Tag Archives: Phyllodes

Biopsy phone call

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What a caring service I’ve received at Royal Marsden already.  This was continued this morning when one of the breast care nurses phoned to let me know the results of the pathology and to spare me another anxious weekend.

The pathology has indicated that the little dots are calcifications and are benign.  With consultation with the breast cancer team they have also concluded that the horrid biopsy took out enough of the new ‘dots’ to be able to feel that they are all of a similar nature and therefore nothing to be concerned about.  No surgery, no chemo and no radiotherapy.  She also explained that as I was already being monitored on a 6 monthly basis because of my phyllodes sarcoma, they were satisfied that should the ‘dots’ do anything odd they would be picking it up early in any event.  Great news.

I will, however, still be attending the follow up appointment on Monday in order to clarify in my mind why these ‘dots’ have appeared so quickly and reconfirm that all is OK.

Life lesson – I also realised today that I’m a creature of habit… when I am anxious or have stress in my life, I need colour… will post a picture of my newly colourful shed shortly!

Neurology results

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Some 7 months after my first neurology appointment, I’m back at the hospital to meet with my neurology consultant.  I’ve received a letter in the interim advising that the MRI was clear – a huge relief that there’s no phyllodes loitering in my brain!  But that didn’t explain why I was still having headaches – although less frequently.

My consultant was very chuffed that he’d also been able to pull my notes from the neurology department of a different hospital that I’d attended in 1991 with headaches and visual disturbances!  I have to say that I’d not been hopeful that they’d even still exist however he said that this had been a huge help to see a pattern over 20 years!  Well done consultant for finding them.

He confirmed that the MRI hadn’t shown anything untoward and the blood tests hadn’t shown anything awry either.

I told him that I have been following his advice of dissolving a dispersible aspirin under my tongue when I get a headache or visual disturbance.  It does work however I was concerned that at times I needed to take these regularly.

His conclusion was that I was someone susceptible to migranes but whom didn’t have particular triggers.

His advice was to continue to take the odd aspirin when needed.  However with a caveat; should the headaches get worse then I should return to him when he would probably be prescribed daily migrane medication.  It was suggested that this ‘prescription’ should be taken with Dom Perignon – hehe he obviously knows my penchant for bubbles!

Sarcoma Consultation

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This afternoon I met, as planned, with my sarcoma team for the results of my six monthly checks from the perspective of phyllodes sarcoma.  They will, of course, be involved in reviewing the results of the biopsy however were keen to let me know what they know, so far.  Good news, there was NED (No Evidence of Disease) in my lungs from the chest x-ray and no evidence of any sarcoma growth visible from the ultrasound and mammogram.

I’ll best get on with healing from the biopsy which now the anaesthetic is wearing off is mightily ouchy! Thank heavens for paracetamol.

Next appointment 22nd July.

Biopsies done… next?

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I’m not sure that I slept for more than 60 minutes in a row last night and was utterly exhausted when my alarm eventually went off.  To be fair I was also being kept awake by my friendly fox, AKA Foxy, who regularly visits my garden and was clearly seeking attention.  I think he’s cross with me because I threw away his favourite toy on Monday (an old Croc shoe)… It was totally tatty and in bits due to his favourite game when he picks it up in his mouth and flicks it over his head only then to retrieve it and do it all again!   Last night he brought me an old tennis ball and then spent quite a while throwing it at the wall just below my window!

Anyway I digress.  I arrived on time for my appointment this morning and was expecting a mammogram with a vacuum assisted biopsy being taken whilst my boob is clamped in the machine.  However I was told that I would be having another ultrasound, further mammogram pictures and then the ‘clamping’.   Wow what a long procedure this was to be.

As before the ultrasound didn’t show up any ‘dots’.  Next off to the ‘boob squishing’ where the dots were clearly visible.  Next they lay out a bed beside the machine where I would lie on my side whilst my boob is clamped tightly in place and pictures taken.  The pictures, fortunately, were clear and I was in the right position for the next part… the biopsies to be taken.  The Dr injected anaesthetic into a number of places and whilst it took effect he lined up the biopsy syringe and switched on the ‘vacuum’ so I knew what noise to expect.

Despite all the anaesthetic and the very clear explanation of what would happen, I wasn’t ready for the reality!  Blinking bananas that was truly painful.  Essentially a larger core of tissue is drilled out and then suctioned up.  They took a few of these and next had to check they had some of the ‘dots’ in the samples taken.  If not, we’d be doing it all again!  Next they insert a small piece of titanium as a marker to show exactly where the biopsy tissue has been removed from and so that future scans show this easily.  Hmmm I would have thought I’d have had platinum and the anaesthetic should have been champagne but I guess they’re cutting back on the NHS.

Fortunately they got enough and the ‘needle/straw’ was removed and I was released from the mammogram clamp.  Only 15 minutes in the clamp.  I then saw the hole that was left… I guess I’ll have a marker of my own to look at every day now!

The tissue will be reviewed by the pathology team to see if there’s anything untoward in it.  It could just be ‘chalk AKA calcifications’ but I won’t know until it’s been under the microscope.

Crazily I thought that I’d be getting the results when I meet with my sarcoma consultant this afternoon but apparently not.  They’ll be giving me the results from a sarcoma/phyllodes perspective ie chest x-ray, ultrasound and mammogram results but NOT the pathology results from this morning’s biopsies.  I’ve been given another appointment for those results on the 22nd July.

I guess there’ll be a few more sleepless nights!  Hello Foxy, fancy a game of catch?

I’ll know soon what the ‘dots’ are…

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OK so they promised to call this afternoon.  Why is it that ‘this afternoon’ is more than just a specific time?  I’ve been on eggshells all day however have put it to good use – 3 lots of washing (done and dry), walk in the park, grocery shopping, front garden weeded, yukka trees pruned and hedges tidied up, lawns mown, jasmine tied back, back garden weeded and cleared out, patio hosed down, pathways swept and tidied, roses deadheaded… etc!  Amazing how much you can achieve when you’re trying not to realise the time is passing and the phone isn’t ringing.

The phone eventually rang at 4.30pm and the lady from the Marsden introduced herself.  It was clear that she wasn’t sure if I knew exactly what had been seen on the scans nor what was ahead.  I told her I did and suddenly the call became so much easier!  Upshot is that they’ve made an appointment for me on Thursday to have stereotactic biopsies under mammogram in the morning and then see my sarcoma specialist in the afternoon for the results.

How efficient is that?  Both appointments in the diary.  The specialists have seen my earlier scans, I’ll have the results delivered to me by my consultant with the pathology already completed.  And all that within a week since the ‘dots’ were first found on my scan.

6 monthly checkups

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A wonderful visit to Belfast to see Johan Gant and Nikki Tweed become Mr and Mrs Gant on 4th July.  Fabulous day and so pleased Johan was able to source and I was able to secure flights to enable me to be there between medical appointments.

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This morning, I was up and out of the hotel in Northern Ireland at the delightful hour of 4.45 A.M.… a time that I’ve not seen for quite a while!  Quick dash to the airport, a small flight to Gatwick, train to Clapham, bus to the Kings Road and then a short walk to the Royal Marsden Hospital.  Whoohooo I even managed to do all that AND be early for my appointments.

You see it was my six monthly checkups today.  My July regimen is ultrasound, mammogram and a chest x-ray.

There has been some discussion within the medical world that checkups are unnecessary, worrisome to the patients and costly to the NHS purse.  It’s been suggested that perhaps cancer patients should have less frequency in checkups.  Or no checkups at all BUT rely on patients raising concerns or with ‘quick access’ back into the system should we find any lumps.  This CANNOT happen.

I’ve been fabulously fortunate in that my medical teams have advocated for me to have a thorough checkup regimen agreed.

Today I was grateful for their professionalism and care of my health and these regular checks.

My mammogram slides have shown some spots that need further investigation.  The radiologist doesn’t believe that they are more Phyllodes tumours but suggests that they may be a scattering of DCIS (ductal carcinoma in situ). Because of the location of the ‘spots’ she has suggested that I come back for a stereotactic biopsy where they will be able to suction out several tissue samples.   I will hear next week about a date for this biopsy but expect it to be in the next week or so.  Following the biopsy, the samples will be sent to the pathologists.  Then the MDT (multi-disciplinary team) will assess the results and advice what the next steps are.

I’ll keep you posted…

Penny Brohn Approach course

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The Living Well course that I attended in December was really wonderful. I can recall driving to it (from Tish’s funeral) in quite a state but driving back home after the course feeling ready to take on the world, start a new chapter and with many positive actions to implement… sadly these were crushed when I discovered that I’d been burgled.

I wanted to capitalise on the benefits of the Living Well retreat. I was aware that despite my best efforts I’d not truly been able to implement all the actions I’d intended since I was still shocked and ‘disturbed’ from the burglary. I booked up a 4 day retreat, The Approach, in Bristol and hoped that this would recharge my soul and spirit again.

As always, I went alone. Penny Brohn do allow you to take a partner, companion or friend with you. In some instances I’m sure it is pivotal to the best results for you. Sometimes we’re all very good at putting on a brave face or ‘coping’ and perhaps don’t say what we’re really thinking for fear of upsetting someone close. Certainly over the 4 days I was to see some changes in individuals and their partners but also importantly in their relationships and understanding. I have always been acutely aware that a cancer diagnosis affects many more than just the person diagnosed. Often in places and people you wouldn’t expect. How does a colleague feel about sitting opposite an empty desk whilst your in treatment or away for hospital visits? Perhaps a neighbour who doesn’t know what’s going on or wants to help but doesn’t know how. Your parents, children, siblings etc with whom often you bravely say ‘I’m fine’ when really you’re neither fine nor are they ‘allowed’ to show their own emotions and concerns. It truly is a much more complex picture than we given credit to.

I was anxious when I arrived at the Centre. Unsure what the week really held for me. What emotions and feelings would arise. Would I be able to open up when needed – I know I’m often a closed book to my own emotions and tend to hide my real feelings behind humour. Who were the other people on the course?  Would we get on?

I really needn’t have been anxious at all.

OK it was tough at times but hey, isn’t life tough sometimes?
OK so there were places in my head that I didn’t want to go or recall but don’t we do that anyway when we’re brave enough?

For many reasons, not least the confidentiality of the other people at the retreat, I won’t go into the detail. However I’d like to give you an outline of the week.

The days were broken into many different aspects. We did some exercise; imagery; relaxation; meditation; group work whereby we were encouraged to talk about our experiences, concerns and worries; nutrition lessons; one-2-one sessions with a GP; one-2-one session with a nutritionalist; one-2-one session with a healer; went for walks; small group sessions so that ‘partners/friends’ were given the opportunity to speak freely about their concerns away from their partner/friend.

The programme is busy but varied thereby allowing time to reflect on earlier sessions.

In the evenings we were exhausted. I sleep so well in my Penny Brohn hotel… it truly is luxurious too. But on a couple of evenings there were optional things to do. One was to have a short meeting/chat with Pat Pilkington, one of the founders of the centre. She told us her story. She spoke of her meeting Penny Brohn and their friendship. She spoke of her husband who has passed away but clearly she adored, loved and was/is utterly devoted to. An incredible lady who despite being of a ‘certain age’ was keen to let us know that we could contact her at any time by email and she would respond within 3 days to each and everyone of us. Such a generous lady… of her time, her love and her experiences.

Another evening there was a Biodanza class organised for us. No ordinary dance class and we needed to keep any inhibitions at the door! Not my kind of thing but I tried to enter into the spirit. Lots of people did. Some stayed firmly seated on the sofas. But for a short while we were all up and dancing. I think the teacher wanted us to be mindful i.e. quiet and reflective… however because of the wonderful sense of humour and vivacity in the group there were bursts of laughter through the lesson 😉

Healthy eating meals together at breakfast, lunch and dinner. During which time we all had plenty of opportunity to talk and get to know one another. What an amazing group of people with so many life experiences before cancer diagnosis, experiences due to a cancer diagnosis and an incredible amount of positive aspirations and dreams for a future. By the end of the week I felt blessed to have some new firm friends in my life.

British Sarcoma Group conference

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I was invited to attend this year’s British Sarcoma Conference in Nottingham.  The British Sarcoma Group is the professional association of the specialist clinicians, nurses and supporting professionals who treat patients with sarcoma in Great Britain.

On arrival it is evident that there are a great many professionals attending the conference.  It’s wonderful to be invited as a patient advocate with personal experience and to be amongst professionals that want to understand ‘the journey’.

Given that the conference is one day only, I’m pleased about the opportunities to speak with the professionals ‘offline’ ie outside of the workshops.   Often shorter conferences don’t allow time to speak delegate to delegate as the agenda is often squeezed up.

However equally there are a number of workshops that I’d like to attend and have to make a difficult decision between them to fit the agenda!

Screen Shot 2014-08-20 at 12.39.25Screen Shot 2014-08-20 at 12.39.36The first workshop I attend is ‘Your treatment is over, now what?’.  Andrew Shepperd first explains in brief his journey with Ewings Sarcoma and also about his time ‘after treatment’.  He is a Trustee of the Bone Cancer Research Trust and is able to liven the workshop with discussion from his experience of other sarcoma patients and carers.  As you know with an organisation like ‘Living Beyond Diagnosis’ this is a passion of mine and I know from my experience and that of speaking with others that the ‘now what’ is a huge aspect of a cancer diagnosis that isn’t tackled or spoken about.

A few of the points raised were:

  • A sense of isolation when treatment finishes;
  • Friends and family (all good intentioned) tend to stop asking how you are.
  • Reframing the illness by looking at ‘problems’ in a different way.  One person spoke of their recurring dream where they had been ‘watching’ their child’s wedding day but they weren’t present ie implied they were dead.  However had learnt to ‘reframe’ it by putting themselves on the front pew in the dream and then learning to redream it regularly as if they were there.
  • A need to notch down new events and future dates ie ‘investing’ in a new car; child’s first day at school; planning and booking a future holiday.
  • Ask for help earlier about anxiety and worry.  If you ask early it won’t be a surprise if you ask again when and if you need it.
  • Guilt of being a ‘survivor’.  This was a lengthy discussion and would need pages to discuss here.  Suffice it to say that a great many people in the room felt ‘guilty’ about surviving when others they met during treatment/surgery didn’t.  Dealing with the ‘why me’ can be extremely difficult.
  • Counselling.  It was interesting how many hadn’t thought of counselling.  How many had asked for counselling but had had it declined.  How many had received counselling also.  It was felt that this should be more obviously on offer to all diagnosed patients in the UK and not restricted to just when in treatment but an ‘open door’ policy be activated.
  • We also discussed ‘incurable -v- untreatable’.  A big difference in the two and little understanding the general public as to what either really means.

My second workshop was ‘Key facts in decoding sarcoma research – lay to expert, in 45 minutes flat‘ by Chris Hiley.

No mean feat to explain any research project from bench to bedside in 45 minutes but Chris was able to do so.  Also in a very humorous fashion!  Chris spoke about policy and funding applications.  About how decisions were made as to what would be funded and the difficulties sarcoma had in funding from main sources due to the rarity of the cancer type.

My final workshop was the ‘Patient closing plenary – Summarising and action points – patient delegates‘.

This session was led by representatives from Sarcoma UK, Bone Cancer Research Trust and GIST Support UK.

An incredible amount was discussed, ideas banded about with reference to spreading awareness of sarcoma with GPs, primary and secondary healthcare but also within the general population.  We discussed at length the new initiative by Sarcoma UK of the ‘golf ball pilot project‘.

There was also discussion regarding the many types of sarcoma and how it was imperative that we work together rather than pit against eachother.  However priorities should be directed not necessarily to the loudest voice or largest number of sarcoma.

 

Overall I was pleased with the content and action of the conference however felt that the sessions were slightly more rushed than I would have liked.  They were all large topics and it was obvious from the lively discussions that there was a great deal to talk about and perhaps dig deeper in depth of many of the points raised.  It was great however to have many sarcoma specialists in each of the workshops, taking notes and seeing how something that they may think quite small in a person’s journey can actually be the opposite and be challenging to moving forward.