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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

AIBU to be angry at the nhs cancer service

185 replies

Pandoraslastchance · 02/08/2018 19:50

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.

OP posts:
Melamin · 02/08/2018 20:44

I don't think the NHS works very well at diagnosing cancer outside screening programmes. I was surprised how long it took to put together a team for MIL to even have an appointment to discuss anything, after her diagnosis with pancreatic cancer (which she pretty well diagnosed herself).

Definitely try pals, McMillan, district nurses or anyone who can listen and do something.
Flowers

ladydickisathingapparently · 02/08/2018 20:44

I agree - stay angry. Direct that anger wisely though.

My friend who was diagnosed with stage 2 BC recently was done and dusted with radiotherapy within 8 weeks of diagnosis. This is shocking.

CherryPavlova · 02/08/2018 20:46

Alternatively phone the Director of Nursing, Medical Director and CEO (or email them) If you pm me with the name of the trust I’ll work out the email addresses you need to use.

LakieLady · 02/08/2018 20:46

So sorry OP, and incandescent with rage on your behalf.

Eight years ago, almost to the day, I went to the GP with a tiny lump, smaller than a pea. Two weeks later I was at the breast clinic where I had a mammogram and a needle biopsy, 10 days later I had a phone call saying all fine, it's a sebaceous cyst.

I thought that was standard.Your treatment has been appalling.

I'm willing you the best, and quickest, treatment possible from here on in. Flowers

necromumda · 02/08/2018 20:46

I am actually really anxious about ever getting sick in this country.

glitterbiscuits · 02/08/2018 20:48

This shouldn't happen in Britain today. Our NHS should be the best medical service ever. The envy of the World
I'm sorry OP. I'm angry for you too. I hope things improve here on in.ThanksThanks

biscoffbaby · 02/08/2018 20:49

Sorry to hear all of this OP.

For those of you slagging off the gp, the gp referred as a suspected cancer referral in January, can't see how they are the ones in the wrong here

BewareOfDragons · 02/08/2018 20:51

The GP fobbed her off for months. Months! After being referred, and the lump getting worse ... clearly all was not well.

user546425732 · 02/08/2018 20:53

Jesus christ, that's disgusting.
I'm so sorry OP. Get down there and be bloody furious with them.
And talk to the Daily Mail if you can face it.

Bluelady · 02/08/2018 20:53

The GP was the pits. Read the OP properly.

Mouikey · 02/08/2018 20:56

I am so angry for you and so sad. I can't believe this still happens. This happened to my Aunt 20 years ago... she could have written your post. Sadly it didn't end well.

Drugs and treatment regimes have improved since then and I wish you all the best on your journey.

musketeersmama · 02/08/2018 20:59

My experience was like yours Lakielady & I too thought that was standard. Appalled for you OP. I'm so sorry and hope you get the treatment you need ASAP. Flowers

Tailfeather · 02/08/2018 21:00

Oh @Pandoraslastchance, I have been through the exact same thing. I was misdiagnosed for months and months and given various antibiotics and only diagnosed when I burst into tears and begged for a biopsy. I was 33 and also stage 3.

I'm still angry about it,

Sending lots of understanding hugs. X

yerbutnobut · 02/08/2018 21:01

Really sorry to hear you are going through this and how its being handled, you have every right to be angry.
Just read your update on it being grade 3 as opposed to stage 3. Grade 3 means that the cells are most changed (goes from grade 1 to 3), I was grade 3 but stage 2, stage refers to how advanced it is, size of tumour and lymph node involvement determine this.
I had a grade 3 invasive ductal carcinoma with only sentinel node positive, I was 34.
Push for answers, its your body.
Keeping everything crossed for you OP.

NotBuiltForThisWorld · 02/08/2018 21:02

I'd be furious too. For everything. I agree you've been let down. Outcomes are increasingly good for cancers even a nasty invasive ones. My big sis had two grade 3s at age 36 and made a full recovery. I know that's not necessarily comforting right now. Concentrate on the treatment regime getting rid of the cancer and recouperating.

LtJudyHopps · 02/08/2018 21:02

Please just keep fighting and pushing for appointments, I wish my mum had but we were told it wasn’t aggressive and naively trusted the experts! Don’t let them take no for an answer, keep hold of the anger to fight with!

ragged · 02/08/2018 21:03

In April, 2nd visit, Should the GP have referred OP back to the breast clinic for the same lump again? Is that the protocol to follow?

Sevendown · 02/08/2018 21:05

I hope you get a big compensation pay out op.

Cyw2018 · 02/08/2018 21:06

Haven't RTFT (sorry), I know it must be really hard financially but is there any way you could pay for a private consultant appointment to jump the initial queue, it is quite a common thing to do in oncology, and then carry on with NHS treatment from there. Maybe a family member will gift you the money, I'm sure they will have offered to help in "any way they can", maybe this is it.

itsalldyingout · 02/08/2018 21:08

So, so sorry you're going through this.

Use your anger to fuel you through this awful time then, when you're recovered and are strong enough, get answers - for yourself and all the other women that this has happened to.

It should NEVER happen in this day and age. Again, I'm so sorry it's happened to you.

Sunnymeg · 02/08/2018 21:10

I had breast cancer ten years ago and ended up suing the NHS when part of my treatment went wrong through their incompetency. We had legal cover with our home insurance and used them to deal with it, knowing that, that way they would cover the costs and we wouldn't be left with a hug legal bill if we didn't win. Some of the amounts they quote for medical specialists are truly frightening. In no way am I trying to put you off legal action, I'm just saying that this may be a way to do it which will be less stressful for you.

Doubtless the GP will claim that they didn't consider cancer due to your age, breast feeding status etc etc. When I was having treatment I met a 17 year old girl with breast cancer, who thankfully had a GP who referred her just in case.Which is, what should have happened to you.

If you have a designated breast care nurse, I would ask why the delay in seeing the oncologist. Occasionally they are waiting for more test results so they have a complete picture of what is going on. They normally have multi discipline meetings where a whole team of specialists study the results and provide their opinion on what treatments should be and they might be waiting for yours to be looked at
They have told you, you will be having chemo, but they have to decide on which chemo, how many infusions, gap between infusions and other variables. Hopefully the reason for the delay may be something as straightforward as this. If you have had or are due to have surgery prior to chemo it is not usual to see the oncologist until surgery has happened and you are in the recovery period. Chemo will bring the recovery period to a stop, so it is vital, that your body has healed from any operation and that, your scars etc are looking good before chemo starts.

Definitely contact your breast cancer nurse. I rang up mine up, with totally daft questions, when I think about it now, but that, is, what they, are there for.

ilovegin112 · 02/08/2018 21:14

My mums go sent her to the supposedly one stop shop ( when she found a lump) it wasn’t it was a clinic, it was a few weeks before they realised it was cancer luckily stage 2, she had chemo (chemo nurses were brilliant) sent to a ward with d&v when she got sepsis, this was after gp put her on antibiotics then cancer doctor took her of them, the cancer nurses could not have cared less, never answered calls or replied to messages as soon as treatment finished she’s never heard a word from them, luckily her gp was brilliant, my mum was a nurse for over 50 yrs she would have treated anyone like she was treated

Op complain and complain, women on either side of the usual shouldn’t have to beg to be checked and treated

Cyw2018 · 02/08/2018 21:14

i will be honest and say that when the consultant said that i was lucky i very nearly floored the bastard.

Totally ridiculous thing for the consultant to say to you.

My dad had an aggressive brain tumour, apparently at 68 he had the poorest prognosis (6-15months), whereas a 40 year old with the same type of tumour would have a much better prognosis (2-4 years). I know which one I would prefer to be. Statistics need to be interpreted carefully especially when peoples emotional wellbeing is at stake!

ivykaty44 · 02/08/2018 21:15

I can understand your anger, my mother had 6 month of two and fro with bloating UTI and eventually the go said do you want the good news or bad news first, the good news is we know what it is, the bad news it’s ovarian cancer

Please tell the go this is shit
Please tell the piercing medic to never do that again

itbemay · 02/08/2018 21:17

The disparity in service is appalling. I found a lump, referred 2ww , appointment with ing 10 days, mammogram and uss straight away revealed cyst. Happier ending for me but why was you not offered this? I would be angry and ask your GP why the delay etc, sending you hugs