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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:
missyB1 · 17/08/2018 15:16

I dont know where to start, I'm so bloody sorry you have been treated so appallingly. Im really glad you are standing your ground and demanding what you need, and what you know is right. Its true you shouldnt have to be "in the know" or have a "mate" to get the right treatment. It's so fucking wrong.
My breast cancer was not visible on mammogram, but luckily showed itself on ultrasound to an eagle eyed consultant who biopsied it straight away. My dilemma now is that i no longer trust mammograms, but apparently I'm not entitled to an ultrasound at my yearly follow ups. Well after reading your thread I've decided fuck what they say, I want an ultrasound each year. I lost one breast i dont intend to lose the other, and I dont intend to lose my life either.

Bluelady · 17/08/2018 15:19

Thank you for updating. I've thought about you a lot - so weird when you're a complete stranger - and am so pleased your treatment's begun. I hope this has the best possible outcome. 💐

Cloudhopping · 17/08/2018 15:32

Hi op, your care sounds negligent. I was in a similar position to you in that I had a lump ‘which was probably hormonal’. The specialist said to me that if I was 25 he would have left it but as I was 46 I had a puncture biopsy to investigate further. Mine was hormonal but as I understand it, at 32, these hormonal lumps are not that common, (much more common in your twenties) so surely they should have biopsied in Jan?

I am staggered that with your other developing symptoms, it took so long for diagnosis. Best of luck with your treatment. Thinking of you.

sassypants72 · 17/08/2018 15:36

Oh wow, you've completely been through the mill in the worst way possible!!! I'm amazed at how strong you've stayed, well done, you're truly an inspiration.

Other posts are quite right though, this is the most appalling treatment I have ever heard of, and shouldn't be happening in our supposedly modern NHS. I'm sure you will rein absolute hell on them as soon as you have your strength back. You have every right to be as angry as you are.

I'm so glad you're now starting treatment, sending all my positive vibes your way, nobody deserves what has happened to you.

ThanksThanksThanksThanksThanks

mummyhaschangedhername · 17/08/2018 15:51

So sorry for all you have gone through. Wishing you the best of luck.

LittleMissBananaHammock · 17/08/2018 15:57

Beat wishes to you OP.

Itsear · 17/08/2018 15:59

Sending positive vibes and thanking you for telling this story. Most people trust in the system but it is important to hear voices like yours, doctors are not infallible, sometimes you have to push & question. I think anyone reading your thread will keep it in mind if they are ever in such a situation where they are dismissed and ignored when they should be prioritised.

wink1970 · 17/08/2018 16:00

Glad to hear you have started treatment OP. Best of luck.

One of the problems with BC diagnosis, I gather, is the wrongly-held view that breast pain is rarely a presenting symptom.The presence of pain in the breast means most GPS presume it's NOT cancer and this should be updated or challenged.

The later symptoms such as orange peel and redness should have been spotted though, they are 'red flag' markers no doubt.

80sMum · 17/08/2018 16:14

I've just read this thread for the first time and am absolutely aghast at the appalling bad/negligent way you were treated for 9 months, OP.

Thank god you're finally getting the treatment that you should have had back in January.

The NHS is in serious trouble. I have to say, I don't think it's going to be viable for much longer by the look of things.

LeftRightCentre · 17/08/2018 16:15

No words. What appalling treatment. Wishing you all the best. Flowers

SnuggyBuggy · 17/08/2018 16:38

Thinking of you OP

Applesandoranges1 · 17/08/2018 17:08

Like many PP have said, I would normally defend the NHS but I'm beyond shocked by how your case has been handled.

Your GP sounds like they have relied too heavily on the initial ultrasound (which is absolutely not a definite test and must be done in conjunction with other diagnostic procedures- mainly a fine needle biopsy).

Why on earth did they continue to fob off a young otherwise healthy woman with a growing lump on her breast??

Sadly you now have rounds of chemo and radiation and no doubt the next year will be a very difficult one for you but you will get through it. You sound incredibly strong. I can only hope that you get the answers you deserve for this mighty cock up.

Make sure that you join some of the breast cancer support groups - they are invaluable! Best of luck OP.

Twym886192 · 18/10/2018 00:09

Hello I've just come across this. I hope you are still fighting the cancer off xx much love to you xx

MmeButtox · 18/10/2018 00:46

It feels neither the time nor place to defend the NHS cancer service, BackForGood- this woman is going through a preventable hell that was caused by the service's negligence.

MmeButtox · 18/10/2018 01:06

I'm arsey about this reverence for a flagging system, as a chain of dismissive and ridiculous misdiagnoses have left me crippled in my 30s before appropriate (and obviously much-needed) treatment was finally initiated.

helacells · 18/10/2018 01:37

That's bloody ridiculous why didn't they order a mammogram in January?

WingingItSince1973 · 18/10/2018 02:09

Have just come across your post and hope by now your treatment is well under way and you have better news. Can't believe how they messed up big time. Words fail me xxx

user1484424013 · 18/10/2018 19:21

My husband had been off since November I can pin point it to a specific dat as I gave birth on the living room floor and thought "he's being fucking weird".

We assumed it was a bug. Viral. Infection.

So started going to the doctors. This is a big deal because normally my husband foot could hang off and he would maskin tape it back on.

Anyway saw 5 doctors over 6 months. He was told he was imagining this that and the other. Hayfever. Tonsilitus.

Then after this I said fuck it I'm taking you to the doctors lets put my pregnancy hormans to good use....

So in we go. Working 2 mins the doctor said I think its cancer. 2 week wait for appointment for them to say. Were sure it's cancer. Another 2 week wait for mri. Ct. Biopsy. Keep him in 12 days and send him home.

Just by chance I am reading the discharge papers to make a copy for go and it tells me my husband has cancer confirmed. And I had to be the one to tell him they had left it so long we assumed all was ok.

Call the hospital and speak to the mcmillan nurse and she said well it's only stage 2. We will be in touch (July 9th at this point) in September to discuss treatment.

Me kicking off move him to another hospital far far far away from these twats.

Hey sorry to say it's not stage 2 it's advanced stage cancer the worst fucking stage . You need radiotherapy and chemotherapy. Oh and by the way it took those other fucker so long to find it (,actual visual cancer hence this being the biggest fuck up ever) that this is your one and only shot.... So had to tell my husband he had cancer and also they ignored him. Treated him like shit. All this with 2 under 10 and a new baby.

I don't know your pain or fear in having cancer but i know the sheer agony and horrendous feelings of being scared and heart broken.

It's no help to you but your not alone in being fucked over by the nhs. ( being honest where we travel the long as journey to a different city is nhsbut treated like private care) and I will offer my thoughts to you and your family xx

H

Pandoraslastchance · 08/02/2019 13:44

I thought I would update the thread. I've had my mastectomy in January and I'm doing well.

Just back from my oncologist who has given me the all clear. The breast that was removed had 99% dead cancer. They also took 15 lymph nodes which have all come back clear.

I'm cancer free. Such a long few months and I've still got radiation therapy and some more chemo to go but the cancer is dead and gone. It's cost me my breast but I'm alive and cancer free.

OP posts:
Heronymous · 08/02/2019 13:46

YANBU that is truly shocking. I’m so, so sorry.

Heronymous · 08/02/2019 13:47

Oh god sorry I am an idiot! But YAY! So so happy for you Flowers

SandunesAndRainclouds · 08/02/2019 13:55

I’ve just RTFT and very happy to see a good outcome for you.

I’m another Nurse who has had to fight, push, fight more - it was for DD though not myself. That alone is draining / exhausting so I can’t imagine how you’ve done all that while your body is carrying cancer.

You’re amazing Flowers

Newsername · 08/02/2019 13:55

What a shocking story. I’m so glad you’ve made it through and I wish you a beautiful bright future.

Ljlsmum · 08/02/2019 13:58

Hi Pandoraslastchance- Just read your OP and update but I am so shocked that it took from August to January before you got your mastectomy! Thought it would be weeks at most! So glad your results came back clear in the nodes. What did PALS say and the service as a whole? I hope they have made steps to prevent this kind of mess happening again. Xx

MaggieAndHopey · 08/02/2019 14:08

So glad to hear this! I remember your thread.

I've waited over two months for an 'urgent' referral to a breast clinic that my GP made at the beginning of December. The appointment is next week, finally, after chasing and chasing I've been offered a cancellation. Unfortunately there's no two week standard for urgent referrals with suspicion of cancer in Scotland, but two months does rather take the piss. Hopefully all will be OK but it's been a shit time so far.

I'm so sorry you were put through such an ordeal but absolutely delighted you have made it through. Thank you for updating us.