Biopsy phone call

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!

Sarcoma Consultation

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?

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…

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.

Wimbledon Fever

I’d been talking about trying to get down to Wimbledon this season to see some tennis.  Silly really that I don’t go down every day as it’s so near to me – but it’s been 8 years since I last went along, queuing late afternoon and getting into see some fabulous games late into the summer evening.  However I was spurred into action by my friend Ismena Clout who posted on her blog a ‘list for living‘ and number 34 on the list was attending Wimbledon.

I have recently started playing tennis again at a local club (although not for a while since my fall in Australia and my somewhat ‘oddly shaped’ knee and as part of joining up for the coaching I was encouraged to become a member of the LTA British Tennis.  What a bonus because they sent me an email to say that although I wasn’t eligible (as such a newbie) to enter the first Wimbledon ballot, I would be eligible for the second ballot.  At 10am on 7th June I was therefore ready to go…  How surprised was I to see that there were actually tickets available AND for the final day of Wimbledon!

Little did we know but Andy Murray would also be appearing on the last day having got through to the men’s final.

What a fabulous day. We started off with a little light refreshment (errr bubbles) and strawberries & cream.  Most of our day was spent in Court No 1 (where we had tickets) and watched the final of the boys juniors (both boys will be adults next year so looking forward to seeing them get through to the Men’s Final next year); Invitation Senior Gents Doubles (with Pat Cash who I last saw at Wimbledon in 1985!); Invitation Ladies Doubles and then Invitation Gents Doubles.

BUT we did leave Court No 1 and headed out to see if we could get a spot on Murrays Mound during the epic Men’s Final… boy was that placed absolutely packed.  So we headed off to Court 2 where they were showing it on big screens.  The atmosphere was A-mazing… even more so when we saw Andy Murray WIN!  The first British man to win for 77 years.  Thank heavens – the nation were behind him… as long as he won!

A few pics for you:

Wimbledon with Ismena Clout July 2013

6 monthly checkups

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…

Marsden March

4,500 people signed up and took part in the Marsden March today.  Some chose to walk the 5 mile option and others walked 14 miles.  Eeek I had signed up for the 14 miles and managed to coerce a few friends into walking with me too.  Double eek when I tell you that it was utterly pouring with rain, the parks muddy, biting wind, squishy underfoot and pretty cold too!  Oh joy.

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I had thought that my calves/shinsplints/ankles would have played up but they behaved.. my blisters however didn’t.  The final few miles I was walking on my heels through the rain and mud!

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But we did it… and more importantly we raised (the 4,500 of us) over £1.18 million for Royal Marsden Cancer Charity.

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So… what do you say?  Will you do the Marsden March in 2014?  Click here to sign up.

All change

In my posting in July I mentioned that I had asked my wonderful consultant about referring me to The Royal Marsden hospital’s sarcoma team for my follow up surveillance.

At 2pm today I had my first consultation appointment with the sarcoma team at The Royal Marsden. The waiting room was absolutely packed and I waited nervously for my name to be called.

I was concerned that they wouldn’t take my case on but that I had sort of ‘discharged myself’ from my previous consultant’s care. I was worried that they would perhaps think I was over anxious about follow up scans or perhaps that they would recommend I stay with my existing hospital. I was concerned that although they are a centre of excellence for sarcoma in the UK, that the person I was assigned wouldn’t know about Phyllodes – after all there are over 70 different sub-types of sarcoma.

So despite my waiting only a very short time, I was more than a little anxious. Had I made the right decision in asking my lovely consultant to refer me? Would he take me back if I hadn’t? What would I do if they didn’t take me on as a patient? What would I do if they changed my follow up surveillance schedule in a way that worried me more?

Phew, I’ve been called.

I first met with the nurse who explained what would happen and who I would be seeing. She then left me in the little consulting room whilst I waited for the Registrar. Seemed like ages and once again all my anxieties were kicking in. The Registrar then arrived and ran through my medical history and also asked about my siblings, parents and grandparents’ medical history. She also told me that my case had been discussed at today’s MDT (multi-disciplinary team) meeting in detail.

And then, she asked the question that I was most worried about answering… why was I here and what did I want from the Royal Marsden? So I told her why (see previous post) but I also told her about our Facebook “Phyllodes Support Group” and what I’ve been doing with Living Beyond Diagnosis. She asked a few more questions and then said she’d return with the consultant.

I was then left in the little consulting room on my own… and yes the little voice in my head was once again telling me that they wouldn’t have me as a patient etc etc.

I was terrifically grateful when the door opened once more and the Registrar came back into the room accompanied by a consultant. He introduced himself and we spoke briefly about me, my medical history, why I requested the referral and my previous care.

He then asked more about the Phyllodes Support Group and was terrifically impressed with the number of members, the information and experience sharing, the documents and reference papers that have been collated and also the polls and data that we were collecting and sharing within the group. He also said that he felt that should we, as a group, wish for some assistance or input for the group, then I should just ask and he would try to facilitate this for us.

I was also able to tell him about the report that is currently being finalised containing a section about Phyllodes from the contact I have met at two Cancer data conferences in the UK. He would love to see a copy of this when published.

It goes without saying that I will be looking at what input will be useful from RMH and also what we can provide to RMH from the group… certainly it would be fabulous to have a medical facility, who specialises in sarcoma, to take an active interest in the group members and their health. Watch this space!

We then returned to my health and monitoring for recurrence or metastases from the excised malignant phyllodes tumours. We agreed that my previous consultant had done an excellent surgical job in removing both of the tumours and then ensuring that sufficient clear margins were obtained. He agreed with the advice that I should not have any adjuvant radiotherapy at this time. He also agreed that the screening regimen implemented in my previous hospital was the best to quickly identify any local recurrence (together with my own personal checks). We then spoke about any requirements for any additional screening/surveillance for possible metastases, particularly with regard to the malignancy and mitoses of the excised tumours. He suggested and has requested that I have a 6-monthly chest x-ray at the same time as my existing scans ie annual mammogram with intervening 6 monthly ultrasound of both breasts.  This chest x-ray will be looking for any traces of naughty cells in my lungs.

I left RMH this afternoon feeling that I had made the right decision to ask to be referred. Perhaps I should have made the request at an earlier stage and saved myself some levels of anxiety along the way.  But I also know that I couldn’t have managed to do that before now.

I am, of course, sorry that I won’t be hearing my, now previous, lovely consultant refer to me as ‘Miss Lumpy Bumpy’ again but I’m so very grateful for his care up until now and can only say that whoever the patient is who gets my slot on his busy schedule is a very very lucky lady.  Perhaps I shall pop in with a box of biscuits for him and the team when I’m next passing my old hospital.

So that’s it. Next scans/checks are in January. Between now and then I’ve got a number of cancer conferences to attend, not least the annual Sarcoma conference which this year is in Italy. They were asking for patient advocate attendees to speak at the conference and I’ve put my name forward.  I would love the opportunity to tell them all about our Phyllodes Support Group and also about Phyllodes itself, in the hope that perhaps more medics and researchers will be more aware and knowledgeable.