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.