AIBU to be angry at the nhs cancer service

[Pandoraslastchance]

In January i found a lump. went to the Gp who did the two week referral to the breast clinic. Ultrasound showed 'possible hormonal lump' i swapped my coil to the non hormonal one. lump continued to grow and become more painful.

April-back to gp with pain in breast and redness around side of breast. told to take anti-inflammatory medication and rest.

Start of May-pain gets worse so back to gp. nothing new, more advice to take ibuprofen and rest.

Mid May-back to the gp as the lump is getting bigger and more painful. Whole breast is now red and hot to the touch and skin is very tender to the touch with a strange bruise underneath-apparently that is where the abcess is sitting. Diagnosis of possible abscess so given antibiotics and to take painkillers as required.

End of may-still no improvement so change of antibiotics.

Mid June-its getting bigger but told not to worry.

End June-with no improvement i get referred back to the breast clinic for ultrasound scan to locate this abscess and possibly drain it. my breast is red from underneath (where your bra wire would sit) all the way up to the top of my breast. Its angry redish purple, hot orange peel skin and sunken nipple. i cannot sleep due to the pain and i spend most of my time with a wet teatowel over my breast to try to cool it down,

Middle of July-scan cannot locate an abscess so breast doctor wants to have a punch biopsy to identify what this skin infection is (after a 10 minute lecture on nipple piercings and how ive bought this on myself with my 'vanity' and how as a nurse i should know better than to inflict this on myself) punch biopsy done.

Start of August-we have the results back and you have stage 3 breast cancer, you will need chemo, mastectomy, followed by another round of chemo and then radiation therapy and this needs to be done quickly. Given a folder of leaflets and a booklet on breast cancer.

Im not going to see a consultant for another 2 weeks. It will be 5 weeks since the team got the biopsy results back. 5 FUCKING WEEKS! before i will even be able to see an oncology consultant, let alone start chemo so it will be september before i start chemo. i will have been complaining about this 'lump' for 9 pissing months!!!!!

Im 32. ive had babies and i extended breastfeeding for 2 years for my younger two to reduce the risk of breast cancers. i dont smoke or drink or eat lots of red meat. How the fuck is it stage 3? and why is no one doing anything?

Im so god damn fucking angry and someone had the fucking cheek to tell me not to be angry as cancer isnt personal? Oh yeah? it feels fucking personal, Its taking my breast, it may have spread into my lymph nodes and beyond (hell its had 8 months already to have a nice little wander round my body)oh and that its a positive that im so young! REALLLLLY? my career is on hold, im raising 3 kids on benefits as i now cannot work and my partner who was a stay at home dad is having to look after me now and basically do everything for me as i cannot wear a bra for more than 20 minutes at a time and im so god damn tired all the time.

If you have read this so far please check your breasts and report any changes. id hate anyone to have to go through what i am going through.

Pandora, I have to say that is pretty standard re the MDT. You can only be discussed once results are in and most Breast units only have one MDT a week. Ours discusses between 40-60 patients a week.

You can’t have MDTs all through the week as the consultants are busy in clinic and surgery and you have to get all of them in one room together along with the nurses and MDT staff.

If it’s suspected Inflammatory BC, a needle biopsy can cause micro metastasis so it’s avoided.

(Along the exiting needle line)

The NHS is very shit. I have a relative suffering from organ failure. They went to their go repeatedly for months and the GP refused to do everything. Eventually they wound up in the ER where they basically checked for a heart attack and then refused to do anything else. They only ran proper tests when his children threatened to sue. The consultant said he would have been dead in two days if they hadn't begun treatment. If it wasn't for his children he'd be dead.

@Pandoraslastchance How are you doing? I hope they've shifted things along for you? I was misdiagnosed for about 7 months, but when they finally diagnosed me (due to me begging for a biopsy) they started me on chemo 3 days later.

Hope you're ok and that they have a treatment plan in place.

X

I feel absolutely desperate for you. So, so sorry that this is happening. I’m ordinarily an NHS defender - as I presume you must be - but when you’ve done 90% of the work for them, and this happens? Really, really poor. I’m not going to heap on any ‘You got this’ platitudes, but I wish you all the strength in the world.

So sorry for what you're going through. It's horrendous!! My Mum felt unwell for 9 years and kept getting told it was nothing really. First it was anaemia then vitamin deficiency. We pushed her to get a second opinion. She was diagnosed with NET - a rare cancer. It was covering 5 of her internal organs. Took a 9 hour op to remove it, and a long time to recover. I hear more and more of people being fobbed off. I'm a great believer in you know your own body & I was GPs would respect that and take it seriously. My friend's dad was told three days ago he had only weeks to live. The consultant had looked at someone else's results and needlessly caused him & his whole family undue grief. Terrible. Hope you get treatment ASAP.

When I had a lump, I was referred to the breast clinic within a week where they did an examination, scan and aspiration for testing. In my case I was lucky - it was just a milk cyst (they still sent the fluid off for testing, just to be sure). I remember being pleasantly surprised how efficient it all was.

My friend (in a different health trust) wasn't so lucky. She found a lump in her early 30s, was dismissed after a scan, a year later she had swelling in her armpits. The cancer had spread to her lymph system. Five years later her cancer had gone metastatic, and she died before hitting 40.

It shouldn't be such a lottery, and women shouldn't be dismissed when they know that something is wrong. I hope that your story has a much happier ending.

I read your OP and said out loud "Oh, Jeez..." I'm sorry this appalling state of affairs has happened to you.

I'm so sorry that I've got nothing to add that could help. But I wish you strength and courage and the will to survive.

Hi all,
After quoting policies,threatening to rain hell and generally making an absolute pain in the arse of myself I have now got a full body ct scan, armpit ultrasound and bone scan booked for this week with an mri to follow at a later date. Also managed to get an oncology appointment for this week as well.

Sqeaky wheels get the grease!

I am normally an avid defender of the nhs. Hell I've worked for them for 8+. I've done swimathons and bake sales to fund new MRI suites and maternity departments. Sitting here thinking about the amount of extra hours the nhs has had out of me as a staff member.

Does everyone need a specialist to advocate for them? break a bone? well better bring your friend who is an ortho consultant. Cancer?well you need a mate who is an oncologist. It shouldn't be like this. These are professionals with years of training and "experience" and a wealth of knowledge and colleagues to refer to if needed.

I got my arse properly handed to me as a nurse because I didn't do something minor (because I was doing something else more important) so how can a fuck up like this be able to take place?

If only they had done a biopsy of the lump back in January then things could well be different.

If anger cured cancer then if be 100% cured.

I'm so pleased you're finally being taken seriously and incandescent on your behalf that you've had to fight so hard to get the attention you need. I really hope you get treatment really fast and it's 100% effective. Your horror story has haunted me since I first read it.

It's good they are being thorough and are moving quickly now. Most people don't get scans, so they are obviously doing everything you ask!! I demanded scans too. I was terrified while waiting for the results, but felt a million times better when the body scan was clear. Wishing you all the best with your treatment. I was terrified, but it was nowhere near as bad as I feared. Good luck. And big hugs. X

I am shocked that the original lump was not biopsied when you first attended the breast clinic. There is a catalogue of failures here but to me this was the most significant failure. I am sorry you are going through this. You have every right to feel as pissed off as you do. This is truly a disgrace. Wishing you all the luck in the world for your treatment xxxx

Am sorry you've had to fit for this but also good on you! Shy bairns get nowt all of that. I am an employee of the NHS 30+ years but the treatment that I see handed out at times is appalling - the delays, errors and lack of joined up basic thinking is awful.

I love our NHS but it's letting people down - those people who, at their frailest or most sick, need it. and little be to everyone who is battling xx

It’s bloody disgusting how they have handled this. Someone needs their ass serving in a plate for it. Glad you are getting some traction now.
My own tale of woe is a friend who for 18 months has been told by 3 separate hospitals and multiple consultant that the funny nodes on her lungs are not ‘sinister’ and that her severe pain Is bowel related, that in fact she now has terminal asspestos cancer. They didn’t check for it as ‘it’s so rare in women’ incompetent fuckers.

I normally defend the NHS (frontline HCP with many years experience) but seriously it’s a shit show right now. I find myself wondering what the actual fuck is going on?! It’s sheer bloody incompetence and how they can miss stuff like this in the presence of ten million national guidelines about cancer diagnosis is beyond me.

I’m glad you’re finally getting the diagnostics you need, it might be worth considering getting your MP on board as PALS can be a bit “oh lessons will be learned” and then do sod all.

I wish you and your family the best for the future

In my experience PALS are completely useless, an absolute waste of time and money. All they ever manage is a litany of excuses and attempts at justification. To be honest I'd be reporting the GP to the GMC, while the hospital was obviously at fault in the first instance, the GP's neglect and incompetence was ongoing and protracted.

I thought i would update. I had my first round of chemo yesterday and after a faff if the bloods clotting and then having to wait for new ones the chemo went well. I'm so tired but otherwise ok.

I've had a little bit of good news. The cancer is in some of my lymph nodes so I will be having auxiliary clearance when I have my mastectomy at Christmas but it's not spread anywhere else.
The consultant ran everything through an algorithm. 55% chance of making it to 5 years but this didn't include radiation or the second chemo drug which add extra percentages so she is very optimistic and we are looking at 65% chance of getting to 5 years but they will know more after surgery at Christmas.

Bone scan showed I've got osteoartitis in both knees and ankles and my calcium levels are low. Also started on oramorph but hopefully the chemo will reduce the swelling a bit more and the pain will go.

And the consultant has cleared me to swim so after the port settles down I can start swimming to get this weight down.

When I'm feeling a bit more settled I will start to write the massive formal complaint both for the gp and the breast unit for it biopsying this back in Jan. I am still so angry as I've have my whole life rearranged by this. My carer is on hold(yes I still want to go back as a nhs nurse crazy I know) and thankfully I have three beautiful mad daughters so I will have to what and see if a 4th child is on the cards(depends if my ovaries survive) by I am so grateful I had my kids when I was young.

Much love if you are still reading.

Just reading your first post and absolutely raging for you. I’m so so angry on your behalf. Well done for making ground on this awful situation since the diagnosis and keep pushing for everything. You sound like an absolute trooper and I wish you the very best x

Bless you. Really, all the love in the world to you.

I'm a BC survivor, about 3 years ago, and it looks like I was treated by a decent trust re treatment was very quick. I simply can't understand what has happened, or why it happened, in your case. It beggars belief.

iiwy I'd get things down on paper asap. Do it in shifts but get it all down while it's still fresh. ime if you hang about the time never comes when you have the - emotional and physical - energy. So get on with it while you're still relatively fresh [hollow laugh]. Treatment takes it out of you so get on with it now - I had two types of chemo: the former was a breeze for me but the latter absolutely wiped me out but others were fine with it.

ime I was incandescently angry when I got my dx - and things were plain sailing for me. What I'm saying is that ime anger is part of it even without the horror story you've been through. I'm so so sorry love

You've inspired me to get more tests done so already you're doing good xx

Your story has made me shudder. Just by reading your descriptions it sounds so obvious what was going on. So sorry for what has happened and lets hope from now on you get much better treatment from the nhs. I've seem them at their very best and very worst.

I have nothing I can say to fix anything but I'm really glad to read in your update that things are now moving and you are getting treatment. I really feel for you.

I've seen how shit it can be, so hope chemo doesn't knock you too hard. Take care

I'm so sorry op. It's disgusting that it took 9 months for this to be treated. When you feel strength do that complaint. You do sound like you have a very determined spirit. Wishing you much luck. X

This is not normal, it's negligence.
Disgusting.

Stay strong