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.

You have every right the be angry and I agree that you should make a formal complaint.

So sorry that this is happening 💐

Wait until you meet the Mcmillan Nurses, OP. What do they actually DO?

That is shocking.

I'm so sorry, OP.

I would be going after the GP and the initial referral service for not doing a needle biopsy in January, and fobbing you off for months. They have taken a chance with your life, with your children's mother's life... unforgiveable.

So sorry you are going through this. I hear stories like yours all the time from clients who come to my clinics. The most recent one is the cousin of a close frind who has been going to the GP for months with vulval swelling and pain. has now been diagnosed with stage 3 vulval cancer. It's shocking . We have it drilled into us to check our bodies but then when we raise concerns no action is take. Hope you manage to get sorted.

My poor boob has been seen by
-4 different GP's (2 fairly junior, 1 middle range and 1 senior)
-3 breast clinic doctors
-2 sonographers
-3 breast clinic nurses

and a partridge in the pear tree!
Shapely-my partner who is the least medically trained person in the world kept saying 'your tit is getting worse. why isnt it getting better and why arent they doing more investigations?

RedAnnie- its so thoughtless to be told 'oh well you are young' yeah thanks ive got what 50 years of staring at what used to be my breast and remembering the absolute hell the nhs put me through. my heart goes to your sister-she was truly robbed!! i will be honest and say that when the consultant said that i was lucky i very nearly floored the bastard.

Necro- i selfishly hoped that i would be one of the very rare ones but if you know of two people then i am fucking shocked and here comes the anger again!

Regarding it being an abcess-my partner had an arse abcess(for want of a better word) he went to the gp at 9am and was in a&e by 11 and on the ward being prepped for incision and drainage by 4 pm.

Macmillan nurses are there to support and guide you through treatment. They do amazing work for people in very scary situations.

I'm so sorry you've had all this OP. It's so massively cruel that your concerns were ignored. Hound PALS (not that you should have to be fighting at this point) and call the Macmillan support line as they can support you and advise you on all sorts of things, including money. They have grants and a benefits team to make sure you're getting everything you should.

OP - I'm so sorry. You didn't deserve this and you should be livid.

Sadly all too common. My mum had stage 2 cancer which was treated and then went back to her GP because she was having headaches. Despite the GP knowing her history she told my mum to get a head message. Three times. My mum was right, she did have a brain tumor and she sadly died 3months later. The NHS are unbelievably shit sometimes.

We have had very little support or guidance from our McMilllan Nurse but can appreciate this is one experience and others may be very good.

You’re not unreasonable, I’m angry with you! My mum (47) was diagnosed last September with stage 2. After faffing about by the consultant who suggested mastectomy, then pushed hormone treatment, the tumour began to shrink and then reversed. We waited 8 weeks to see the plastic surgeon to discuss surgery. By the time we got back to see the consultant after this and other pre-op stuff, it became apparent it had spread to her bones. She now has secondary breast cancer and I’m so angry.

Just wanted to share, sorry to hijack. I’m so sorry this is happening to you and god only knows what would have happened to some poor other woman who didn’t push the way you did. It’s so shitty but I hope your treatment goes well.

I'm so sorry to hear this OP, this sounds horrifically mismanaged.

I really hope they prioritise your treatment, please make a nuisance so you are hard to ignore.

Again, I'm so sorry that you are in this position.

I'm sorry it all sounds awful.

Did you get given a number for a breast care nurse? If so call them. They may be able to expedite the oncology appt. Or if not while I appreciate you are angry with your GP it might be worth seeing/speaking to a GP at your surgery tomorrow because it's possible they could attempt to get your oncology appointment brought forward.

Going forward, you sound like you have grounds to complain about the breast clinic and GP management. As you will still need to have a GP you might want to change practices.

And you already know about PALS...

Best wishes.

This is horrendous. You have a right to be angry, obviously. I would be raising hell. Not that that seems to have helped, I understand.

You've been let down so incredibly. I'm so sorry.

So sorry OP that's utterly shite.
Is there any chance your family could pay for you to go private? A loan, critical illness cover, anything? I'd pay for a family member in this situation if I could.
You should be being admitted and starting chemo on Monday. In fact I would present at A and E and refuse to leave. Tell them the pain is such that you can't stay at home, anything, but don't leave till they get you a bed. Two weeks is a long time.
They should give more of a shit than this. It's disgusting.
My friend's a nurse on an oncology ward. She was so short staffed it was between hooking up someone's chemo or replacing a palliative care patient's syringe driver. She chose the chemo, as it was necessary due to specific times between drips. She was shouted at in front of the entire ward for failing a dying patient, when all she had done was try to keep the living one living.
I wish you every health OP. Really.

That's really really bad. I hope to god you get treatment sorted fast and get rid of it.

This is horrendous op I’m sorry you are going through this.

I would absolutely get hold of somebody tomorrow be it a breast care nurse or GP and demand an oncology appointment ASAP. Do not leave until they give you one. Ring PALS or go and see them if you need to. It really is unacceptable.

Out of interest did you have a mammogram on your first attendance to the breast clinic?

right: you need to find a medical negligence lawyer you know fighting through the complaint system in NHS is an abomination - unless you have been through this system & tried to make a serious complaint you have no idea how you get treated it adds to the trauma. You need to look on the law society website & find someone who does medical negligence - what area of the country are you in? www.teeslaw.com/medical-negligence I hope mumsnet don't mind me putting this up - but I would really really recommend this company -I don't advocate medical negligence for anything but serious incidence & this is one

Check your life insurance if you have one. Usually compulsory to have one if you have mortgage.

What I meant re insurance is it might help you get treatment sooner.

it's good that you are angry

Angry and demanding patients get better service (fact)

It's totally wrong what has happened so far and you have every sympathy from me

But please do stay angry. Your anger will help you to survive

That is absolutely shocking, so angry on your behalf. I can't understand what the hell they were thinking?!

If you need any advice on chemo/radiotherapy or anything else cancer related then please feel free to pop over onto this thread. There's a few ladies on there who are having treatment for breast cancer who'll be happy to help with any questions you have

This is terrible op. I’m so sorry for you. I know of at least 3 similar stories. The NHS is not good when it comes to cancer.

Bumble-i am so sorry about your mum.

LtJudy- this is my fear-by the time they pull their fucking fingers out their arses it will have spread- no need to apologize.

Halloumi- i got a card with her number on and she is a chocolate teapot. lovely but um useless. i dont want a labrador, i want, no i need, a staffy! Someone who isnt going to accept that there are no appoinments. someone who will fight with me. Ive spoken to another gp at my surgery (an older lady one) who is going to help me with this (even going to call me on her days off)

Nike-thats horrific but sadly as a nurse i believe it as ive had similar when i was working.

Sorry this is happening to you OP. I can’t believe that they push you to check for lumps, and symptoms and when you go there with lumps and symptoms they make you jump through hoops!

To add balance and stop everyone worrying all breast care is like yours, I can’t fault the service I had. You have been treated badly with people not adhering to NiCE guidance.

I too would ring and speak to oncology secretary. They manage the oncology appointments and should be able to bring forward your appointment. As a back up phone the breast care nurse as well. Do not give up until someone listens. The only time I had an issue was a locum GP failing to get me an appointment when I found another lump on the day I was starting chemo. I phoned myself and was seen within half an hour. You shouldn’t have gone through this.
Then hang on to the fact that most people nowadays live with breast cancer. Outcomes are generally good. Treatment isn’t nice but it is manageable. You only feel grim for a couple of days each cycle usually. There are lots of things to manage side effects.
Good luck.

Fuck sake. I’m sure women get fobbed off more and especially younger ones. I did for other, less serious thankfully, reasons. Came home to my invite to investigate a lump, I’m 35 and breastfed a year for each child, in part hoping it was some insurance against this. I can’t believe they missed it and didn’t test you enough at the first opportunity.

My mum and auntie were diagnosed and successfully treated last year. The treatments are better and so many women come out ok. But do complain to everyone involved as this should never have happened. Also reach out for support, Maggies Centres are all over the UK as well as more local individual charities. Have a google. They can help you cope and signpost other support, all for free. They are utterly brilliant people. And breast cancer is sadly very common so they are total experts in what you are going through.