Cervical screening audit - confused and upset

Hi CJ86 

Sorry-I haven’t had the same experience of this but wanted just to come on and say how sorry I am to read all you’ve been going through. 

As you say, you’ll need to wait until the appointment to know what the difference of opinion is about your care, but there’s not a lot that can be done about that now given that you’ve had a hysterectomy, chemo, radiation and brachytherapy as nothing can change that. However, I’d be angry too if I found out that any of those treatments were not required.

I’d be concerned about what’s happening now- post treatment. I’m presuming you mean lymphoedema in your leg? You have said lymphoma, so just checking? 

It’s really shocking that things you have read on your NHS app were not followed through, and I can definitely identify with that as this has happened to me more than once. I would no longer be fobbed off by any gp, as it’s just not good enough to say this is a result of cancer treatment and do no more about it. However, it’s more difficult if your oncologist cannot get appropriate tests done by haematology. 

Are you going to have ongoing tests to monitor your white cells? If so have you been advised of the level required to have a biopsy done? 

I hope that others might be able to share their experiences with you, and hope you can get some answers when you have your appointment.

Sarah xx

Thank you for replying and yes I did mean lymphoedema in my leg.

Honestly I was about to go to PALS but then I received that letter so I decided it would be better to wait.

The GP has offered to put me on a priority list for antibiotics whenever I call but to be honest the cellulitis usually presents in my stomach too which requires IV antibiotics anyway. They have also stated they will do 6 monthly blood tests.

Haemotolgy stated they are not interested unless my white cells drop below 1 (neutrophils and lympocytes) and currently they have floated between 1.1 and 1.2 (should be 2 for a normal count).

Hi, 

I had the same treatment minus the hysterectomy. I am 5 years out and I have the same issues. 

Low white cells still. Lymphatic/cellulitis issues.

The lymphatic issues cause a decrease in T cells, which can lower your immune overall. It’s a horrible cycle… 

Unfortunately I also have a lot more issues now as time has gone on. 

My audit showed my smear tests were incorrect. I’m guessing your difference of opinion will be the same regarding yours not being read appropriately too? If you need further advice with this I can probably help, you need to be prepared for your appointment. Don’t go alone! 

Thank you so much for the reply.

Depending on the time I may not have anyone to go with me but I was going to sneakily record the meeting. I haven't even got an appointment yet though.

I know a colleague who is suing the NHS for issues with his premature son. Our hospital and GP surgery are horrible and I get the third degree every time I take myself to A&E with cellulitis in my stomach about why I haven't called my GP, 111 etc and it's because I KNOW I need IV antibiotics if it's in my stomach. In Sept I developed sepsis because they kept me in a chair in A&E for 24 hours. I was barely conscious and offered no food or drink.

I'm about ready to sue myself I'm that angry but despite that I do very much value the nurses, drs, staff and my oncologist is amazing (unfortunately on maternity leave ATM) so I'm very morally divided.

I developed recurrent cellulitis in my leg but it took quite a while and a scan to show lymphoedema, as my swelling is minimal. I have emergency antibiotics at home now. 

Eventually I started with ‘infections’ chills/unwell but no redness. I kept a diary and realised it was happening after intercourse. My hospital were useless, bordering on rude saying they didn’t know what the issue was. I had to push to be seen at a specialist hospital. Immediately I was told that the infections are inside my pelvis, blood stream, well known after brachytherapy. I’m still dealing with this. The internal skin weakens over time. 

On top of my bowel issues, in year 3 I developed urinary problems. I’ve had procedures but they have failed. Year 4 the back issues came along. Scan showed radiation damage. I’m struggling to walk some days. My nerve issues are deteriorating. I recently paid for a private colonoscopy which showed bleeding from radiation damage. This wasn’t evident 2 years ago on my NHS one. I’m told the damage can continue for years, 5 years is the peak… 

The reason I tell you all this, not to scare you, I know some ladies have been more fortunate. Others worse than me. Ultimately though for the first 2/3 years I thought the problems would get better/were manageable. I had no idea what was coming my way. 

My career is over. I’ve spent thousands and thousands on private medical services in the last couple of years. From a legal point I’ve had no choice but to take action. I used a specialist firm who deal with misreported smears. That has made it less stressful, and I’m legal myself. 

Im fortunate I have children, some ladies have another hurdle of fertility and the costs of alternative ways of starting a family etc. 

Hopefully this just gives you another side of it all to consider. I really had no idea what the treatment could do long term! 

Wow, I am so sorry for what you have been through! I mistakenly thought that I had escaped easy when I had nothing for the first year but it's clearly escalating for me now.

Not going to lie, I am already extremely worried about what the future holds. 

In regards to antibiotics, the consultant when I was last in hospital write to my GP suggesting I should have daily low dose antibiotics. My GP refused stating I wasn't there yet.

My Father in law has lymphoedema and has emergency supply of antibiotics despite not having cellulitis toy knowledge. My GP also stated this was not an option but not sure why.

Your GP needs to see a copy of the British Lymphoedema Society guidelines, you can print them off the website ; ) 

I requested an NHS referral to Prof Mortimer in St George’s London. He put me on daily and sent a care plan to my GP. 

Hopefully you might not get anymore issues, some people are lucky with it. I’m just taking it one day at a time, it’s a position nobody wants to be in. They keep offering counselling but so far I’m trying to keep myself as positive as can be! 

Hi CJ86

Many GPs are ill informed about lymphoedema - I gather the topic is not well covered at medical school.  From personal experience I recommend the Lymphoedema Support Network (LSN) for reliable information and support:  www.lymphoedema.org

Section 1.5.1 of the BLS/LSN guidelines for management of cellulitis in lymphoedema state that '.....patients who have had an attack of cellulitis should carry a two-week supply of antibiotics with them......'  I suggest showing these guidelines to your GP to support your case.

Section 3 of the guidelines address 'prophylactic antibiotics'

https://www.lymphoedema.org/wp-content/uploads/2022/10/management_cellulitis.pdf

Are you attending a lymphoedema clinic?  If not ask your GP for a referral.  If your GP isn't helpful I would contact (call or e mail) the LSN for advice about accessing a clinic.