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So much delay!!

18 Apr 2019 23:21

Hi all, 

I went to my doctors on 21 Feb with a sizeable lump in my breast. Having been urgently referred to the hospital on a supposedly 2 week basis, it then transpired there was a 9 week wait (yes nine weeks!) for all urgent referrals. My first appointment with the breast clinic was set down for 24 April!

I couldn't wait that long because my mental health was really suffering, and so I went to a private hospital on 22 March, and on 29 March I was diagnosed with invasive ductal carcinoma.

I was assured by the private hospital that going back into the NHS everything would move much more quickly now that I had a diagnosis. They told me I'd need an MRI but they expected the NHS to deal with this quickly.

I was contacted by the NHS hospital and told I had an appt with the consultant on 11 April. On the morning of 11 April I got a call to say the appt was cancelled, because my imaging hadn't been uploaded onto their system. No idea why not. I got an alternative appointment for today (ie a further week later). Long story short, today felt like a complete waste of time. Told me I have cancer. Well yes, I know that, and have done since 29 March. Told me I'd need an MRI. Well yes I know that too, and have done since 29 March. What has really got me though is that today I was told I'd 'hopefully' get an MRI within the next three weeks. Another 3 weeks!!

The consultant today examined me and said the lump felt bigger than the ultrasound images suggested, but as I told her, that doesn't surprise me because my ultrasound was 4 weeks ago now! 

I'm really really concerned about this delay. I've been told it's because they are understaffed, but to be honest I don't care. I just want progress. The consultant today said that she thought I'd be looking at a mastectomy, so tbh I don't get why they can't get scheduling that now, even before the MRI is done. Apparently that can't happen.

Is this something anyone else has experienced ? I've just terrified myself by googling (I know, I know) and a reputable site has said that surgery should take place within 30 days of diagnosis. For every 30 days surgery is delayed beyond that, it is suggesting that survival rates fall by 9%. I've got 4 young children. I can't be dicing with the odds here. I just feel like no one seems to care that time is ticking and it's my life on the line here. 

 

xx

So much delay!!

19 Apr 2019 09:45 in response to Mammaof4

This is unacceptable!!!

I think I am correct in saying you can be referred to another hospital.  

It might be worth calling PALS (Patient Advice Liaison Service) I think every hospital has a PALS office.  They will investigate for you.  Understaffing is no excuse whatsoever.  Government pathways for cancer referrals are not just guidelines.  

Hope you can get seen soon xxxxx

So much delay!!

19 Apr 2019 10:54 in response to Mammaof4

Hi- I’m so sorry for your delay - it really is terrible and I can imagine your concern

i just wanted to comment with regards to the mri - i Had my biopsy’s on 27th of feb and diagnosis confirmed the following week - every week I seemed to be having another scan or meeting but I’m so pleased they did my mri looking back - I had my mastectomy scheduled for 10th of April and my mri before my opp brought up a lump in my adrenal gland - further pet scan showed that the lump was not connected to the breast cancer and that it wasn’t releasing more Adrenalin that it should have - BUT if it had of been , my mastectomy would have been really dangerous - so they need to do the scans so they know fully what they are dealing with it - it really is for your own good- it is frustrating and I totally get the feeling of wanting the cancer out ASAP but it’s all just part of the process - my lump totalled just under 9cm so the wait really is the worst as I was constantly thinking god it’s so big I just want it out- I just had to trust they were doing the right thinv

i hope you get your answers soon Hun xx

So much delay!!

19 Apr 2019 14:38 in response to Mammaof4

Hi I 2016 Feb I was told I have C I started cemotheropy in June nearly 5 months I don't think that's very good do you. Good luck with your treatment when it starts.

Billy