by surgery to remove my stomach then 4 more lots of FLOT as a just in case.

Then followed another series of failures leading to a delay in me getting my chemotherapy.
Because of my stomach issues and alongside the chemotherapy I was very ill and ended up in hospital more than I was at home.
They decided to do a CT scan after my third round to check it was working but unfortunately it didn't touch my cancer so they decided as the cancer was still contained in my stomach it was safe to just go ahead with the surgery.
Unfortunately I was woken in recovery to be told they couldn't do the planned surgery as when they opened me up they found the cancer had spread to my liver, pancreas and some blood vessels even though none of this apparently showed on the CT scan.
I was told my cancer was no longer "curative" and instead I would receive palliative treatment only.
They did however do a stomach bypass while I was under meaning I could have the feeding tube removed and I could eat and drink again (although I still have some minor issues with this).
I'm not a candidate for immunotherapy or anything apart from chemotherapy. They tell me my cancer is very aggressive.
I'm currently receiving Paclitaxel and I'm due to have a CT scan in a couple of weeks. If this chemo isn't working my Oncologist has said he has another chemo we can try but if that doesn't work then treatment will be withdrawn and I will be put on symptom management only. If the treatment does anything to stabilise the cancer then I've been given a prognosis of 12-18 months but shorter if the treatment doesn't work.
I've just started the process of medical retirement as my Oncologist doesn't think I can go back to work because of the infection risk and the side effects of chemo.

I have made an official complaint about my care or lack of should I say.
Writing it all out was upsetting as it really highlighted the wasted chances and appalling treatment I received.
I do not think my complaint will go anywhere but I felt like it had to be done.

For the most part I generally try to stay positive and upbeat but of course I do have my fears and down days.

For all of you on this horrible journey we are on I wish you nothing but the best and positive thoughts.

Damnit, I had 3/4ths of a response typed out then the cat did something dumb and I erased it somehow with my sleeve!

Thanks for the new thread - I think of mowly now and then and wonder about how her daughter is doing. I haven't been on the last thread very much because I didn't want to remember all that went down for her in those strange few weeks.

Short version - Stage IV MBC, diagnosed september 2019, bones only blah blah blah. 46 with husband and two cats, no kids. Was doing well until last April or so and since then its been awful - two drug failures, worsening mobility, lot of pain from inflammation in my glute muscles due to who knows why now, one drug gave me a serious case of pneumonitis in January that I am almost recovered from, but the hip pain took over and thats been just nasty over February. Im so very tired at this point of being poked, prodded, not being listened to or taken seriously, etc. I cant even take the anti-inflammatories I should be taking because Im on prednisone for the lung issue, so instead just get a bunch of oxy thrown at me. I haven't slept decently for more than a handful of hours in weeks.

I too have noticed (and experienced) worsening of care since oh, last summer, but especially since January. Scheduling is always a mess now, oncologist is making strange decisions like she isnt sure WHAT is going on with my hip (I mean i can get a second opinion if you need it just ask!) or has me confused with a different patient, Ive had wrong medication issued or not at all, my bloods were continually going out of whack until someone noticed my potassium was almost at a critical level, and I still don't know the results from my scan five weeks ago because scheduling sent me to a different oncologist than my usual (i have private care specifically to NOT have to have different oncs). Its just giving the impression of no one listening and that has led to growing issues of trust and disengagement. And the lack of engagement with my actual team means I now feel a lot of anxiety and stress because I dont know what is going on and/or feel shuffled off for some reason. The whole system, private and public, just is groaning under the weight of need I think.

I’ve just read @GoldenDog1 ’s post. That is appalling mismanagement. I think I’d be copying your complaint to as many places as possible- including the GMC. I wouldn’t care who I upset, that’s a story of outright negligence

I have stage 4 fallopian tube cancer - so basically ovarian cancer. Treated the same, and same poor prognosis. But with the new parp inhibitor drugs some people are getting longer.
Right now I am pretty well, which is why I don’t post much, but do read a lot. There’s a lot of knowledge, experience and compassion on this thread. I have been on it since Mowly started it, and found her last posts so hard to read and imagine how things were for her.

I was a Dr till I gave up for my children. I was only diagnosed because my GP knew that I had been a Dr, and had other very significant stress going on in my life. He thought he was allaying an anxious menopausal woman. Then my Ca125 came back at 1072, normal range 0-35
He said ‘but it doesn’t present like that’
I should have replied - ‘well something has’

Could have been diagnosed months sooner if the specialist nurse I saw before an actual GP had stepped outside the algorithms they follow and taken the same simple blood test.

I absolutely agree the system is overwhelmed, but also think the professor are no longer thinking like they used to- and it’s more about avoiding spending money on investigations. It’s short sighted, we cost them more in the long run.

Professionals are no longer thinking. Should have read it through before posting