Borderline Phyllodes

Hi

I saw my GP on 4th February and was referred for investigation/follow up after discovering a breast lump that appeared from nowhere and had grown to 3cm pretty quickly. 

Although my health trust is adhering to the 2ww guidelines, it was still an awful wait for my results following a core biopsy on 17th February. 

So, when on 4th March, the consultant said it was good news, in that it wasn't cancer, but was a Phyllodes tumour, I was somewhat taken aback last Friday, when the GP copy report landed on my doormat saying it was actually a borderline tumour. 

Originally, surgery was pencilled in for 30th March and I've spoken to the breast care nursing team a couple of times.  There's still a real disjoint in quickly progressing the required pre-op tests.  What is really concerning me now, is surgery is looking as though it will be deferred, whilst this dratted tumour is still merrily expanding and growing nodules on nodules, (became obvious over the last couple of days). Being of slight build, I don't have the biggest of boobs, thus, the thought of this tumour growing significantly larger before surgery, worries me and I'm hoping it doesn't end up being too radical an operation.

  • Hi LC Clogg

    Welcome to the forum and sorry to hear that you have a breast tumour and that your operation might be delayed.  The waiting for something to happen is the worst part of the process.  However once everything is arranged you should start to feel better.

    Wishing you the best of luck with your operation when you have it.

    Best wishes

    Daisy53

    Community Champion Badge

  • What required pre-op tests do they want? You are right in pushing for surgery to go ahead as planned as these types of tumours do tend to grow quickly. I'd start making some real noise about it, so that they start moving with whatever it is they want to do prior to surgery. 

    This tumour needs to be taken out soon regardless of whether it is benign or not. Have they spoken to you about your surgery options? 

  • Hi  Daisy53

    Many thanks for your lovely, comforting welcome, which I very much appreciate.

    The not knowing and waiting is the worst bit, as you say, albeit I have unwavering support from those close to me.

    I think what is making things worse for me is memories of what my sister endured when she was diagnosed with breast cancer back in the early 2000's, even knowing treatment has come on in leaps and bounds since then.

    Many thanks once again for your kind words.

    Best wishes

    LC

  • Hi

    Many thanks for your reply and kind, supportive words. 

    All I was told during my follow up/results appointment my op would be day surgery scheduled for 30th, the lump would be excised and the bleeding stopped,  (Alarming prospect on its own).

    I've been pushing as hard as I can to get things moving and in the right order, because as I say, the approach to the cardiology checks they are keen to undertake, are, to my mind, slightly disjointed.

    I completely understand why these checks (echocardiogram/ECG/cardiologist triage) need to be completed first.  I was diagnosed with a form of microvascular coronary spasm in 2016, (ironically following a long stint of severe work related stress) and take low dosage daily meds, which have, since then, remained unaltered.  In all that time I've not had any real problems/attacks.  I was super fit prior to being diagnosed in 2016 and still maintain a decent fitness level, although mountain climbing doesn't figure in my daily activities!

    It's frustratingly crazy, because the echo was completed last week and the cardiologist triage appointment is scheduled for this coming Sunday. 20th, but the ECG appointment was originally set for 25th, which will likely need to be reviewed by the cardiologist. Fortunately, I've been contacted this morning about the ECG being brought forward to tomorrow.  

    As it is, I still have to wait for a further clinic appointment, which to my mind is unlikely to allow time for the usual pre-op blood pressure/health history stuff, or for the 3 day lead on Covid testing prior to admission on 30th, had I not pushed hard to get the ECG brought forward. 

    I feel through all this, the left hand just hasn't known what the right hand was doing and although the breast care nurses are brilliant, bureaucracy is thwarting the process.

    I've likened it all to an ant trying to push a boulder up a mountain - that's what it feels like .... Rolling eyes

    Kindest regards

    LC

  • I know exactly what you mean, and I am glad things are finally moving. About covid testing: 2 days are enough, at least as the protocols in my area go. When you go in to see cardio, perhaps you can ask the nurse for the blood test labels, so that you can go get these done on the 28th (the 27th is a Sunday; I am assuming no phlebotomy department on that day, but a competenet nurse could do it if they really want it 3 days in advance.)

    Why the further clinic appointment? Once echo, ECG and cardio are done, blood labels in hand, all I can think of are the pre-assessment questions, which can be done any time by your nurse, and the covid swabs, which again can be done on the 28th by your nurse. What am I missing?

    I think you still have a very good chance of having the surgery on the 30th, but from what you are saying it sounds like it may require more of that "ant pushing a boulder up a mountain" action. Frustrating, annoying, and shouldn't really be this way, but I gather that right now the focus would be on making things happen. Once done, you may want to consider lodging a formal complaint regarding how things were handled.

  • Hi

    Once again, thanks for such a lovely supportive reply.  It certainly makes a difference when someone understands the frustration.

    The cardiologist triage is a telephone appointment, hence, why I believed having the necessary results to hand would be beneficial for both of us. 

    I have to go back to clinic to discuss the recommendation from the cardiologist and maybe anaesthetic considerations, as well as sign the consent form, (oddly the consultant surgeon had the form to hand on results day, ready for me to sign Nerd) and another reason why I got the impression surgery was reasonably urgent?  

    Good idea about pushing to get the Covid swab done as part of the pre-op, if, and its a BIG IF, in this neck of the woods, the pre-op is scheduled at the right time.  It's no great issue to isolate post PCR, as long as its not for months Stuck out tongue winking eye  

    Again, thank you for your support, advice and thoughtful, practical words.  Just what I needed and very much appreciated.

    Best wishes 

    LC

  • You are very, very welcome, and thanks for explaining. I hope you will update here when things happen, and I really hope surgery goes ahead as originally planned!

    By the way, signing consent can be an odd thing. I signed my own forms with the surgeon, then I was asked to sign again on the morning of surgery even though they had the original form.

  • Hi

    Thank you and I'll certainly provide an update on how things go, even my experience only helps one person navigate the intricacies of treatment and offers some small comfort. 

    I think time tends to drag once you are diagnosed, because if I am typical, my mind says the 'booby beasty' needs evicting ASAP Wink

    Fingers crossed

  • think time tends to drag once you are diagnosed, because if I am typical, my mind says the 'booby beasty' needs evicting ASAP 

    Yeah. A lot of us have voiced similar sentiments about waiting.

    As for evicting the intruder, I agree with your assessment. It is frustrating to see again and again the need to keep advocating for ourselves at a time when a lot of us are not feeling at our best. The "system" has a lot to answer for, and a lot to improve.

    I hope that appointment on the 20th produces the needed outcome.

  • Thank you.

    Appointment on 20th cancelled late last Friday, as cardiologist caught Covid.  Thus, a different cardiologist has me listed for telephone triage 23rd instead.  Methinks Covid is likely to impact a lot of NHS staff in the weeks ahead.

    So, it's a case now of just waiting for the cardio sign off.