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.

4 thoughts on “6 monthly scan results

  1. I really hope so too gorgeous girl .
    Just starting my second tour as a tour manager with Shearings and am on my way to Eastern Europe. First one was a Bordeaux cruise.
    Enjoying it but it is work not leisure.
    Love xxx

    • Hi Darl,
      But hopefully you’re also getting a few excursions of your own to see these fabulous places? Hmmm what happened to retiring?? You’d be a fab Tour Manager. xxx

  2. I too have history of phyllodes tumour and im waiting on surgery for a second. I also have severe autoimmune neuro problems and would be very interested to hear about your symptoms.sadly my breast surgeon doesnt seem to have much knowledge in phyllodes.

    • Hi Rhonda
      I’m so sorry to hear you’re also diagnosed with Phyllodes and autoimmune problems. As Phyllodes tumours are rare and often discovered in the breast in women, we are often treated by a breast surgical/oncology team. This is good for surgery (as the surgery is the same but with much larger clear margins required) however the team with the knowledge about the tumour (and advising on aspects like margins) should be sarcoma specialists. In many cases, the tumour isn’t fully identified as phyllodes until excised therefore for many patients a second surgery is required to obtain clear margins. At that point, the patient should be referred to a sarcoma specialist.

      From your comment, Rhonda, I’m presuming you haven’t been referred to a specialist for soft tissue sarcomas? Firstly, I’d request this is done. I’m not sure where you are living but there is a list of the soft tissue sarcoma specialist centres in the UK at http://sarcoma.org.uk/specialistcentres.

      I am treated at the Royal Marsden in London (as are quite a few others with Phyllodes). The whole sarcoma team know and understand Phyllodes and I also know several people who are treated by different consultants there who have had excellent service. You can (and should) request your care is transferred to a sarcoma specialist centre for any future treatments/surgeries but also your follow up diagnostic care.

      If you are on Facebook, we have a Phyllodes Support Group (https://www.facebook.com/groups/PhyllodesSupportGroup/) which has nearly 1,000 members from around the world diagnosed with Phyllodes.

      I hope this helps. xx

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