FND and Breast Cancer Screening

[pippyness]

Two years ago I gave myself breast cancer. Now that I've recently been diagnosed with Functional Neurological Disorder I can be absolutely positive that I unwittingly caused it myself. I was treated all along as a neurotic faker and this is my heads-up to those women with FND that there can be a smooth continuation of utter disbelief and disdain from doctors and nurses should you ever end up like me. I am far far beyond caring now but maybe someone else might benefit from an advance warning.

This may take you 15 minutes to read but that's longer than any British doctor will give you in 2016. My time is for nothing.

Someone somewhere decided that the women who need to be rescanned following a suspicious first-time breast screening mammogram should be informed by a bulky leaflet being sent to them through the post. The shock and horror on opening that envelope unexpectedly. They never thought of that. You're sitting at home suddenly having your eyeballs blasted with breast cancer statistics for the first time in your life. There's pictures too. Just in case you don't get it that they're saying it could be you, yes you. But they literally don't have the time to talk to you.

Even phoning the screening centre nurse got me little response after that letter because, I imagined, the people with the real cancer are the important ones here. So the rescan happened silently, an ultrasound silently a physical exam silently. No, nothing there, the first scan was confirmed as a false positive. I was shown the door clutching a flimsy leaflet this time - sometimes the scanners squash little bits together, they call it overlapping breast tissue, shrug. Come back in three years.

Five months later I found a lump where they'd been looking and another harder lump in my armpit. Yes, just like someone on the telly. My leg on the same side was partly paralysed for about four days at the same time. The lumps are probably nothing but I'll refer you to the hospital says the GP, make another appointment about anything else. But my leg got better anyway.

I went to the breast clinic and the professor there couldn't find the first lump nor could I. He points at my armpit and says, that's a reactive lymph node so no scans necessary. Big long lecture ensues about the Angelina Jolie effect clogging up his clinics. Shortly after I noticed some of my fingers on that side clawing in like they'd become weak. Because I'd had a neck injury four years before that'd never fully recovered it seemed likely to be that.

Another five months went by and although I was told on the phone by a GP to wait a further three months I reckoned that my armpit tumour was visible enough for any doctor to see by eye. Still I was told it's probably nothing right up until the point they were doing a biopsy. This is no lymph node she said. They were all so surprised that I wasn't surprised when they eventually told me weeks later that I had invasive cancer in my armpit. But this was new they said, five months ago was a lymph node.

Things didn't get any easier for me so I transferred to another hospital in London. It gave the impression of being a shining temple of cancer care but it turned out to be another sausage factory. There, after speaking to a surgeon who wondered if I would like her to just amputate my whole breast, my new nurse advocate shook my hand said she was on her lunch break and started chatting to the surgeon about coffee. We'll get back to you, they both grumbled over their shoulders. I was completely forgotten about then. You know, when I needed cancer surgery.

No explanation was given but they were not best pleased that I dared to remind them a few weeks later. I was purposefully traumatised whilst sedated before the surgery and then they ignored me when I said the pain relief wasn't working afterwards. It was their all-important lunchtime so I was left in a side room in agony before being sent home later. They totally despise you and they treat you accordingly when they believe you're not really sick. In the end I chose not to have any more physical treatment after that surgery and they told me not to come back even for check-ups if I felt so badly about it all.

I now know they were right because the diagnosis of FND makes me liable to manufacture my own ill health and they seemed sure of that without saying it to me. The thing I heard more than anything was - you look so well. I guess I could be adept at faking that too. A good all rounder. One year later I've now stopped taking the tablets too because they made me feel sick and I was told they don't do that, plus they remind you of your cancer every day for five years after. Seems sensible to avoid all that completely and just fake myself better. But I wasn't ill anyway, was I? Just a lump of cancerous cells that were binned so I'm not ill now anyway, am I? Fake fake a go go.

I learned quickly not to talk to people about the cancer after I poured my heart out to someone when it happened and they asked me the next day if I was still feeling sorry for myself. No one would ever make a horror movie about this FND hideousness either because it would scare people too much. Yet it's all real and it's happening right here in Great Britain in the 21st century.

Even the Queen's Square neurologist who last month instantly diagnosed me with classic FND symptoms based on my temporary partial leg paralysis didn't want to listen when I told him about the lump I'd found on that same day on the same side. Later he asked me why I'd stopped working again then. Well, I was recovering from the breast cancer surgery. What? he bleated, You mean you actually did have cancer?

He won't have to face me again though because he was able to diagnose and discharge me on the same day. My weak fingers will get better because I am one of the lucky subset of patients who'd randomly heard of FND before diagnosis and I accepted that it was possible. Okay, I get it. Great, a bit of physio and you're cured, goodbye. This man could have handed me the cure for my cancer and he didn't even realise it. So you see it is indeed we who undermine their intelligence. The physio he said he'd refer me for unsurprisingly seems to have been forgotten.

People may well ask, why am I so accepting of the FND diagnosis? First of all, because of my neck injury I was seeing neurosurgeons who've already ruled out everything physical. I also remembered afterwards that when I was 17 I choked on an egg sandwich. From that point on my mouth reacted instantly to eggs with swelling and itching even if I didn't know something had egg in it. My Dad always said it was psychosomatic. That lasted for the next 17 years until I was starving on a trip in Northern India and I wanted to eat an egg rather than eat daal again. It seems a stupid place to do that in retrospect but I didn't react and I was okay eating eggs from then on. One third of my life no allergy then one third allergy after a shock, now one third no allergy after I had to confront it - it's kind of obvious in my case.

I see FND as your brain's silent but outwardly disproportionate registration of shock. Even if you're not aware you've been shocked and everyone tells you it's nothing to be shocked about anyway. It's out of your control. For me it's worked the other way around too (I did say I was a good all rounder.) When I burned myself badly once I didn't feel a thing as I watched a souffle of skin rise up painlessly. That's my brain!

It's been a long harsh lesson learned for me but if you've read this far maybe you can be alert if you have FND and don't want to risk such a thing possibly happening to you after a breast screening. I guess I'd had pre-cancer undiagnosed symptoms of FND that were dismissed all along as health anxiety such as chest pain, a drop attack and intense face pains at night mostly. I've also had chronic unexplained pelvic pain for over a decade and my neck injury persisted for years after it should have resolved. Not a single symptom of cancer till I got the lumps after screening though.

Maybe I'm a one-off, I don't know, but I have since discovered that the chance of being later diagnosed with breast cancer after a false positive screening increases for no known reason.

Today, if I knew that I had FND when I went for a first-time breast screening mammogram I'd ask beforehand to be informed of any suspicious results by phone at least. I think that's the most they're likely to do for you and they could only say no. Be prepared if you can.

To your good health and your good luck.

[pippyness]

Two things I should have mentioned - My GP insisted I register to be checked-up at another hospital. I just remembered too that some years ago a hypnotherapist discovered that I'd internalised a big shock when I was a little kid. I remembered the incident but had no feelings about it and according to my Mum I didn't appear bothered at the time either. If that's the kind of thing at the root of FND how would you ever know?

[VivienneWaterworth]

Hi Pippy

Wow, you've certainly been through the mill, haven't you! Along with so many others with FND, real symptoms of other disorders, diseases, etc seem to be ignored far too often, simply because there's this FND diagnosis.

I can understand some of your frustration (not all of it, by any stretch of the imagination, however!). I started having significant walking issues and then seizures, 20 odd years ago, but I was never given a diagnosis. I was treated, however, exactly as per the textbook for CD, the old name for FND.

Around that same time, I presented to my doctor with several problems. One was that I was having panic attacks when I got too hot, in humid conditions. Extremely reluctantly, he tested my breathing results before and after giving me ventolin. He was just as extremely embarrassed when my results were vastly different, i.e. I had asthma, triggered by hot, humid or steamy air.

Several of my family had just discovered that they had significant gluten sensitivity issues, so my mother asked me to get myself tested to see if I had the same problems...in an effort to see if it was the cause of my walking/seizure symptoms. I went back a week later and was told, absolutely no gluten problems. I told my Mum (ex nurse) and she asked if it was 'one up one down', so I went back to the doctor and asked him. He responded quite angrily that 'not only do you NOT have gluten any problems, you NEVER will have, ..and that's more like the profile of ... Lupus??!!!???!!! ' You should have seen his face and attitude change after that one!!!

11 years ago I had uterine cancer, and for several years I was very worried about it coming back...on my right side. Everyone thought I was being a hypochondriac and eventually convinced me to stop worrying, especially as I had had 2 repair surgeries in the pelvic floor region (which my gynae wouldn't acknowledge that although he did an immaculate job of stitching up the first repair, he had actually caused a significantly more serious problem behind the scenes, so eventually a pelvic floor physiotherapist argued with him to fix it properly. Repair job done by a registrar, who stuffed it up and made it worse than before...yet again!

Anyway, 5 years ago, I lay on the floor to do a physio exercise and felt a massively painful 'tear' under my right rib, so bad that I could barely breathe. A few months later my (new) doctor discovered that I had a paralysed right diaphragm. Fine...can't do anything about that except for major surgery (that I don't need). A while later, a lump around 1inch in diameter and 2 inches long, periodically appeared and disappeared under that rib. My doctor felt it and dismissed it as a naturally occurring sac of pleuritic fluid, from when I felt the ripping injury. Eventually that lump disappeared, but then I started getting a LOT of pain under my right rib, sometimes searing pain, and eventually it was so bad I started throwing up. After 12 months of very detailed tests, including lots of ultrasounds, X-rays and finally a CT scan, he eventually discovered a lump behind my liver.

I suggested that it was the same lump. He said no because there was no space down there for the lump to move itself to this location. He also immediately suspected cancer. Had a biopsy on the lump a month or two later (no rush - one public hospital's registrar was not at all concerned about this lump and were going to make me wait for 2-3 months for tests so I switched to a different hospital!). Biopsy said Not Cancer, but they also discovered I needed my Gall Bladder out.

6 months later, they took the lump and Gall Bladder out, and oops, it is cancer...uterine cancer metastasee, inoperable, stage 4. Instead of chemo, I was given Provera, a progesterone tablet) and when I was tested 3 months later, it had all disappeared.

My doctor seemed to have been devastated by his mis-diagnosis taking 5 years to be discovered to be incorrect and to be cancer. I had requested several times during that time that my diaphragm be looked at again, but he kept shrugging it off. I knew I wasn't well, but everyone put that down to FND. Yeah, right. I remember saying to someone, after the lump was found but biopsy was negative...and before they discovered that I had a mestatasee under my diaphragm, that I felt weary, and the last time I had felt that weary was 10 years ago, when I had cancer.

So I have learned the hard way that you have to be the advocate for your own medical treatment. That test you referred to that was done on your temporarily paralysed/weakened leg is actually one of only two tests available to positively prove that you have FND, so that diagnosis should stand. However, every new symptom that you have should be checked to make sure that it really is or is not related to FND.

Unfortunately, FND throws up one or many random symptoms for varying time periods, short or permanent, that it's really hard to tell when something new is FND or not. I've started on a new medication, had my expected reaction to it, i.e. muscles all over my body locking up, that I was rushed in to see my doctor one day. He did a simple muscle test on my arm, and I swear, I actually heard a voice inside my head say, 'Oh, no, he's caught me out. I might as well give up now', and immediately all the locked up muscles all over my body just relaxed. I was so embarrassed lol!

I hope you have gotten your breast cancer sorted out properly. It's hard when you are stuck with one doctor and getting a second opinion isn't an option (like in the UK). I am very surprised by the attitude of the medical staff to your cancer. This time around I have been treated extremely well. The first time around however, I think they must have gotten sick of me freaking out about relapses, and them never, ever checking ever above the waist line but just doing a 2 second looky see, a prod and poke around my abdomen and the uterine cancer equivalent of a pap smear. "World's best practice" !!!. Well, you and I both know what they can do with "world's best practice" !!!

Sorry my reply is so long...but then I guess you asked for it lol!!! All the best from a fellow traveller along this path called life.

[Garlicandonions in reply to VivienneWaterworth]

I'm so glad I've read these posts.

I could weep.

I've st gnus diagnosis for 18 months now and as a health professional have had so many mixed thoughts, responses from people that I've began to doubt my own self. Symptoms come and go, the clawed hand, jerks, parasthesia, disassociation etc. I've had various medical issues, stones of every type, spinal fusion, sepsis blah. It's goes on. Now I've found a rash on my breast, unusual in nature. I've stopped going to the GP or pursuing promised care or investigations because of exactly the reactions you both outline. I was meant to have a repeat MRI after FND diagnosis as I have a few brain lesions. It didn't happen. Diagnosed and discharged in a day!

I'm honestly ashamed of the service I belonged to. Once a gregarious, autonomous professional and I'm now almost the image of apathy. What's the point? My kids. That's what. So now I've read this, I need to play the game, "yeah, I've made all this up and had to walk away from my vocation to keep it going. However, I think you need to refer me to yet another service, I know, what a pest!"