How did they miss it? - Rant

loveall · 24-01-2022 11:35am #1

Just letting off a bit of steam.....

So, September 20 some medical problems. Saw consultant March21. Day after taken into A+E with pulmonary embolism found on MRI. Given Eliquis, anticoagulant, for six months. Nurse calls a week later to say they've forgotten to tell me I need B12 and are sending script to GP for injections every day, then every two days, then monthly. A telephone appointment for 7 months time has been made for me with the consultant.

Wean off Eliquis at six months to be taken back to A+E with chest pain and breathlessness. While waiting the pain passes as quick as clicking your fingers after 4 hours of dire situation. D dimer results ok and I'm told anxiety or a pulled muscle. I don't suffer anxiety over these things and the pain is no pulled muscle. I go home. No investigation.

Doctor doesn't want me off the Eliquis and continues to prescribe. The telephone appointment with the consultant has been postponed until Feb21. November and I get the same pain. It's a crushing chest pain and breathlessness. Under breastbone to the left. No option but to return to A+E. The same chap who told me it was a pulled muscle walks into the room, says nothing and leaves. A nurse comes along and wheels me to another part of the hospital. I'm in a bad way and hoping someone will get to me soon. They didn't and when I got up to the reception I collapsed. They take me through and the pain has gone, just as last time. A million miles an hour to 0.

This time bloods read high amylase. They're convinced it's pancreatitis but there's no pain when they palpate. That's not where the pain was! They keep me in (under a different consultant to last time) and are delighted with themselves to find lots of little gallstones. Give the explanation that a small stone must have moved into the pancreas causing the pain. It's the height of covid and they'll bring me back to remove. I kind of couldn't believe my eyes they were sending me for abdo/pelvis MRI instead of chest....but sure, what do I know. Now, they want me off the blood thinners to do the op. I'm really not thinking getting off the blood thinners is a good idea!!! They're not hearing me at all.

I'm home less than a week and find a lump in my left breast. Off to the GP to be given an urgent referral. 8 weeks later and I'm seen. Biopsy taken and a week later told it's triple negative breast cancer. Day before I got the results, the hospital calls to tell me to come in to get gallbladder removed. I'd been told at the biopsy appointment it was probably cancer and to stay on the Eliquis and hang on to my gallbladder. Told them to scrub me off the list. Next week I find out how far it has spread. Following week, chemo starts. Now busy trying to work out how to organise life around this.

It seems commonly enough known that blood clots are a thing with cancer patients. D dimer results are not to be trusted in cancer patients and raised amylase is a tumour marker. How could they miss it?

At the moment the MRIs are being gathered and I'll be fierce interested to see what oncologists make of them. I'm hoping they don't come up with some BS excuse like they've gone missing after the hacking. I could do with knowing how aggressive this is.

So there was my rant. Nothing I can do. I'm not even old!!!

GoogleBot · 30-01-2022 2:34am

https://www.boards.ie/discussion/2058229573/how-did-they-miss-it-rant

If you are not too old and have any willpower left, please research into prolonged fasting, ketogenic diet and IF. It could extend your life for many, many years.

loveall · 30-01-2022 1:14pm

https://www.boards.ie/discussion/comment/118552881#Comment_118552881

Halfway with you on that. My brother has been keto for 5 years and my mother uses it occasionally but falls off the wagon. My grandmother was a size30. I couldn't face eating all fat and instead eat low fat, no butter, with the rest keto, so no white bread, rice, pasta or spuds. I'm ideal in my BMI plus I walk a mountain every morning for at least an hour so there's no need of anti depressants ever. For me it's the right thing.

Funny, I've heard people moaning about their ailments when I've been behind the curtain on the wards and I always know the ones who'll be overweight. It's a game for me at this stage :)

If you took out the moaners from the system the docs would listen more. Really winds me up. Last time I had a stay I listened to the woman opposite telling anyone who'd listen about her internal bleeding, possible appendicitis putting pressure on her colon; real life and death stuff. Listened to her "poor me" at the top her voice on her mobile. She put all her belongings into the presses and around herself, then the nurses came in, took her away to remove her slipped coil and turned her loose. She'd been there an hour at most. She asked for pain relief and was given paracetamol. Heard her on the phone to the husband saying she'd had morphine, was terribly groggy and wasn't to do a thing for at least a fortnight. That's definitely not what the nurses told her. Even said it could have been done by a nurse in the GPs surgery.

Then on leaving, she ate the head of the dr advising her, praised the nurses for their work through covid, whilst running this chap down to them. One bitch will always find another. Poor chap. Just awful, and I knew it was going happen before she reared up on him - just cos she was embarrassed at putting her shite back in her bags. And yes, she was in the obese BMI category.

And then people wonder why it's hard to be heard!!!

loveall · 30-01-2022 1:19pm

Oh and.....I read that fat may feed triple negative breast cancer. As it's not hormone receptive it makes sense. I think that little voice in my head that was afraid of going keto and making fat my main source, had a point. Each to their own hey :)

I'd be pretty sure a gallbladder op is a money spinner. Problem is when money is saved on scans etc. when you really should have them. Stop moaning people!!

30-01-2022 1:23pm

https://www.boards.ie/discussion/comment/118554373#Comment_118554373

the joys of ED.

WTF... · 30-01-2022 1:28pm

Very sorry to hear about your diagnosis. It’s worth asking your oncologist about immunotherapy and sacituzumab govitecan. The latter was approved late last year for tnbc.

loveall · 30-01-2022 1:40pm

https://www.boards.ie/discussion/comment/118554449#Comment_118554449

Thanks and I'll look into it. I'm a musician and not keen on the possible peripheral neuropathy I might get in my hands. I'll know Tuesday how far the spread is and chemo is due to start at the end of the week. If the spread is as bad as I can feel, then I'm not sure about doing it at all. Problem is I'm not due to see the consultant to discuss any of this until after the first round of chemo. Thinking I might have a chat with my GP.

Even had to fight for a brain scan which I thought odd as bones and brain are first places of metastasis. Anyway, got it and I'm in good form; what more can I ask for :)

30-01-2022 1:44pm

Oh, if it makes you feel better though OP, I went to ED with similar problem, couldn’t breathe well and every time I inhaled it was like being stabbed in the chest.

Initial diagnosis was lung clot, CT had them scratching their heads, 3 weeks later transfer to Vincent’s, CT read to them as either lymphoma or sarcoidosis.

that was October, they’re still not sure.

WTF... · 30-01-2022 1:57pm

Its good they’re starting the neoadjuvant chemotherapy reasonably quickly. Hopefully the cancer is only localised. Tnbc can be aggressive but some people can have a very positive response to chemo so don’t give up hope yet.

loveall · 30-01-2022 1:58pm

https://www.boards.ie/discussion/comment/118554516#Comment_118554516

That's not good Lucas Better Sack, hope they get it sorted for you soon....doesn't make me feel better ( ;) ) makes me feel.....ggrrrrr........

They didn't want to send me for a scan at all at the time of the embolism. Only for a very young dr from Iraq, I'd not have got it. He fought for me and the surgical team eventually sent me down. They were all apologies when they saw the pulmonary embolisms. Simply, without him and the blood thinners I'd be dead by now. There's a large percentage of people found to have cancer within the year after a PE. Ugh.....grrrrr......:)

30-01-2022 2:01pm

https://www.boards.ie/discussion/comment/118554595#Comment_118554595

It’s shocking tbh. You’d think the FIRST thing to do if they suspected a clot was verify with an X-ray or CT!

loveall · 30-01-2022 2:03pm

https://www.boards.ie/discussion/comment/118554586#Comment_118554586

I hear you WTF. I'm a positive person and really appreciate life and all its wonders.

loveall · 30-01-2022 2:10pm

https://www.boards.ie/discussion/comment/118554607#Comment_118554607

Oh they were so sure I didn't need it. I was absolutely blessed that young fella fought for me. The amount of time they spent arguing over it was unreal. The young fella was tearing his hair out and angry. The 4 strong team of surgical lads thought themselves way above him. They all apologised to me, but what use is that?

30-01-2022 2:17pm

https://www.boards.ie/discussion/comment/118554645#Comment_118554645

Fecking surgeons all just mad to cut someone open! 😂

loveall · 30-01-2022 2:23pm

https://www.boards.ie/discussion/comment/118554694#Comment_118554694

Yep, the last guy was great but the one before was a proper little narcissist. Takes all sorts :) Just mind that money tree!

loveall · 30-01-2022 5:13pm

https://www.boards.ie/discussion/comment/118554449#Comment_118554449

WTF the plan is taxel and carboplatin, adriamycin and cyclophosphamide (AC). My issues started with bleeding for 5mths back in 2020. I've seen prognosis median without treatment and I don't know how far down the road I may be already, but it's 13.3 months. Love umbrella statistics....all bllx. I need the scan results and a true interpretation of them. I've got good reason to be a bit cautious. I can definitely feel the branches of the money tree and wouldn't like to be a patient for profit. The aftershave of the big pharma wafts through the place.

I'm good with pain and at the moment. Pain is intermittent, arms, legs, ovaries. 9mths of permanent gnawing, crawling sensation spreading to my spine. Head is good but permanent tinnitus. It's new pain although I'm already getting used to it. For very short periods, it's debilitating. If the episodes get longer, I've no option but pain meds.....which could be chemo. Aches and sensations I've learnt to ignore, but they're changing. Could be a clotting issue, although that's a cancer symptom.

My life is A1 at the mo. Not always been like that and everything changes. I'm not frightened of chemo. I'm frightened of never getting off chemo. I'm about to poison the beejesus outta meself when I'm very able to deal with my decline since 2020 and have no choice but to continue to do so :) If that's short then I'll do as much as I can for as long as I can. Chemo is going to make that hard.

I know chemo is the only treatment and there's parts of my body I know would benefit. There's also bits I don't think will.

Remember here, I've not yet been staged and don't know extent of spread. But so far I've called all of this 100% They don't have results yet either, which is a bit disconcerting!

The bone scan people had a good time. I've refused hinges and plates for arm and leg breaks. The surgeons, mad to operate, said I'd be deformed; "If there's nothing for it to attach to...." I said if I was, I'd come back and fix it. Met people with similar operated on breaks and they're fckd with them. Yet I'm perfect, lost nothing.

I thought wondering if to stop blood thinners to get gallbladder out was a head wreck....lol. Some pain with that.....wow. Need to talk to GP about what he can give me. Wonder what he can give without a consultant over him.

Sorry, waffling, put it down to cancer in the brain :)

WTF... · 30-01-2022 6:58pm

It looks like they're taking the right approach.

You can see recommended treatment protocol for stage 1-3 on appendix B here: https://www.mdanderson.org/content/dam/mdanderson/documents/for-physicians/algorithms/cancer-treatment/ca-treatment-breast-invasive-web-algorithm.pdf

Chemo side effect management has come a long way and the clinical team should be able to help you with it. Also I think they could possibly repeat scans at some point during chemo and stop if the therapy is having no effect. Sacituzumab govitecan might be a potential 2nd or 3rd line treatment option.

Hopefully it hasn't spread.

loveall · 30-01-2022 7:26pm

https://www.boards.ie/discussion/comment/118555961#Comment_118555961

Seriously helpful WTF, thank you. Yep, hoping it hasn't spread and I'll respond super quick. I'd feel more reassured by them if I was seeing the oncologist after results and before the start of chemo. I'd thought I'd have another chance to talk before then and without the results I can't ask the questions. The clotting worries me. I wouldn't want to be in a vegetative state.

Anyway, picked the wig :) Just being as practical in my thoughts as I can. Thanks again.

loveall · 01-02-2022 5:28pm

@WTF...

I'm very pleasantly surprised. Results back and no spread. Cyst on liver to be investigated but fingers crossed it's just a cyst. So I'm thinking the worsening of my pain and fluctuating hearing could be clots. Really thought the increased pains were a sign of spread which convinced me of chemo. They've already said the clots will be well monitored but chemo will exacerbate the problem. Wishing I'd pushed for a more main hospital for the chemo.

If it's not spread and limited to lymph nodes why do I need chemo? The lump is 2cm and that wouldn't require chemo to shrink it to remove. Wouldn't it be safer to just remove it and the nodes? Make decision on chemo after removal. I swear I'm getting more lost by the second.

01-02-2022 6:58pm

https://www.boards.ie/discussion/comment/118566663#Comment_118566663

obv not your doctor but if I was to guess the clots (and any anti clotting medicine you’re on) might make surgery less appealing and a bit of a risk they’re not super willing to take right now?

WTF... · 01-02-2022 9:58pm

https://www.boards.ie/discussion/comment/118566663#Comment_118566663

You're correct in that the 2cm tumor could be removed surgically without chemo. However there are some advantages to giving chemo first. One of the main objectives of chemotherapy, whether it be before or after surgery, is to kill micro-metastasis. A micro-metastasis is a tiny collection of cancer cells distant from the primary tumor that are so small they arent detectable on imaging tests such as CT, MRI etc. If left untreated they could eventually turn into a metastatic site, essentially stage 4 cancer. If you start chemotherapy and it isn't working (i.e. the breast tumor isnt shrinking) this is valuable information for the oncologists as the chemo is unlikely to be killing any possible micro-metastasis too. If doctors see the chemo isnt working it gives them a chance to change to a different type of chemo or proceed to surgery and try a different type of chemo afterwards. If you only did surgery first and chemo after the breast tumor was removed you wouldn't have any indication if the chemo was effective and you'd lose the opportunity to try a different type of chemo that could work for any possible micro-metastasis.

This is my understanding of neoadjuvant chemotherapy, sorry if I didn't articulate it very well. Your doctor should be able to explain it better.

If they are worried about clotting they could possibly give you clexane or something during chemo.

01-02-2022 10:26pm

Hope you get sorted.

Wife spent 6 years In periodic abdominal pain. Was diagnosed with crohns and medicated accordingly. They refused to investigate the appendix.

We left Dublin went to kerry and she's in pain again. This time went to the bons.

First thing they say is who diagnosed crohns. It's not crohns. They removed a rumbling appendix. Took her off her autoimmune meds and she hasn't looked back.

loveall · 01-02-2022 10:34pm

@WTF... Got it. That makes sense. Thank you and I read through the stuff you linked the other day too. Super helpful. I'm going to make an appt with my GP to talk it through.

All systems go then. Wigs ordered :) I wish I knew why the new pains, but to me it feels like clots....like a bulge and an explosion, in my back especially. It's happening more often and more noticeably. Wakes me up. The arm pains are in exactly the same place on both arms and ovaries are like flashing light bulbs....lol. Legs ache all the time since the PE. I've not been short of breath in a sentence for a month or two, which is great. Nothing I can't handle and I'm very aware how lucky I am.

loveall · 01-02-2022 10:38pm

https://www.boards.ie/discussion/comment/118568197#Comment_118568197

We may well suffer the same problem of "Fool me once......." :)

loveall · 01-02-2022 10:42pm

https://www.boards.ie/discussion/comment/118567105#Comment_118567105

You're not wrong Lucas Better Sack, but it'll have to be done at some stage. Imagine them wanting me off the blood thinners to take out my gallbladder. It's no wonder I'm questioning everything.

loveall · 04-02-2022 11:06am

Went to se the GP and he sent me straight to hospital for bloods. Just getting my head round the pain is cancer and clots are part of the package. They're going to do an MRI.

The trip to hospital has highlighted my concerns and I'm feeling much more confident they'll be ready for the clotting problems during chemo. Every day seems a bit worse which makes getting chemo easier! Got the script for pain meds but so far I don't need them.

I've got this, no problem! :) Got a busy week ahead getting everything around me sorted and comfortable before chemo starts.

Thanks for the help and especially to @WTF... I was blessed with your replies :)

How did they miss it? - Rant

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