Borderline Phyllodes

Hi Mush

Apologies for not replying sooner.  I do hope you've had the news you were expecting/hoping for?

Following the initial 'thunderbolt' of diagnosis, the situation can feel overwhelming and become tinged with frustration when treatment doesn't move at the pace subliminally expected, but below are just a couple of things that helped me.

• This forum .... I need say no more.
• When attending appointments, remember no question is a stupid question if it helps settle your mind.
• Bestowing a nickname upon my tumour somewhat diminished it's potential threat and allowed me to rebuild my sense of humour, a  fundamental element to dealing with the situation, (but that's just my personal perspective and may not suit everyone). 
• Mentioned earlier in this thread, it's OK to indulge in some 'legs in the air, ranting' moments.

Take care.

Thank you - very helpful indeed.  

I asked my consultant if there was anything current by way of research that I could contribute to and was advised not.

Still worth diving into, in my opinion. From experience, it can sometimes happen that a piece of research has not yet crossed their desk, or that they may have missed it for other valid reasons. Anything you might find could help you and others, so I hope any hunt you embark on yields results.

A bit of a surprise, but I am being referred to a Sarcoma CoE who have more experience/knowledge of dealing with that rarest of beasts, Phyllodes.  It's a belt and braces approach by the Breast Care Team, methinks?  Whilst I am trying to keep an open mind, I can't help but feel slightly off kilter, as we all do, because of the unknown.

I will of course continue to document my 'treatment' journey for anyone visiting this forum, who may find themselves facing off to their own Bob the Tumour?

Hi LC clogg I'm glad you have been referred. I was also referred to expert at the royal marsden.I saw him on the Friday and he was very reassuring. I had my masectomy on the following Monday. Very quick but so lucky as well. Mine had grown  to 10cm they removed part of my muscle as it had attached itself to it  and one of my lymph nodes even though it had showed clear on my mamogram .I wa glad to get rid of it because mine to wa s 3cm when I found it.at the end of march. I too have small boobs and t became very uncomfortable and skin became sore. I found putting something cold on it helprd.I'm currently recovering from my masectomy and just have a little discomfort.consultant said op had gone well .I am now waiting to see him in a couple of weeks .if I do need anymore treatment it will be radiotherapy .they don't usually do chemo as they don't often respond to it. I hope you get sorted soon and wish you well.

Thank you for sharing your experience, which is reassuring somewhat, but sorry to hear you needed radical surgery. 

My tumour too was very sore and near the skin surface prior to my op and was lucky enough to have a brilliant surgeon from the outset, with the 'belt and braces' approach also covering a CT scan, of which I'm awaiting the results being relayed to me. Radiotherapy and chemotherapy have been mentioned, albeit new therapies are constantly being developed and utilised, and far more rapidly than previously too. 

I have my fingers crossed that the future holds nothing other than close, regular monitoring/surveillance, for both you and I  and all those who find themselves travelling this road.

Stay strong, stay positive and thank you once again for sharing, I wish you well too. 

Well, this has been a never ending saga of  bumps and puddle filled potholes during my travels along the treatment cart track.  My tumour has gone from just being described as a phyllodes, to borderline, to borderline malignant  to being treated as malignant. 

I sincerely hope my experience is as rare as a phyllodes tumour? (Think I read somewhere, it's 2 in a million cases?)

Earlier this month, as I've mentioned previously, my case was to be referred to a Sarcoma CoE.  After radio silence of nearly 3 weeks, I chased this up a few days ago and it's a good thing I did, because, it seems the nominated Sarcoma CoE never received my details etc., which makes me question whether the NHS so stretched that whomever was responsible and who no doubt spent much time organising the referral, didn't have couple of minutes to check with the receiving team? 

In essence, nothing has progressed, albeit, my case was, after a lot of effort from my BCN and the CoE MDT co-ordinator, discussed at the Sarcoma MDT yesterday.  Unfortunately, I've now been told, they, (the CoE1) are seeking a 2nd opinion on further treatment from another Sarcoma CoE, which to my mind is screaming the words 'more delay and unnecessary stress'.   

I know it is 'belt and braces' stuff, but at the moment, I just want to call my care team and tell them I'm discharging myself, I've had enough!

I have a lot to say about this, but the need to keep to clean language is stopping me from telling you what I really think. I am mainly referring to the failure in communication between the teams.

About the medical presentation, I am not surprised they are behaving this way, considering how rare it is, but with three weeks already lost to administrative negligence they really should get going! 

Hi

Thank you for your reply and it is appreciated beyond words.

I've calmed down a tad now and so has my poor hubby. It's wonderful how tea and a good cry can soothe and re-energise the mind.  I may be one of the 'cry and crack on gang' but it's the people around me, whom I feel for, as they are also being 'milled' to the max on this journey.

My medical team can state as often as they like, phyllodes is such a rare tumour, bit it didn't hold me back when I told my BCN, my 'phyllodes challenge' is 'an opportunity for learning' and if it doesn't benefit me at the moment, then maybe their next phyllodes patient will have an advantage, in that they will be managed differently?  

I'll update here as soon as I have any further news, providing this old cart horse hasn't run amok and kicked it's shoes into the next field in the meantime ... 

You are very welcome. I hope you will update soon, keeping an eye here for when you do.