Borderline Phyllodes

First of all, I am relieved that the sarcoma team has finally taken over. Second, when you make the complaint, I hope you remember to include the fact that the local BC team did not bother presenting a complete case to the MDT where the sarcoma team rejected. You are within your rights to demand an explanation as to how that happened.

From what you are saying, sounds like it would be far better if all of your treatment from now on happens within the sarcoma team's physical surroundings. A BC team that were capable of omitting information once are capable of omitting it again and I wouldn't trust them to report in a complete and timely manner back to the sarcoma team. This is a valid point that you can raise with the sarcoma nurse next time you speak to her. The other point on this is that this is now not only a physical issue, it is a mental well-being issue, which would have direct effect on the physical side too. You can and probably should let them know that you are not willing to go on living with constant anxiety, wondering what their next f%£& up is going to be and what the imapct it would result in on your treatment and health.

Did the sarcoma nurse say when you can expect to start treatment, or at least when she is going to be back in touch? Did she give you her contact details?

I really, really, really hope things start to go better soon, and by that I mean not only on the medical side but before that, the feeling you are describing. I know it, and I wish you didn't have to go through it.

Hi - sorry if I've not been as clear as I could have been.  Nonetheless thank your for your sensible words and kind advice.

To clarify; my case had been referred by my local care team, initially to a Sarcoma CoE who reviewed the details and then referred the case on to a second, well regarded Sarcoma CoE with greater experience and thus expertise in dealing with phyllodes tumours.  Unfortunately, there was a 3 week delay, mainly caused by the local breast team registrar failing to check my case details had been received by the initial Sarcoma CoE.  Rectifying this faux pas/mistake required much 'behind the scenes' effort by a number of BCN's from across the various care centres involved along the way.

The Sarcoma CoE currently tasked with managing my treatment found at their MDT last week, there was insufficient histology detail to adequately assess and contribute toward developing an appropriate treatment plan for me.  As such, I have now been assured everything is in place to provide a comprehensive plan and I am expecting a phone from the specialist sarcoma nurse next Thursday morning, (following the Sarcoma MDT on Wednesday) whereby she will give me an idea of when I will have an appointment for them to see me and take things from there, although in the meantime I am able to contact the Sarcoma nurse whenever I wish to do so. 

I have a real belief this new CoE will efficiently and effectively ensure my best interests are at the heart of everything they do, with me and for me - they are renowned for it.

As for my 'roller coaster' mental state, I can only say it's a good thing I have goodly degree of stubborn resilience, a very supportive network around me and a strange sense of humour, which means I will bounce back from this most traumatic of experiences,

I live by the premise that; when its harder to go on than to give up, you know that's the time to throw in the towel. Not giving in yet, there's still a bit of froth and fizz bubbling away in my glass!

Thanks for explaining all of this. You may have been very clear earlier; I am still going through some degree of brain-fog after chemo so I may have missed something earlier.

I am glad you are in good hands now and I hope that after Thursday things will start moving along rapidly. As always, I will be keeping an eye here to see if you have posted any updates. 

Hi LC clegg I'm glad you are hopefully on the right path to get sorted. I have been very lucky in that the sarcoma team I was referred to saw me after3weeks and mine has been straight forward since. My cat scan was clear and I start radiotherapy  on the 28th July for 6weeks and then it will just be monitoring with scans for first 2years every 3 months then 6monthly up to 5 so fingers crossed it has gone for good .I am under royal Marsden and they are great. I wish you well and hope everything goes ok for you x

Hi - it's fine and very understandable, so thank you for even taking the time to reply when you have your own health considerations to contend with.  You are so very kind.

Hi - I'm so pleased to hear your excellent care continues and your CAT scan is clear, and, from what I've been advised by my CoE, the surveillance plan post any treatment will follow much the same path as yours.  It's very reassuring to know. As it is, I watched the C4 programme last night about Royal Marsden, and it is obvious what fantastically professional and caring staff they all are. 

I hope too, that your journey goes OK too. 

Just a quick update: I have an appointment early next week at the CoE Sarcoma clinic, where from what I've been advised, various options will be discussed. 

As far as I understand, radiotherapy and mastectomy are on the table, (sorry for the pun).  I know what my preferred option would be, but this may change once the benefits and drawbacks are fully reviewed?  Fingers crossed there is enough time during the appointment for me to cover the thousand question list I've drawn up, but I suppose none will be 'new' questions. 

Watch this space.

I feel hugely relieved for you, so I can only imagine how you must feel. I don't think you should worry about 'if there is enough time...' , you sit there and ask all your questions. Goodness knows, you've waited long enough to get some answers! I hope your appointment goes well 

Very good news. As for time during the appointment, just stick yourself to that chair until you are satisfied all of your questions and concerns are answered.

And.... watching! 

Best of luck with your appointment next week.

Daisy53