6 monthly scan results

A couple of weeks ago I visited the Royal Marsden for my Summer 6 month scans – chest x-ray, ultrasound and boob squish.  Stupidly (and I should know better) I neglected to take some ibuprofen before my boob squish.  I was once again in extreme pain and so super envious of ladies who don’t have pain.  (How do some ladies go jogging without a secure bra?)  I suspected the mammographer had spotted something as she insisted on doing a couple of extra scans to ‘get in the sides’.

Next up was my ultrasound.  Whilst I was changing into my ‘everso sexy’ dressing gown, I heard the radiographer being called in to see my mammogram results.  Long story short she said she could see a small dot but suspected it is a cyst.

Today was my appointment with my consultant.  He has vast experience with phyllodes tumours as well as a wonderful disposition and honest, caring approach to me, the patient.  I’m so very grateful for such a fabulous consultant.

We talked about ‘the dot’.  We’re not sure it’s a cyst.  I’ve had no other cysts before now.  BUT rather than poke around and upset my breast tissue, we decided to leave it ‘just so’.  My consultant has asked that in six months we have a full set of scans and tests again (usually I have a mammogram once a year in the Summer).  He did, however say that if I had any concerns or worries at all, I was to contact him directly and an appointment would be found.  I’m happy with this.  I appreciate his experience and the open discussion.  I feel assured I’m in the best hands and care.

He also made sure we spoke about my auto-immune disease.  The drugs I had taken and the side affects I’m still left with (as well as the residual disease).

We spoke about my friend who’s currently undergoing surgeries following the discovery of new phyllodes tumours in her heart, liver and lung.  He wants me to forward details of the hospital and surgeon so he can learn more about the case and educate himself and his team.

We also spoke about a clinical trial that I’m trying to get set up in the UK for Phyllodes.  I’ll write more about it soon… hopefully with good news.  Once again, he wants me to keep him in the picture so that he can ensure he/the Royal Marsden are able to recruit for the trial.  Such positive news, we hope.

Finally we spoke about life.  His and mine.  He asked me how I was doing.  Was there anything else I was worried about.  Any other aches, pains or points of concern.

I feel totally looked after… and hopefully the dot will remain just that, a dot.

Health Update

Yesterday I had a follow-up appointment with the dermatology hospital specialist to see how the nuclear levels of drugs were working on my auto-immune disease, Lichen Planus.

I was a little sheepish when I went into the consulting room because I didn’t complete the whole drug regimen prescribed.  I know.  Do as I say, not as I do.  I began by explaining why I stopped.  At first he looked at me as if to ask if I didn’t believe he was the expert in the room, but then he smiled and told me he’d have done the same if experiencing the same side affects!

So what side affects was I experiencing (and that I haven’t told you about!), some of the worst were visual migraines which would come on quickly and mean that I couldn’t see properly, certainly couldn’t see any written word or computer and even when it came on when I was playing tennis, I’d mistake flashes of white migraine for the ball (most amusing to watch not to experience)!  I also had horrible pulsing pain in temples.  A lot of stomach cramps.  Nails crumbled if I touched anything.  Vomiting in the night.  Weird dream/nightmares that were totally vivid and technicolour.  Odd ‘away with the fairies’ feeling where I’m in the room but everyone around me is underwater.  And those are just a few of them as well as not a great head space and a lot of tears.

He was, given the above, pretty impressed that I’d managed to keep going with them for as long as I had.  We then moved on to examining the lesions.

Really pleased with the nuclear drug regimen.  For the most part I’m now left with ‘burn-out’ scarring on my wrists, torso, belly, thighs, armpits and feet.  Some of these areas have faded already but he told me that the scars sometimes don’t go for many many years and in some cases, never.  I’m not sure any of you will be seeing me in a swimsuit for a long time!  (**collective sigh of relief**)

The disease is still active in me though.  I have a new lesion on the palm of my hand and more on my feet again.  He’s recommended that I continue with the steroid creams on my hand and feet and monitor the situation.

The other area of concern was in my throat.  He examined my mouth and said he couldn’t see any lesions so the drugs had worked there too.  However the ‘piece of bread’ that I can feel stuck in my throat may not indeed be a lesion at all.  He believes it’s too far down my throat to be LP as it usually doesn’t go farther than the back of the mouth.  He thought that this may be damage from the drugs or a tear in my throat that perhaps has been exacerbated by the vomiting whilst taking the drugs.  He said he wasn’t too concerned but that I should keep an eye on it.  It may well heal itself in time and now that I’m not taking the drugs nor having the side affects it may heal faster.  My call.  If I’m worried about it and it continues to remain then he said I should go back to the GP and ask to be referred to an Ear, Nose & Throat specialist.  I’m happy to wait and am sure he’s right.  It’ll heal in time.

So where now?

He was super pleased with the progress.  He was very impressed with my NHS GPs who’d prescribed early the nuclear level of drugs and said that he’d never seen an improvement of this level given the severity and extent that the Lichen Planus has spread.  He said usually he’d expect to be seeing me for many more months/years before seeing this sort of improvement.

I know from the Lichen Planus Support Group that I’ve joined on Facebook, and which has been a huge support in understanding this disease, that my recovery is incredible.  There are people in the group who literally have been fighting this for 10+ years with no remission.  Others for whom recurrences are regular.  So maybe my own immune system isn’t as knackered as it would appear.  Maybe I’ve been able to clear some of it up without the drugs.  I’ve been juicing lots of good immunity fruit and veg and even found an company (Botanic Labs) where I purchased 3 days of immunity shots.  I don’t know if this all made a difference but I certainly felt better for them all.  I just wish I’d be able to afford to continue with 3 days of shots every couple of weeks.

I know I’m not out of the woods yet.  I am however much better than I was.  I have a bathroom full of nuclear drugs.  I have access to a supportive specialist and a wonderful GP practice.

We did however decide that I should be discharged from the hospital.  If I have another attack, I must start the drug regimen again.  I have the drugs already.  He’s also given me an open appointment at the hospital so that if I have another attack or I feel I need to see him, I can.

So for now, I’ll be applying steroid cream to my hand and feet.. the best way I know to make it work at super strength is to wrap in clingfilm and allow to fully soak in.  So this is me today.

IMG_8700 IMG_8701

Hospital – Dermatology

Today is my appointment at the hospital with the dermatology consultant.  The appointment, by the time we got to this point, actually came through remarkably quickly.  I’m terrifically thankful for the NHS and relieved to be seeing the experts.

It wasn’t long until I was called in to my appointment.  What a lovely young chap (eek do I sound old?).   He took his time to ask me questions, dates and how I felt.  Then the manual examination.   He then asked for the senior consultant to come in and do an examination to double check she agreed with his diagnosis.

The good news is the drugs are working!

The not so good news is that the consultant said I had obviously managed to get a severe attack of this stupid disease.  In order to get on top of the internal and oral spread, I am however going to glow for a little longer as he wants me on the big girl dose for an extended time. I reduce one of the steroids by 5mg a week but in reality it’s a pretty strong dose with risks associated with their long term use and many many side affects.

Very impressed with the consultation today and feeling super grateful for our NHS.  Let’s see how I get on with all these drugs and then I am to return in April to see the consultant and check progress.

Update on my rant

How cathartic was my rant yesterday for me?  Huge.  Thanks for listening.

Clearly it also had an impact and things have moved on in just one day.  Was it because of…. My rant?  My tears?  My persistence?  Or actually good Drs but bad gatekeepers?

Very early this morning I received a call from the receptionist at my GP surgery.  Another Dr in the practice whom I’ve not seen for several years wondered if I’d got time to call in to see her.  The receptionist knew nothing more and said if it was difficult to come in to an appointment, then the GP wanted to speak to me on the phone later on today.  Of course I’d make time for a face-to-face appointment.  My appointment was booked for late morning.

During the next few hours my mind was busy wondering why I’d been summoned?  Was I to be told off for making a pain in the ar*e of myself chasing up appointments?  Did they have the blood test results and wanted to share them?  Were they able to refer me back to the dermatology specialists urgently.  Was it good news or not?

I turned up 20 minutes early for my appointment and was quickly shown down to the consulting room.

It was good news.  Very very early this morning my GP had received a call from the specialist I’d seen in January.  She was very apologetic that I’d been left out of the loop – although still insistent that I didn’t have a follow up appointment booked and nothing available until the end of March.  She was concerned that the disease had advanced and suggested I should be fast-tracked into the hospital system of urgent referrals for dermatology specialists.  However apparently she is also aware that this isn’t going to be immediate!  So my poor GP spent a while on the phone learning about the disease.  A page with handwritten notes (lots of them) and some very complicated instructions about what they’d do for me right now to control the spread of the disease and hopefully reverse the effects so far… but it’s not going to be an easy 10 days ahead.

I had further examinations, swabs taken but no biopsies at this point.

I was asked if I was prepared to be part of an unauthorised trial.  That sounds a lot worse than it is but essentially the specialist (and her colleagues) had struck upon a combination of drugs that seemed to work when administered in this way for the oral disease… however it’s unproven and might be questioned.  Absolutely I’m happy to participate – medicine can only move forward with trials.  After all penicillin and many other things we use today were discovered by mistake or chance.

My GP told me that we’re going to hit it hard by throwing everything we’ve got at it for a short period of time.  We’re going to nuke the disease!  She’s going to find out the blood test results and has also put in an urgent referral to the hospital dermatology specialists.

20 minutes later I left and headed off to the pharmacy to collect a bulging carrier bag of medicine (and I’ve still got to go back tomorrow morning as they’ve not got 3 of the prescriptions I need in stock!).

The pharmacist did query with me the ‘trial’ drugs.  They were concerned that they’d been mis-prescribed but when I explained it, they were happy to help.

So over the next 10 days I’m going to be ‘nuking’ my body with a vast array of medicines in tablet, cream, ointment and liquid format.  There are a number of potential side affects of the drugs I’m not looking forward to but hell it’ll be worth it if it works… and the potential side effects may not be a problem for me.

What did I learn today?

  • Too not give in and to pursue appointments
  • To mention ALL symptoms as they may actually be related to one illness
  • It’s worth having an annual NHS Prescription Prepayment Card (PPC) http://www.nhsbsa.nhs.uk/1127.aspx  After only today’s pharmacy visit and the many prescriptions required, I’ve already saved!
  • To thank people in healthcare.  Often situations like yesterday aren’t their fault but perhaps due to misunderstanding
  • You can’t have an ‘urgent’ referral to a GP dermatology specialist – it has to be in a hospital setting.

So here goes… wish me luck!

Itching to tell you about it…

and also need an ickle rant.  Re my autoimmune stupid f’ing thing..

Firstly it’s got worse.  I only had external rashes (OK really unbearably itchy and all over my body but…)  when I saw the specialist in January after a 2.5month wait for an appointment.  The external spots have improved but joy I now have internally.  At my January appt my specialist informed me she was relieved there was no evidence internally.  The external rash can be managed by steroid creams but internally the treatment plan of oral steroids has pretty horrid side affects and was to be avoided at all costs.

I also had blood tests in January.

Whilst with my specialist she confirmed my appt for 4pm on Tuesday 24th February.  Approximately 3 weeks ago, I noticed signs that it may have spread internally but figured if it didn’t get any worse I could hang on for the appointment already in the diary.  However a couple of weeks ago the pain and ‘affects’ of the internal disease got too much.  I visited the specialist office in the hope of seeing her briefly to be able to get my suspicions confirmed and diagnosed, manage it or at least book an urgent appt.  I was sent away by the receptionists as I wasn’t a patient there!

Next stop my GP.  I had to make an appointment… and wait for the appointment… but relatively quickly got one on 6 February and she put in an urgent referral to be seen by the specialist with the new symptoms.

16 February I chased this up.. the pain now getting unbearable at times and also having a permanent ‘scratch’ in my throat whatever I eat.  Call me old-fashioned but I’d like to get that all sorted!

Apparently my ‘referral’ wasn’t urgent.  But I got the secret code and phoned the specialist to make an appointment.  The first one being at the end of March.  I said there was little point and disappointed as I was, at least I was seeing her next week.  They then told me that there was no appointment for me next week either!

The specialist office receptionist called me back later having checked with the specialist who said she didn’t need to see me again.  Hmmm so I guess that’ll be no follow up, or blood test results then?

I called my GP to get an urgent appointment there.  I was told there aren’t any appointment for a week or so.

I called the specialist surgery back again, in tears by this time, to be told there was absolutely no way they could get me an appointment and that I should go to A&E!   (And they wonder why A&E is busy!!!!)

I called my GP back again… they manage to find me the last appointment of surgery times yesterday evening.  She was horrified.  She inspects my mouth and throat and also does an internal examination and confirms there are lesions in both areas.  She looks at her notes and sees a letter from the specialist to me following my January appointment that says she’s got an appointment with me in a month’s time to follow up.  I neither received that letter nor (I now know) have that follow up appointment.   She faxed this, with a covering note saying it is urgent, to the specialist surgery last night whilst I was there, asking that they ‘fit me in for an urgent appointment’.

This afternoon I call the specialist surgery to discover the fax is still on their fax machine, that nothing has been done, that they have no appointments until the end of March and, after quite some time on the phone, they would now discuss it with the Dr tomorrow to see if she can make time for me soon.  No urgency.  No apology.  And no reference to the letter from the specialist confirming that she had an appointment in the diary to see me!

Allegedly I’ll hear from them tomorrow.

Apart from being in pain and really not loving the side effects of the spread of this disease, I’m so very disappointed with this specialist surgery’s approach to healthcare.  It’s no wonder that people are unhappy with their NHS when things like this happen.  I’m fortunate in that the NHS have been excellent to date… but it’s individual cases like this that leave a bad taste, get reported in the press and then make people care less about keeping our very valuable free National Health Service available to all.

I know that what I’ve read on the British Association of Dermatologists website that if left untreated it can become erosive internally.  Call me old fashioned but I think this may be an extreme weight-loss program!!  And also once ‘erosive’ it may develop into cancer… been there already and not sure I really want to do that one again particularly when it may be avoided if managed by drugs and care from a specialist early on!

Rant over… but thanks for listening!

My Health Update

Well there’s good news and bad news…

The good news is that I had my 6 monthly ultrasound and chest x-ray and no sign of any lumps of mets from Phyllodes.  That’s the good news.

I also met my new consultant at the Royal Marsden.  Lovely chap who’s just returned from working in the US.  He understood the frustrations with a rare cancer diagnosis and I was delighted that he’d taken the time to read my notes and know about ME.

He kindly spent time with me chatting about how I’d been and asking if there was anything I was concerned about.  I told him that my boobs were still very painful (they always have been, but so much worse since Phyllodes, however probably nothing to be overly concerned about as I have such a good follow-up regimen).

I also showed him a rash I have had – I only showed him the rash on my wrists.  (The poor radiographer who had done my ultrasound a few weeks earlier had been utterly surprised by the rash on my boobs and armpits.  She looked genuinely shocked and horrified that I’d been waiting for several months to get a dermatology appointment…. more about that in the ‘bad news’ section.)  My consultant didn’t know what it could be but thought it may be auto-immune.  This then led me to ask him what he knew or suspected about a connection between Phyllodes and auto-immune illnesses.  His response **raised eyebrows** “that’s very interesting, why?”.  I told him that within our Facebook Phyllodes Support Group we had, and are still running, a poll asking members if they (or family members) had been ever been diagnosed with an auto-immune disease.  Although only 150odd people have responded there’s a big percentage that have a link.  Auto-immune disease is a spectrum of disease though and covers psoriasis to multiple sclerosis.

A good explanation of auto-immune disease is:

Autoimmune diseases are a large group of conditions. They include

Rheumatoid arthritis
Multiple sclerosis
Inflammatory bowel diseases
Skin conditions, such as psoriasis

If you have an autoimmune disease, your own immune system attacks your body tissues. Normally, our immune system protects our body against infections caused by bacteria, viruses and other parasites. It recognises when something foreign enters your body and can usually get rid of it before it causes you any harm. But if you have an autoimmune disease, your immune system can make mistakes. Your immune cells start to attack your own normal body cells.

I left the Royal Marsden feeling assured about my Phyllodes health but also that they are assisting me and others diagnosed with Phyllodes in researching and answering questions for our Phyllodes Support Group.  My consultant has subsequently emailed me to let me know he has chased the researcher who has a list of ‘basic’ Phyllodes questions to answer that I sent in a while ago.  The answers to these questions will allay many fears for newly diagnosed Phyllodes patients.  As it is so rare and there is little/no clinical research to rely on, I have suggested that they caveat any answers of concern with ‘in the experience of Royal Marsden’ or ‘to the best of our knowledge’ etc.  It would be good to have some answers on behalf of the UK sarcoma medical profession.  It is then aimed that the same questions will be put to medical professionals in the US, Australia and Asia.  All four sets of responses will then become available to new members of the Phyllodes Support Group.

My consultant also advised in his email that he’s asked the research team to look at any links between Phyllodes and auto-immune diseases.

The bad news…

…back to the rash.

At the end of October the soles of my feet started to really itch.  Initially there was nothing visible but soon there were small spots and dry patches.  I did wonder if I had fleas or bugs in the carpet.  I wish!  Next a sore angry rash appeared on my wrists, the palm of my left hand and both ankles.  I spent an age hoovering and rehoovering carpets, cleaning, dusting and generally convinced that it must be bugs.  Convinced that the spread to my hands and wrists must be because I’m scratching my feet.  I have been, as I’ve previously on my blog, very tired or fatigued for months/years but it had been getting worse. I know most of you see my facebook posts about my playing of tennis and going out… but you don’t get to see the posts that say I’m having an afternoon nap and didn’t wake up until midday and back in bed early or staying in most evenings.

Back to the rash.  By early November I could cope no more.  It sounded ridiculous but I was on the brink of tears trying to get a GP appointment asap for a ‘rash’.  I wasn’t sleeping well as the itching was so much worse at night.  My visual migraines returned and headaches for fun too.

My GP looked at the rash, said she didn’t know what it was and referred me to a dermatologist.  A few days later she called to say that the referral had been rejected and I needed to try a rash cream.  After a week of slathering myself in the cream, the rash had just spread and was as red and raw, if not more, than before the cream.  I booked another GP appointment.  This time she referred me again with a stronger note and saying the rash had now spread to my chest, armpits, groin, crook of my elbows and crook of my knee as well as my bellybutton… so basically anywhere that gets hot!

A few photos taken at the beginning of December:

LP - December

I waited… and waited… and chased up my appointment… and waited… and was told that my referral hadn’t worked in the system… had to chase my GP to do it again… and waited… and waited… and then called my GP again (in tears)… and waited… chased the referral service… who referred me back to my GP… who referred me back to the service… I cried… who then took pity on me and gave me a reference number, my secret NHS booking password and the number of the dermatology practice… I called them and was told the earliest appointment was over two months away… I booked it… put down the phone and cried again.

I know it was ‘just a rash’ but it F’ing hurt and believe it or not I was worried about the rate at which it was spreading.

I missed an ex-colleague’s funeral. Although the GP had said it wasn’t contagious, she didn’t know what it was and I couldn’t risk attending a funeral where other cancer patients may have compromised immune systems.   I’m sure Ally would have understood.

I was wanting friends, who’s daughter had been hit by a car in October and were ‘camping’ out in my local hospital at her bedside, to spend an evening with me so I could cook a homemade meal for them.  Again I was too scared that should this be contagious I’d make their situation worse just because I’d like to cook for them.  In the end I prepared a Friday night Indian takeaway meal of curry, dahl, naan, pilau rice, bhaji, poppadom, wine and beer.  The food prepped and cooked with me in latex gloves.  I also made some homemade soup for them for another night.  I did seem silly asking them to call round on the way home from the hospital to collect it without inviting them to stay.  I didn’t want to take the risk.  I’d never forgive my selfishness.

Apologies to anyone else I’ve not seen, rain-checked or not taken up some fun outing but I hope now you’ll understand why.

Just before Christmas I again called the GP and this time insisted on seeing my old GP at the practice, who’s been my GP since the 1980s.  He understood why I was so upset.  Looked at the spreading rash, he also said he didn’t believe it was contagious but didn’t know what it was.  He then wrote out a prescription that meant I had a drug that not only managed nighttime itching (generally eczema) but also had a sedative in it.  However he didn’t think it would cure the rash.  What a treat on 23rd December to have sleep!

Finally, 10 days ago, my appointment with a very kind dermatology specialist arrived.  I should have taken photos at this stage – definitely the worst time.  Diagnosis took just a few minutes.  Her opening line was “oooh I think I know what it is.  It’s very rare and you seem to have a severe case”.  (Oh joy another rare thing for me then!).  After consulting the computer and getting a second opinion from a colleague she told me that I’ve got an auto-immune disease, Lichen Planus.  So far my Lichen Planus (LP) is only external.

She did think that the LP may be caused by something else wrong in my body which has caused the LP to flare.  Blood tests ASAP.  Possible damaged liver or hepatitis.

I left with a prescription for some uber moisturiser and a really strong steroid cream.  She was concerned about giving me oral steroids as apparently what would be required for LP is super strong, has side affects and may be something that I have to continue to take.  So creams first.

I felt relieved to know what it was and had full confirmation that it’s not contagious.  But scared as to what it may be disguising.

As the itching was still horrendous (but being treated) my original GP also kindly did a new prescription for the sedative pills so I can sleep.

So it’s been a crazy time.  Lots of time slathering moisturiser and steroid creams on my body.  For the most part the rash is less angry, the blisters are rarer and for the most part I’m just scarred.   The worst areas are where it started and first spread ie the feet and wrists.  Some photos from earlier today:

Lichen PlanusI’m worried about some new itches and spots on my scalp and mouth ulcers and spots.  From what I’ve read these areas can only be treated orally and if it spreads on the scalp may lead to permanent alopecia.

I’ve got my next dermatology appointment at the end of this month.  Hopefully the creams will have sorted the external spots and the other itching is only in my mind!  I’ll then get the results of my blood tests too.

I’m also feeling much better than I did when first I heard the name Lichen Planus, as I’ve found a fabulous support group on Facebook.  It’s been reassuring to ‘chat’ with others who’ve been diagnosed.  For the most part they talk about it taking months/years to clear and then returning some years later.  I’ve also read about it being incurable but manageable.  It was also been reassuring to hear that there are others who have loss of balance, visual migraines and fatigue – seems this may be something to do with what I’ve been experiencing.

I have been truly fed up though.  I’m fed up of being ‘rare’.  I’m fed up of having stupid and many symptoms.  I’m fed up of worrying about going to see my GP.  I’m fed up with trying to pick my ‘worst’ symptoms to tell the GP about rather than bother them with them all in the limited appointment time.  Nothing seems to be specific or fit into the box.  I hate being a GP botherer however I’m wondering if maybe I should have been earlier ie before LP showed up as a rash.

Anyway enough for now… thought you should know.

BTW I did email my Phyllodes consultant to tell him I’ve been diagnosed with an auto-immune disease.  He’ll be adding LP to his research.

So there you go… the good, the bad and the ugly (well that’s evident from my photos!)