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.

Please contact your MP. Mine got me an appointment when all else failed.

I am very sorry for the appalling way you have been treated.

My best friend’s mother was diagnosed with triple negative breast cancer. This type of cancer has a strong genetic component so my friend went to her GP to ask for a mammogram. He refused, told her it was unnecessary. Two years later my friend died from triple negative breast cancer. Her mother beat it, there is hope, but I am so angry at the GP who let my friend down.

I can help you - genuinely. I took on the NHS once and won. It was not an easy fight but I did win it. PM me if you think I can help.

OP - I am so sorry you are going through this and I have not yet read the whole thread - but I did want to jump in as I was diagnosed with BC in Feb and have been going through treatments.

One thing I want to call out is that grade 3 is NOT the same as Stage 3 BC. For me they told me they could not Stage the cancer till after my surgery.

I hope maybe that goes a little way to easing your understandable worry.

BC Sucks and its all horrible everything about it is horrible.

OP I’m so sorry that you’re going through this. You definitely need everyone involved to be looking at their processes and raising a significant event if needs be. I think @theredjellybean is right, the GP was probably falsely reassured by your breast clinic review, but I’d ask them why you weren’t referred back when you kept going back to the GP as things weren’t improving. I really hope you get seen ASAP and treatment started.

So sorry op I really hope you get seen soon. The same thing happened to my grandma she was fobbed off by the doctors for months and months every time she was sent home with antibiotics and told it was a water infection by the time they decided to investigate it it had turned in to stage 4 bladder cancer a year of endless treatment and operations she still has cancer in her lymph nodes by her bladder but it would never of got that bad if they had just listened to her instead of fobbing her off constantly.

I'm so sorry to hear about this. Definitely consider getting lawyered up.

We are having a similar saga with my DM at the moment, albeit a different type of cancer. We've known it was cancer since June, and exactly what type since early July. She still hasn't started treatment because they keep changing their minds about what to give her. Then they made a decision earlier in the week and backtracked on it within two hours and are now muttering about CT scans to see how much it's grown. A cynic would think they were putting off treating it until there was no point... (And yes, we are pushing, and yes, we have made it clear it's not on.) But basically, cancer services and diagnosis procedures are very variable depending on area, type of cancer and doctor. My DM is definitely regretting not having private insurance.

I'm sure you could sue on a no win no fee basis. Look into it, but make sure you go to specialist solicitors, preferably with experience of breast cancer cases.

The no--win-no-fee lot take a large %. I know a personal injury lawyer that's very good at this sort of case and normally manages to get all or at least most of his fee back from the otherside, thereby getting more of the damages for the claimant. Happy to provide a contact if it would be helpful.

This is disgusting you hear all this "check for signs of cancer and see a GP quickly" advice and see all these TV ads but somethings not right you get disregarded even without antibiotics!

I have nothing actually useful to say OP just that I'm really sorry x
I hope your treatment is swift too, have you thought about complaining about your GP?

I'm so sorry Op.
That's all absolute shit.
I hope you manage to get seen sooner

to give you some
Hope. I’m 33, have triple negative breast cancer and am
Just coming through the other side of treatment. Have been through chemo and double mastectomy. Results are surprisingly good!

PM me now, or later down the line. Wishing you all the best of luck.

My sister was told her breast cancer was mastitis for a good year before they realised it was grade 3 cancer. This was 6 years ago and she’s fine too. Xxx

I have to say it's surprisingly common in us younger folk. There's a private Facebook group for women who were diagnosed under the age of 45. Most are in their 30s, but many in their 20s and I think the youngest member is 18. So many of us were misdiagnosed for ages as we were 'too young'. Some have tried the suing route, but haven't got very far unfortunately. PM me if you'd like details to come and join us. We're a very supportive bunch. X

It’s also very common in ladies over 70, some of whom are ignored by ignorant doctors for being too old

Hi,thank you for your kind messages of support.

I have a small piece of good news. My appointment has been bought forward to early next week and they have now listened to me and are actually booking me the full body MRI and bone scan that is recommended.

Shame I had to email the chief executive and lead of departments and head of nursing. Shame I had to shout and rant down the phone like a crazy woman. Shame i had to spend my precious time researching guidelines,policies and procedures and shame I had to threaten to go to the newspapers and sue everyone listed on my medical notes.

Well done you for making a noise. You shouldn't have had to do it but at least it's got you seem quicker.
Bless you. Am thinking of you. I've had cancer and had another cancer scare recently. I know how terrifying it is.

I'm sorry this happened to you OP. The same kinds of things happened to my parents. I HATE the NHS with a burning passion. It is a joke. And the fanatical devotion it inspires means we will never have a decent health are system in this country. Because it is "free" it is lowest common denominator treatment and we're supposed to be grateful for it.

Well done on fighting your case and I pray things go well for you.

Op I am so sorry I am glad to hear you’ve made some headway with getting the treatment you are entitled to, it’s shocking that you had to go through all that to get it. All the people who have been in charge of your care have let you down, you are entitled to be angry, I am angry just reading it. I hope your treatment is now quick and successful, you will be in my thoughts

Well done OP. You shouldn’t have had to do that but at least you are now being seen earlier. They have fobbed you off long enough.

OP, I work in the Breast unit and this is 100% substandard service.

Anyone who comes in who may have inflammatory breast cancer is sped through the process.

2 week initial appt to Breast clinic. Ultrasound/mammogram/biopsy. Results ASAP. Appt with consultant Breast surgeon. Results discussed at MDT the next week. Plan drawn up and appointment with patient the next day. Appt for bone and CT scans the next week. Maximum of 2 weeks to see oncologist. Either primary chemo or surgery within a few weeks.

The only possible delay would be that we are short staffed with radiographers atm which is holding things up slightly.

God only knows what’s gone wrong with your Breast unit.

I can highly recommend calling your consultants secretary though. They can often get you an earlier appt.

I can recommend making a complaint with PALS. As soon as you do it will be sent to the Breast unit manager and believe me everyone in the unit will know your name and not to fuck around.

What hospital is this if you don’t mind saying?

You have been badly let down - it is utterly bizarre as they usually play on the safe side with breast problems. There is no rhyme nor reason to this; and certainly no excuse for this long wait for treatment now that the diagnosis is made. I would not sit back and wait for this appointment - I would be pressing for an earlier appointment - loudly and clearly.

You are right to be angry - you are right to complain. The more you complain, the more they will have top listen and hopefully learn the lessons.

I am sorry that your life has taken this difficult turn, and wish you all strength to deal with it, and all power to your elbow in taking on the system - not what you need to have to do right now.

In defence of the GP (slightly). He did refer to the Breast clinic who are the experts. This is where it all falls down. I’ve seen our consultants giving GPs short shrift when they keep referring the same patients back when they’ve been told there is nothing wrong that the GP cant deal with.

This may be the case here. But after the ABs didn’t work and the lump got bigger they should have definitely referred back.

I am so shocked by this given that practically every symptom you have described is what they tell you to look out for.

My granny was told by her gp for months she had an irritable bowel even though (TMI) she was destroying her sofa cushions with blood everytime she passed wind. My dm paid for her to go private where she was diagnosed with bowel cancer. She died a year later. Her sil tore the Dr a new one when she bumped into him in town and asked how my granny was after she had died.

Hoping things will move at a quicker pace for you now op with appointments. You have every right to be angry you have been let down so badly.

Another fuck up was that because my biopsy was taken on a Thursday the slides would not be ready to discuss at the mdt which takes place on a Friday so I was a week behind there already.

Regarding the antibiotics and suspected abscess-i thought protocol would have been that they needed a needle biopsy to show what antibiotics it was sensitive to. One of the big campaigns is inappropriate antibiotic prescribing.

I am slowly putting together an email of epic size to go to pals.

I'm just so tired all the time. I've just awoken from a 2 hour nap.