I’m the guy who posted a couple of weeks ago about my partner dying suddenly.

If you don’t mind, i’ve written out a wee bit about what happened to Sharon because I have started a campaign to change things in the NHS so that what happened to her doesn’t happen to anyone else.

Hopefully some of you may want to you copy and paste it to your e-mail contacts it will make them aware of the sorry tale and might encourage them to support it or even spread it by word of mouth. I’ve already had several messages from people I don’t even know thanking me for doing this because they were completely in the dark as was Sharon.

It’s a bit long-winded, sorry. I’d be very grateful if you could share the facebook link around to any of your colleagues/friends/family, etc. who you may think would find it of interest/benefit.

Basically an hour before she died Sharon’s doctor told us he reckoned it was the fact she had had a kidney transplant and the resulting medication she needed to take that caused the cancer. It was skin cancer but by the time she felt any symptoms it had spread to her brain, liver, pancreas, spine and possibly her lungs. Just about the only thing it didn’t get was her new kidney.

She had aspot on her ear for months that wouldn’t go away. Turns out that was the cancer. If she’d gone and had it removed when it appeared chances are she’d still be alive.

She didn’t know she was in a high risk group of skin cancer.

I went on google after she died and found out that between 40% and 70% of transplant patients will definitely get skin cancer. It is because of the medication they need to take to stop the body rejecting the new organ. It kills the immune system. Unfortunately, the theory is that your body is constantly producing cancerous and mutated cells but in the average person your immune system kills them. In transplant patients you don’t have this self defence mechanism.

The drug company have cancer and skin disorders listed as a side effect that 1 in 10 people will experience on the drug. However it is on page 19 of a 24 page booklet and is hidden away alongside things like loss of appetite, nausea and dizziness.

None of Sharon’s medical team told her this. To be honest it is because they didn’t know. They knew there was a higher risk of skin cancer but the actual risk is estimated at 65 to 100 times greater than the general population.

Her doctor at Monklands was not a kidney or transplant doctor because she had been admitted to the infectious diseases ward. He didn’t know either but when he found out it was cancer he went and looked into it and it was him that told us.

It’s been known about for over 10 years in America. Australia, France, Italy, Germany, etc. but not, it would seem, in the NHS.

Sharon saw three doctors a month before she died. The spot on her ear had become the size of an acorn. Two of them gave her anti-biotics for it and sent her home with paracetamol and co-codamol for the pain. The third one was her kidney doctor and he tried to drain it with a syringe but no pus came out, only blood so he left it alone. She got an urgent referral for day surgery to remove it. I asked the doctor if it could not be treated as an emergency because of how ill she was and because of her transplant history (I thought she had blood poisoning). The doctor told me that the only emergency priorities in NHS Lanarkshire were cancer or suspected cancer. This was 3.30am on 10th July in the out of hours emergency department at Monklands. They gave her Valium to try and help her sleep but it didn’t work. She got admitted to Monklands two days later and she got diagnosed with cancer on 19th July, told us on 22nd and died on 24th. Two weeks after being sent away with anti-biotics for it from the same hospital.

I got the day surgery letter through dated the day she died. Her surgery would have been 31st August. That is how long an urgent priority takes, she went to the doctor about it on 2nd July and the referral letter got sent that same day. They took it off her a few days before she died – not because they were concerned but because there was a cancellation elsewhere. If it hadn’t been for that it would never have come off her and we’d never have known it was the source of the cancer.

Quite a tale really. You couldn’t make it up

Sorry for the long message

http://www.facebook.com/SignForShaz

Thanks for this – I promise I won’t clog up the boards any more

Thanks again

Sorry to hear your story, and hope you’re getting the financial stuff sorted. Don’t worry about coming on here writing stuff – useful info, and nobody has to read it if they don’t want (anyway it’s already clogged up with a complete load of rubbish).

thanks. Back at work yesterday. Daughter back to school yesterday – quite hard that.

Financial stuff is a difficult process – have been denied bereavement benefit and widowed parent allowance because we weren’t married. Even though we lived together 11 years and have two kids who took my name, we both worked fulltime over that period and didn’t claim any other benefit (other than child benefit and for a time we got working tax credit but that stopped a few years ago)it doesn’t count for owt in the eyes of the Government because we didn’t have a piece of paper making it official.

Let that be a cautionary tale to anyone with a partner and kids who is unmarried to their partner. I am lucky, I have family to help with childcare and a very flexible employer, plus I earn a decent salary. Even at that things will still be quite tight but other people may not be as lucky, if lucky is the right word.

Bloody, incomprehensibly, awful. But thank you for sharing the knowledge with us.

****, words don’t really do justice to how much I feel for you, and how much I don’t want this to happen to us.

Good luck with everything, and remember that it will get easier eventually.

All the best,
Kev

It must be incredibly hard for you to put that into writing. Again, I have nothing but my condolences to add.

Paul.

It is and was known, even when a student in Biomedical Science I knew this. Someone along the line probably forgot to mention it, that and you seem to have had an unlucky line of incompetent doctors. I got an urgent referral as soon as I’d had a mouth ulcer that had been in my mouth for a bit too long and another urgent referral when I had a chalzion that would not go away.

Whilst transplant drugs cause a lot of problems, taking them has a far lower mortality rate compared to not having a kidney transplant.

That aside, I hope you are holding up.

Truely awful read all the above. You are very brave and should be commended for spreading the word so close to such a terrible time.

Hugs for you and your family.

Shocking and awful to read that but thanks for posting and bringing this to everyones attention. I can’t begin to imagine how you’ve coped.

– I promise I won’t clog up the boards any more

I’m sure I echo the sentiments of everybody on here when I say that whenever you want to get something off your chest -feel free.

All the best.

Thinking about this, this really was a run of bad luck. Bad doctors plus the disease itself – I’m very sorry for your loss – if it was a squamous cell carcinoma – patients can have literally dozens and dozens over their lifetime when on these kinds of drugs and not have them metastasize to distant tissue even if they are caught late.

Did histology show that the cancer definitely originated from the neck? Not say an SCC from another location? If the former is the case, I’d be very very angry – not with the NHS as a whole but that team in particular.

My boss is on immune suppressing drugs for a condition he has. I’ll mention this to him on Monday when I’m back at work and make sure he knows that he may be at increased risk.

I hope things start to get better soon and hopefully the knowledge that your’e potentially saving the lives of others will be of some comfort in the future

Best wishes to Grantus and his family at this difficult time.

Hi, it was diagnosed as a metastatic malignant melanoma. When I was scouring the net it didn’t look like any melanoma I could find pictures of. It looked identical to what you mentioned – a squamous cell carcinoma. In fact, somewhat poignantly, the picture I found of one (in American patient literature dating from 2008) was even in the exact place on the person’s ear that it was on Sharon’s.

P.S. I am not wanting this to sound like a bitter rant against the drugs. Without them you are dead if you need a heart or liver transplant, etc. With the kidney you do have the fallback option of dialysis however, like you say, a life on dialysis is not good. I know 100% that if Sharon had been told she had an 80 or 90% chance of getting skin cancer she still would have had the transplant – no doubt in my mind. The information on the drugs is quite simply not good enough. It probably meets the legal need for the company to notify people but morally i’d say it’s suspect.

Sharon was told once in 2003 – pre-op – that the downside would be she would be at a ‘bit of a higher risk of certain types of cancer’.

That was it.

I would think that ‘a bit higher’ is the understatement of the century.

I have been told anecdotally by a neighbour who’s wife works in another hospital up here as a senior cardiac nurse that when she told the cardiologists the story last week at a team meeting they just looked at each other and started googling there and then on their laptops. At which point they basically said, “this is serious”.

I don’t know what the hell has happened up here. I got a message from a guy at West London Kidney Patients Society telling me that it is drummed into them from day one and has been for the past ten years.

Very angry.

and the DWP bereavement benefits criteria are the icing on the cake

hi bwaarp. Just noticed you’d asked another question I hadn’t answered.

The doctor told us about an hour before she died that pathology had decided that the lump removed from her ear was most probably the primary source.

Thinking about it I would have thought it was either a ‘Aye’ or ‘No’, not ‘most probably’ but then i don’t know about biology and how easy it is, or otherwise, to identify such things.

There was certainly nothing noticeable on her body. In fact, looking back it seems quite surreal. When she told us she had liver cancer she said that what was confusing the doctors was that it was a skin cancer but they couldn’t find the primary source anywhere on her body. Strangely she had this growth on her ear so even at that time it couldn’t have looked like any canceroous growth any of them had ever seen.

I find it really bizarre. If I was reading this i’d think the person writing it was making it all up. I can promise you on my life that I am not.

grantus, so sorry for you loss and I wish you and your daughter all the best. If you don’t mind me asking what were the immune-suppressant drugs Sharon was on and how long had she been taking them? The reason I ask is that I’m currently taking Ciclosporin and have been told to be very careful in the sun (due to the increased risk of skin cancer), but not to worry too much as I’m only on a short course (3months).

It was Neoral (ciclosporin) She took them twice a day but she also took another one called Mycophenolate and another still, but the name escapes me. She also had Prednisolone which is a steroid treatment I think.

She was on them for 7.5 years mate. 7.5 trouble free years may I add, so as not to scare anyone too much. I’m not blaming the drugs – they are a necessary evil – if that is the right expression.

The Kidney page on the NHS website was last updated in March 2012. It tells transplant patients to wear the highest factor UV protection even on non-sunny days yet on the same page there are two pages of immuno-suppressant side effects listed and not one of them mentions skin cancer (yet the Neoral leaflet says 1 in 10 users will get skin disorders and cancers, although it is a bit hidden away IMHO).

Sounds like you’ve already been told.

Also seems like it is a total lottery whether you are told or not.

I hate the thought I might be scaring people but on reflection, if I had the choice, i’d rather Sharon was being paranoid about being in the sun every day for the rest of her life rather than no longer with us.

Take care.

Maybe to try to be positive for you – when Sharon got her transplant in 2004 there was a woman in the ward who had received a transplant over 20 years prior and who had had no problems with it.

Also, if 1 in 10 cyclosporin users get skin disorders/cancers then that means 90% don’t

I hate the thought I might be scaring people

Not at all pal, the more information we have the more informed we are to make a decision, after all life is about deciding if the risks are worth it! Thanks again for sharing your story, I’m sure you will help more people than you will ever know.

This is just awful. Sorry for your loss.

Mate get all the paper work from them you can including the pathology report if at all possible and pass it on to an independent lab to take a look at. Your posts have left a bad taste in my mouth. 😐

‘most probably’

With some histopath slides, the cancer cells can be hard to make a differential diagnosis. Some features can sometimes effectively mimic other cancers. If the site on the ear was definitely a melanoma and so were the metastases then it’s pretty cut and dry, that was it. The question would then be why someone didn’t pick it up. If it looked like an SCC I’m almost tempted to think that because they do not often metastase, the doctors decided not treat it urgently? By the time they got round to it, it was then too late? I also have a sneaking suspicion (because of the ‘probable’ part) someone didn’t carry out enough lab tests for a proper differential diagnosis.

Be warned, some medical teams I have heard of have systematically covered up negligence and surgeon error to cover each others backsides. You need to get nasty if you’re going to get an answer from someone. The problem I see with this, is that going down this route might further upset you. You can either let this be and forgive what has happened or get over it by finding out what went wrong, if someone is to blame then finding them may help you. Then again, no one may be to blame and you may find yourself with more questions than answers.

Good luck. If you have any questions, feel free to ask.

grantus – you are an outstanding example of Manning The Fudge Up.

I salute you.

Cancer. I get pretty upset when I hear about people dying of cancer.
Apart from family members, a colleague died about a year ago – again all the tests and hospital visits he had to endure before cancer was suspected. By the time he was diagnosed properly it was too late.
WHY is it that cancer seems to be so low on the list of diagnosis?
Sorry for rambling but this really pisses me off. Or upsets me, I dunno which.
Sorry grantus, and thanks for passing the info on.

WHY is it that cancer seems to be so low on the list of diagnosis?

Because, sadly, sometimes it shows itself in very strange ways. My mother-in-law died of cancer a couple of years ago. She was a very fit and active person, and went to see her doctor with a stiff back. Of course he thought it was muscular. A couple of weeks later and it was still painful, so more tests were done, and it was found that it was cancer which had already spread to most major organs – she was dead three weeks after that.

This is a very sad story, and well done for trying to make people more aware of the issues.

Grantrus ask the hospital and all departments concerned for a Data Protection file of all information and medical notes, they will charge for photocopies, but you do have a right to read the original notes with a qualifired member of staff there to explain medical procedures and abbreviations.

They want like it , but have to provide it by law.

bwaarp – I made a point of stressing at the outset (to the Macmillan nurse and the consultant who treated sharon in her last days*) that this was not about finger-pointing or recriminations because I wanted to get the NHS on side and if I can do one thing it would be to try and make sure no-one ever goes through this again.

*he is not a renal or transplant specialist – she was admitted to the infectious diseases ward and that is why he took her case. She did also have Endocarditis and initially they suspected it had migrated to other organs as they gave her an x-ray and ultrasound within an hour of admission. She got a CT scan within 48 hours which showed lesions in the brain, liver and pancreas. The doctors remained hopeful and said that until they could prove otherwise they were still considering it to be a severe bacterial/fungal infection. She was getting pumped full of I.V. anti-biotics and anti-fungals and after 4 days the level of infection in her blood had halved. What was puzzling the doctors was that she wasn’t getting any better and they had increased her Morphine dose by this time as it was the only thing that was taking the pain away (she’d been taking paracetamol and co-codamol at home – I can’t imagine the agony she must have been in. Looking back I think she knew something was seriously wrong – i’d tried to get her to hospital for about 10 days before she actually got kept in by her renal team but she point blank refused – short of forcing her in an ambulance there was nothing I could do. It was too late by then anyway, she was already at Stage IV)

She also put on a stone in a week, even though she was hardly eating. It was all abdominal fluid. She eventually got enemas and they tried to drain some off but it proved difficult.

I have no issue with how she was treated in those 12 days she was in hospital – they were all first class to a man and woman and many of them were absolutely devastated when she died.

My problem is that there seemed to be a complete lack of awareness beforehand, even within her renal team, of

a. what a squamous cell carcinoma looked like
b. just how ill she was in the week before her admission
c. the lack of education and screening since her transplant.

What is making it harder today is that i’ve already heard from the person in West London and also from someone in South Wales who’s wife is a transplant patient and gets annual dermatology screenings.

I have loads and loads of questions I want answered but probably the most simple yet devastating one is one my daughter asked me last night:

“Why didn’t someone look on the internet before you did?”

I couldn’t say anything

Ben, your mother-in-law’s story sounds EXACTLY like Sharon’s.

On 1st July she felt extremely tired. For a few weeks before it she had been very lethargic and a bit down in the dumps but not in any pain (much to my guilt I thought she was unhappy in our relationship – now I know she was dying). By 24th July she had died. It’s still unbelievable how rapid it all happened. The doctors said they hadn’t seen anything as aggressive for years.

I’m hanging onto the fact that the cancer didn’t get into her transplanted kidney – i’m trying to look at it as a final act of defiance over the disease.

thanks project.

At times like these you realise how powerful things like internet forums and facebook can be.

Hi Bwaarp.

I sent a picture of a SCC I got from Google Images to Sharon’s Consultant and he replied that it took him a few moments to realise that the picture wasn’t actually of Sharon. However he also confirmed to me that Pathology matched a biopsy of one of her liver cysts to the growth removed from the ear and they identified both as being the same and both as being Melanoma.

The thing on her ear was 100% a SCC. I wish i’d taken a picture of it now but I know if i’d tried she’d have told me to piss off…

Very very sad

I understand completely where you are coming from with your posts and understand equally how posting about crap doctors etc can be therapeutic. However, a cautionary tale – my father died of lung cancer a few years back. He’d been coughing up blood for 6 months or so before they took him for any proper investigative tests, so by the time he was diagnosed it was really too late to give him much of a chance of survival long term. I spent years thinking and asking lots of what if questions and looking for someone to blame. It made me ill. Then I worked with a few doctors, some which are right at the top of their tree. This taught me that absolutely everyone makes mistakes. They dont do it deliberately, but they make them, learn from them and move on. I doubt anyone deliberately missed that cancer, but I can pretty much guarantee that they will never miss a similar cancer for the rest of their career.

Grantus words escape me. I wish you the best of luck in whatever route you choose to put this issue to bed. If you do choose to look at a negligence claim.or think you might in the future can i suggest getting some basic legal advice now (not from a claims management company but an independent solicitor). I get the impression.this isn’t on.the agenda at the moment but if I was in your shoes and mistakes had been made I would expect someones insurance to at least help with the financial side of things. I am neither a lawyer nor medic just a dad of two.

Her Dad is worried this will take over my life but I assured him it won’t. Equally, when we were burying her ashes last week I got angry when I watched my daughter talking to the plot on the ground and it comes and goes. Ultimately I know the cancer wasn’t missed on purpose but equally, it’s the second most common skin cancer unless i’m mistaken. If 3 doctors can’t spot that in a woman who was three weeks from death, given her medical history, then honestly…
..well I don’t actually know what to say. I know her renal consultant is devastated and they are putting action into place already to stop it happening again but by the same token – he may be gutted but he can still go home to his family at night. I’m here with two kids and bear in mind Sharon got refused life insurance 11 years ago when she divulged that she would need a transplant at some time in future. Added to that the government won’t pay me bereavement benefit or widowed parent allowance because we weren’t married and it’s hard not to get seriously **** bitter. If no-one will help me then i’ll need to help myself.

But then ten minutes later I feel sympathy for the doctors and then ten minutes after that I feel guilty for not fighting for her more.

No easy answers

What is becoming clear is that the level of care and education in the NHS is a complete lottery.

I mentioned about West London and South Wales already. Well, I also got a message from someone I used to know who told her friend my story. Her pal is a transplant patient of 8 years – the same time Sharon had hers. Her pal got told everything and gets regular skin checks. Her medical team are in Edinburgh. Sharon was 40 miles away in Lanarkshire and never got this

Grantus. Can’t begin to imagine how you seem so together just now, never mind taking the time to share stuff on here with us.
Sincere condolences, and thanks for sharing.

I sent a picture of a SCC I got from Google Images to Sharon’s Consultant and he replied that it took him a few moments to realise that the picture wasn’t actually of Sharon. However he also confirmed to me that Pathology matched a biopsy of one of her liver cysts to the growth removed from the ear and they identified both as being the same and both as being Melanoma.

The thing on her ear was 100% a SCC. I wish i’d taken a picture of it now but I know if i’d tried she’d have told me to piss off…

I’m confused here, Path say it was a melanoma but you say it was an SCC? You can’t really tell by looking at it with the naked eye. I definitely think you need to get a medical lawyer involved in this though. This seems to potentially be a blindingly obvious mistake by the doctors involved and although I hope you do not push for anyone to be punished, what would be nice is if they are scared enough by you not to make the same mistake in the future. An admittance of failure may also help you move on.

A tragic story, I’m very sorry to hear what’s happened Grant.

I’d caution against getting a lawyer involved, especially at this early stage- it won’t help you to achieve what you say you want to.

I’m confused- was it a squamous cell carcinoma or a malignant melanoma? Do you (or does anyone else) know? The course of your partner’s illness (the widespread metastases and her rapid deterioration) make it sound like a malignant melanoma but those pictures look like a SCC, a cancer which wouldn’t normally be expected to be so aggressive.

Off those pictures I’d actually have thought your wife had a keratoacanthoma but her history of renal transplant with a (rapidly?) growing skin lesion would have worried me.

The endocarditis sounds like it might have muddied the waters too?

Thing is, cancers can often be atypical and mimic each other. Could have been unlucky and had a melanoma that looks very similar to an SCC.

Lower extremities – but still….kind of appropriate

http://www.ncbi.nlm.nih.gov/pubmed/10546428

This get’s back to the point earlier, maybe the doctors thought it was an SCC to begin with and were….somewhat more relaxed about treating it.

http://www.jvra.com/verdict_trak/article.aspx?id=10864

Bwaarp – they certainly can do. Dermatological conditions often look different on ears to how they do elsewhere too. What’s odd is that looks nothing like a melanoma. Perhaps it’s hiding underneath a keratoacanthoma??

Think I’d want to:

– increase awareness of skin cancer risk in transplant patients – medical / nursing staff
– increase awareness of skin cancer risk in transplant patients – renal transplant patients
– screening for renal transplant patients – perhaps, needs research to determine risk / benefit

Given what Grantus has posted on here I think the most unfortunate thing is that his partner wasn’t aware of her increased risk and therefore thought nothing of the skin lesion on her ear until it was too late. When she first presented with it, if the first doctor she saw had done the best thing he could have that would have been a 2 week wait referral to dermatology. I doubt (but we have no way of knowing) this would have made any difference to the final outcome unfortunately. I certainly would be wary of blaming the doctors – they have an educational need by the sounds of it, but I don’t think they were negligent and even if they were I doubt that they caused her death. If grantus wants to achieve change and stop this happening again, which he seems to, I really don’t think suing people and being so critical is the way forward. These drs will be doing much soul searching have no doubt.

Bwaarp- the subungal melanomas you’ve linked to are a well known banana skin, AFAIK melanomas looking like keratoacanthomas aren’t.

The consultant thought the library image of the SCC was Sharon. That’s how identical they were in appearance.

What I don’t get it that when she got her diagnosis on 19th July (metastatic melanoma) the lesion had been removed the day prior. Sharon told us the doctors were confused by the pathology result because they couldn’t see any sign of melanoma on her skin. The acorn-sized lump removed from her ear 24 hours prior still wasn’t registering. If I was reading this as an outsider i’d be sceptical and would thing the story had been embellished for effect but I promise I have not.

Correct what someone said – if her GP had referred her as an emergency on 2nd July it would have made no difference. However, what if that same GP saw the same thing on someone else the week before and that particular patient had only had it a week?

What about a renal consultant trying to drain it with a syringe? (I know he will be soul searching as he was very fond of her and treated her for years but come on??) My sister is a dental hygienist and when I showed her the pic of a SCC I put up on facebook she looked shocked and said she wished she had seen it on Sharon earlier as she was trained at dental school to look for these as they are frequently found in patients’ mouths. One of her colleagues has a dentist for a husband and she said he always has a look at his patients’ ears for these because they are common as people forget/don’t think to put sun screen on here and because the ears get the sun all the time really.

Unless my google skills are waning, SCCs are the second most common form of skin cancer yet 3 doctors in the space of a week didn’t recognise a large one and a dying woman.

What is making this worse is that I thought this would be the situation across the NHS but it has become obvious it is not and Sharon has been EXTREMELY unlucky as bwaarp said earlier.

Thanks for the information by the way, it is very interesting subject, taking the emotion aside

Know what? I’m also against suing doctors however the last few days have toughened my outlook somewhat.

Sharon got told to **** off when she tried to get life and critical illness insurance when she divulged she would need a transplant at some time in future.

Nationwide put my mortgage ‘on hold’ for three months to allow me to sort finances out, etc. However, ‘on hold’ doesn’t apply to interest which will still accrue.

Tesco Bank would not offer me a payment holiday for two months to allow similar.

Me and my kids have been told to **** off by the government when I applied to them for bereavement benefit and widowed parents’ allowance.

EVERYONE gets their coin – so why should I be different??

Why shouldn’t I therefore try to take the local NHS authority for whatever I can get? It’s a hard world and no **** is going to help my kids so I need to do it