Questions and Answers

Today I’m anxious and I’m quite sure my blood pressure is through the roof.  I can’t help but wonder if the pathology is in and if I’m going to meet with a new consultant to hear results that I don’t want to hear.  I know that my head has been in a terrible place this past few weeks but is my head right?  I left heaps of time to get to the hospital and arrived in South Kensington over an hour and a half before the appointment was due. 

South Kensington/Chelsea was a little bit of my stomping ground many years ago and a lot of stories/memories (fortunately) have been long forgotten about those times.  I wandered slowly towards the Royal Marsden past Pond Place, where I had my 25th birthday party in a basement bar – what a fantastic night (remember? – Jax/Melissa/Mark/J.  Sadly the bar is long closed and in fact there are weeds trailing down the steps and if it hadn’t been freezing and icy, I’m quite sure I would have heard the tumble weed roll down the roadway (instead of the ‘Oi – I fink it’s closed’ from the workman the other side of the road!).  I looked back up the road and remember evenings at The Collection or lunches at PJs with the med teams of the Chelsea & Westminster on Sundays… ooh so many good times.  

I haven’t mooched around this area of years and it was with mixed feelings whilst looking back upon some wonderful times/memories and looking/hoping that there’s a future which will enable me to create more wonderful memories. 

After a short wait in the hospital waiting area of the ‘Wallace Wing’ (errr did they name it in anticipation of my arrival?), I was taken into a consulting room and left to strip off to my waist and put on one of those gorgeously sexy hospital gowns! After an examination I was told by this Snr Consultant that she was extremely impressed with my surgeon’s handiwork and was satisfied from this ‘manual’ exam that there was no worrying lumps or bumps.  She did also confirm my anxiety about there being a difference in size after the two operations but that could be fixed at a later stage, if I wanted.

She then asked what questions I had and looked a little askance when I pulled out my folder and notebook!  When I apologised about having the questions it was wonderful to hear her say that I should ask questions and should make sure that I have the answers and should research Phyllodes tumours and should take control and own my health.  Having a rare cancer has taught me that I cannot sit back and take comfort in previous cases or well-trodden medical  surgeries or treatment paths – there are none.

So for other Phyllodes survivors the answers I got were:

Sufficient clear margins – There is currently no recommended measurement of sufficient clear margins however the margins that were taken she believes are adequate.  4mm with a clean surgical removal is sufficient.

Hormone negative receptors, do they have any bearings on whether a recurrence will appear? –  I discussed that I had read that there may be a link between survivors with negative hormone receptors (ER-/PR-) being at higher risk of a Phyllodes tumours.  My consultant advised that, for Phyllodes, she is unaware in the UK of this being researched and pathology is not tested for hormone receptors.  However she will pass this information to the research teams and suggest that any Phyllodes pathology is tested to see if there may be a link. (There are links with other breast cancers and hormone receptors)

Pathology – I neglected to ask if my pathology had in fact been re-examined however am satisfied that should they have felt it necessary they would indeed have ensured it had been.

Stabbing/pinching pains, why? – My concern was that the pains I’ve been experiencing are sharp and similar to the pains I was getting when I had the tumour (although the skin isn’t hot to the touch now).  I was worried, of course, that the tumour was back and growing again.  Or that I may, as other Phyllodes sister had been told that I had ‘Mondor’s Disease‘ which although sounds scary will pass in time with massage and pain relief.  However the consultant told me something that I really didn’t know – breast tissue is similar to a memory foam mattress (my interpretation not hers!).  Apparently breast tissue will remember what a feeling/pain was like and mimic this at a later stage.  In my instance where the tissue is reshuffling and the scar tissue shrinking, the most recent memory feeling it has is the pain I had during the tumour growing and therefore has learnt to replicate that pain.  Apparently women who breastfeed can often experience the feeling of breastfeeding many years later.  For me and I’m sure others who have undergone soft tissue surgery, it’s worth remembering and although it doesn’t negate the need for vigilance to check for recurrence, it may be just remembering the sensation of pain.

Pain also in the left breast – The consultant was able to assure me that there were no lumps or bumps to be concerned by (from the manual examination) and perhaps the pain is simply hormonal or the left breast has gone out in sympathy with the right!

Recurrence – We discussed the potential of a recurrence given that I had a malignant Phyllodes tumour.  What are the odds and are there any details on how long I may have before a recurrence occurs.  The consultant said that the first two years were the highest risk and therefore we would ensure that there was an adequate follow up program in place to pick up any oddities quickly and also put my mind at rest that I’m not waiting long.  She also assured me that should I feel worried by pain, lumps or generally, then I should call them immediately and would be bought in for consultations and testing urgently.

Radiotherapy – We discussed further my thoughts on pursuing radiotherapy at this point.  Since my original request for this to be considered I have researched this further and also spoken at length with the radiotherapy consultant. 

One very interesting point that I had not been aware of is that radiation on a soft tissue sarcoma may induce further recurrence.  There are no stats for this but it is believed to be a concern therefore I’m now not convinced that this really would give me a 20% better chance.  I have chosen to leave radiation until I really need it and to consider further surgery, more drastic surgery, before any radiotherapy is undertaken.  

Grading of malignancy – In the US Phyllodes tumours are graded, in the same way that other breast cancers are graded, however in the UK I have found no grading or staging.  I asked what grade/stage my malignant Phyllodes tumour was and if this classification may have any bearing on any potential recurrence.  I was told that grading/staging is not done in the UK.

Metastasing – In the UK they believe that there is a very low risk of a Phyllodes tumour metastasing to other soft tissue areas of the body.  Sadly, I do know Phyllodes survivors in the US who have cancers in other areas however wonder if these cancers are related to metastasing.  With the regular checkups and me being vigilant I am hopeful that this will not affect me.

Tamoxifen – There is a school of thought that Tamoxifen may assist with Phyllodes survivors (or other soft tissue sarcomas) to reduce the risk of recurrence.  This is a drug used regularly for breast cancer survivors.  We discussed this as a potential option for treatment for me however there are a number of side affects including blood related issues.  I weighed up the potential reduced odds of recurrence -v- my concerns about having any more blood clots and decided that the risk, for me, was too high to try for a maybe.  However for others this may be of interest.

Is 10/mm2 mitotic count high? – The mitotic count in the pathology of the first excision indicated that it was 10/mm2.  My research identified that this was high and in data received from Australia indicates that once again this may be an indicator of high chance of recurrence or early mortality.  I was assured that this wasn’t the case as far as the UK are aware and satisfied that, once again, with close surveillance and regular checkups I wasn’t going to let it either!

Did the reconstruction during surgery 1 create a new network for the Phyllodes tentacles? – In short No.  It was the right decision by my surgeon and has meant that the cosmesis is retained as best as possible.

Mastectomy or more surgery – No further surgery is required at this time (unless I chose an elective mastectomy).  However should there be a recurrence or any concern about my future prognosis then I should, as well as I can, prepare myself for a mastectomy.  I was ‘warned’ that if anything was discovered I would be whipped in and my breast whipped off before I could blink, therefore it is advisable for me to consider what I would do, how I would handle it etc etc and to be prepared.  I believe that I’ve done all the preparation I can do until it actually happens.

NHS classifications for Phyllodes – I discussed my concern that the NHS does not classify Phyllodes within its database and more particularly that we surely can’t confidently say this is a rare cancer or doesn’t affect many in the UK if there’s no way of recording or reporting on it. I mentioned that I had established the coding in the International Classification of Diseases and wondered if/how I go about getting it considered for inclusion in the NHS coding.  My consultant agreed that this was a ridiculous situation and would do her best to ensure that the NHS were provided with the correct coding and include this as soon as possible.  I will, of course, ensure that my medical notes are updated to reflect the code as soon as it is within the NHS database.

M9020/0 – Benign – D24
M9020/1 – NOS – D48-6
M9020/3 – Malignant – C50-

I was also able to advise the consultant that I was to attend the Conference in Atlanta and she was keen that I should feed back to her anything I felt of interest/research/investigation from the Conference or my own research/enquiries. I would like to think that I can bring back to the UK information from the US and that this information is disseminated to medical staff so that the awareness of Phyllodes is raised.  If more Phyllodes tumours were diagnosed quickly, patients may only need one surgery (instead of the standard two) and more research may be given to this type of tumour.  She also advised that she would email me with any information she finds in her efforts.

I left the Royal Marsden with a spring in my step and feeling positive about my future.  Nothing had changed since my going in but I had been able to ask questions, be given honest answers and then to formulate my own decisions based on good advice.  I knew when I left the hospital that I cannot say I’m cured or I’ve got the all clear but what I can say is that I’m in control of my future and my care management.  I have the support and, I believe, high regard of the medical teams that I’ve met – to me this is important as it has meant that my concerns are taken seriously and they know that I don’t panic about my diagnosis and prognosis but rather want the evaluate and understand my health plan.

If nothing else, I would like to think that my journey and inquisitive approach to my diagnosis has, in some way, helped raise awareness, reporting, data and research but also provide a supportive hand to others.

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