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.

OP I’m so sorry, that’s fucking appalling.

I recently needed an urgent two week referral for suspected skin cancer after having had skin cancer previously in 2012. There wasn’t a single clinic within 30 miles that had an appointment within 2 weeks. In fact there were NO bookable appointments.

I went private on a credit card and had the op within 3 days.

The standard of NHS care varies so much and it’s shit. Complain. It might make them think more carefully before it happens to anyone else.

Wishing you all the best for your recovery.

I am so sorry you are going through this OP.

You’ve a total right to be f*** off.

I’ve nothing to say that will make it better other than I totally empathise with you and wish you a speedy recovery. Let those around you support and look after you. You’ve got to get well for your babies .

Take Care lovely lady!

OP. I don't generally post on mumsnet but wanted to respond to your thread. I was diagnosed with stage 3 grade 3 inflammatory breast cancer in May. I am a similar age to you.

I had my first chemotherapy treatment 2 days after receiving biopsy results. I had an MRI and CT within a week. My nurses said they were willing to escalate my need for an appointment as high up the chain-of-command as necessary in order to get me my treatment within the week. This was all on the NHS.

I don't want to scare you, you will in all liklihood be fine, but your drs should be taking your diagnosis very seriously. You have plenty if time to make a complaint about the delay in your diagnosis (which sounds awful) but as a first priority I would try to find out who is in charge of scheduling (ask a breast cancer nurse?) and tell them you want the first cancellation slot available and that you will call up every day to check for availability. A private appointment, as others have suggested, could be an option.

I hope you don't mind me offering this advice based on my experience. We are all different, of course, and this may not apply to you. Wishing you all the best for your recovery.

I can understand your anger, however you were referred to the breast clinic appropriately by the gp at the beginning.
The fault lies originally with the consultant who obviously saw a lump on scan and mammogram but didn't biopsy it.. Just told u it looked hormonal.
I don't know a breast surgeon who'd take that risk tbh...
That is were your complaint should lie.
The gp no doubt got a letter back saying hormonal lump and when it became red and tender made what is actually a sensible diagnosis of an abscess in a hormonal cyst, x after all why should the gp not think the breast surgeon got it right.
There is certainly some question over why it was then allowed to continue getting worse while on antibiotics without your GP sending you back to the breast clinic sooner... How often did you go and tell or show them? If it was frequently and as soon as you had finished the antibiotics then the GPS definitely need to explain their rationale.
Thirdly wtaf.. Five weeks since a diagnosis and you haven't started treatment... That's appalling and that along with my first point about lack of original biopsy is the basis of a very strongly worded complaint, send it to the clinical director of surgery at the hospital and copy in your GP, the medical director and ceo of the hospital and your mp.

This makes me so fucking angry that this is still happening. I would still have a father if his fucking GP had done his bloody job. It’s all very well having all these campaigns saying see your gp immediately if you have blood in stools/ persistent cough/ breast lump but it’s completely pointless if GP just then says ‘nah, it’s probably nothing. Come back in a few weeks’.

Pandora I am livid at the treatment - or lack thereof - you have been given to date. It is horrendous in this day and age, even with your training and knowledge guiding you, that you have been fobbed off with crappy diagnoses.

Be propelled by all of our anger for you, with you. Make noise, lots of noise - get newspapers and TB involved if need be - and make them get you in treatment now. I wish there was something concrete the power of MN could offer. Don't know what it is right now.

complain loudly all over go to papers ,pal service at hospital,your gp practice manager get yourself heard take legal action,dont worry you have every right to be bloody angry. my best friend had breast cancer last year she had amazing service with our gp,is your gp a man or woman not that that matters i always thought women got refurred straight away to breast clinic and had lots of tests to rule anything out,i know at least 3 ladies with lumps and got refurred and cleared in a week at most ,GOOD LUCK YOU WILL GET THROUGH THIS XX

I'm so sorry to hear this Pandora. It's shocking, particularly with breast cancer as so much money as been poured into it at the expense of other things.

Please do complain.

I had a similar thing happen to me, with a different sort of cancer and it had spread to my liver by the time they realised I wasn't moaning about nothing. Ten years later I am alive and kicking. I hope so much you can join my posse of long term survivors.

I'm so sorry you're going through this. It is fucking disgraceful. Sadly, I'm not surprised, this is how younger women get treated.

I was 27 when I got my breast cancer diagnosis. I'm NED, but still a member of an online support group for younger women - please come and join us. It's much, much more than what it sounds, and you'll get valuable advice.

Search for Younger Breast Cancer Network UK on Facebook and send a PM to the page asking to be added. They'll put you in the appropriate closed groups.

Op I feel for you; when you go through this it isn't just the cancer that is traumatic - its because it should not have got this far. we didn't have to pay solicitor we did have to pay for legal expert - but the solicitor we got had a real interest & understanding & empathy & good medical knowledge (cancer she fought tooth & nail for us - this has caused you anguish & pain but it also costs financially) no win no fee (they get it off the other party) A solicitor will explain and analyse your case.

You may be wondering why my post mentions having
an op and then chemo, when you have been told chemo before the op. My friend was told this and then after the multi discipline meeting they decided to operate first.

I have been through having a mastectomy, chemo and radiotherapy. It is all perfectly do able. Use your anger at the NHS as something positive to keep you fighting.

I'd strongly suggest talking to solicitors specialising in clinical negligence about this. Apart from anything else, their lawyers may be able to persuade them to inject a sense of urgency into treating you, on the basis that your potential damages are increasing every day they leave this alone.

Cherry-i have the email address for the ceo, deputy ceo, matrons, head of surgical and medical departments, head and deputy of nursing, the cancer matron and the pals department. Ive worked with most of them. it will take me a few days but by god they will feel the wrath!

yerbut- sorry it is grade 3 (with unknown lymph involvement) they havent said the size or stage as they havent actually seen/felt or measured the fucker yet. Im a 42G so you can visualise how big this fucker is.

Sunny-the delay is that there are no appointments-ive had zero investigations other than the punch biopsy. no bloods, not been weighed,

my breast care nurse keeps saying 'youll be ok, youre young' and 'we are doing everything by the book and everyone has done everything they should have done'

unfortunately i dont have home insurance or health insurance- i was made unemployed over a year ago. my 'family' is my 83 year old grandfather who is seriously ill himself, my partner and our 14yo,5yo and 3yo. no friends. we are broke, not a pot to piss in.

Oh OP, I'm so angry on your behalf. My poor mum died after the gp continued to fail to diagnose late stage stomach cancer and fobbing her off with anti acids for months.

I feel so angry four years later and reading your story has struck a cord with me. I very much hope you can get the treatment you need very soon, keep fighting and make sure you stamp your feet and demand action.

And btw to a previous poster, my experiences with Macmillan nurses was amazing, brilliant women who helped the whole family throughout the illnesses and bereavement. Worth their weight in gold

This is appalling, I'm so sorry.

It's exactly the sort of shit service we had in oncology about 30 years ago.

If you possibly, possibly can, go private at least for scans.

OP, I am so sorry about your diagnosis.

I would recommend you google and get in touch with an awesome lady called Heidi Loughlin. Heidi was diagnosed with IBC at the same age as you and tragically she was pregnant at the time of diagnosis and her baby died after being delivered at 28 weeks. She was also dicked about by medical professionals who told her she had mastitis- I think it took her around 7 months for a diagnosis. She is really awesome- she lives in Bristol and has done lots of interviews on local news and I am sure she would love to hear from others in the same boat. She blogs under the name Storm In a Tit Cup and is on twitter and FB.

It's a really rare and horrible form of cancer and the age comment is ridiculous from the doctor. That's not how BC in younger women works at all- might be true for flu but not helpful to say to someone with IBC.

Best of luck and yes, do look into suing the fuckers. They should have done a biopsy straight off.

I also believe that the nature of IBC means that it is always at stage 3 at least when diagnosed.
www.cancer.org/cancer/breast-cancer/understanding-a-breast-cancer-diagnosis/types-of-breast-cancer/inflammatory-breast-cancer.html

Please go back and put serious pressure on them- they cannot fob you off like this. It is urgent that your treatment starts immediately due to the fact that it is already locally advanced. Hopefully if you make some noises about legal action they will get their arses into gear.

Pandora - so sorry to hear that they have let you down so badly. Please fight for earlier appointments and treatment, it's shocking you've been backwards and forwards for this length of time without any real action having been taken. I still wonder now whether my MiL would have died as soon if her GP had been a bit more diligent - when I went to my Dr with similar symptoms he mentioned gallstones (and sent me for a scan very quickly) as the most likely option and ovarian cancer as an option (which MiL had just died from) (turned out to be gluten intolerance).

Shit. What a fucking shambles op. I wish you all the very best, I really do.

what Barbarian said.

Complaints can wait, get on the case with seeing a consultant and getting treatment started asap, if only because you'll feel better for "doing" something.

That said, to reassure you - we were told (in relation to a different cancer) a few weeks is unlikely to make much difference to the effectiveness of the chemo as you either respond or don't. From my limited knowledge BC is one of the more chemo-responsive cancers.

I am really, really sorry this has happened to you.

Something almost exactly the same happened to me. Similar age, same amount of arsing around by the NHS. I think I probably had the cancer when I was pregnant, you can see it on the photos I took when I was trying to breastfeed my baby.

I was told in no uncertain terms that I did not have cancer-luckily another doctor looked at my scan...My child was 9 months old when I had my double mastectomy and a year to the day when I started the radiotherapy. Child is 10...

I bloody fought the hospital who changed their clinical procedures because of what happened to me. I see you have done a timeline. That is good and useful. I kept one, went back over everything. It made me feel more in control and I think it was useful in the complaint and hospital's evaluation of what happened.

Macmillan were amazing.

The hospital were amazing in the end-I felt like I got good treatment as they were so sorry about messing me about for so long. I did follow the complaints procedure, for my child really, I thought I was going to die due to their mistakes and I wanted to show DC that I had tried everything possible to change things for others.

I am sorry. It's not right and it's not fair and it's a massive arse.

DOn't bloody let them start carving chunks out of your back to do a reconstruction. This is likely to completely mess with your ability to lift, carry, do anything much. I've got saline expandable implants, I'll show you mine if I can work out how to do it privately!

All the very, very, best.

Such a terrible tale.
I’m so,sorry you’ve had to go through this...
Sending my positive thoughts and a hug x

Hi OP.

Sorry to hear about all you are going through. The last thing you need is lack of confidence in those that should be caring for and treating you.

When you quoted the letter earlier you said is says grade 3 rather than stage 3. It is likely that they won’t know the stage until they do lymph node biopsies. Also, the more aggressive cancers (stage 3) often respond well to treatment.

You did say you are a nurse so apologies if I am going over ground you already know. I know that we don’t always access our knowledge when traumatic things happen so I thought it worth mentioning!

ok, my original consultant blamed the fact that he couldn't see the cancer on the scan on the sonographer (is that the right word?) not telling him. In other words he didn't bloody look at the scan, he took someone elses word for it. The sonographer didn't see it, well, we will never know.

The consultant left the country, but I was told he could quite easily come back to the UK and work for the NHS again. THe sonographer had gone to a different trust, it was going to be suggested that she get more training...

I had a very close friend who worked as a lawyer for NHS cases like mine. He wouldn't pursue a claim as the amount of money I would get would be linked to my earnings-I'd just gone part-time in a poorly paid position to look after my child-so I wouldn't have got much money at all.

I am trying to think of something supportive to say, or do. I am so sorry.