Recent diagnosis

[travellingguide]

My story began in 2015 when I found a lump… had various biopsies and was diagnosed as having a Fibroadenoma - fortunately benign.

Various mammograms in the intervening years - Breast lump clipped so they could monitor the size of it and all okay. The decision was made, rightly so I believe, to just leave it and monitor it.

Fast forward to November / December 2019 when I had a new lump (or perhaps part of the old lump) - the size of an apple (but in 2 parts) and shaped like a hippopotamus… and rapidly growing a pushing through the skin within a very short space of time.

Biopsies done - 3 samples - and deemed to be benign.

Due to the size of it… and subsequent diagnosis of it being a phyllodes tumour it was deemed that surgery to remove it was the only option.

To be fair to the medical team dealing with it all of this has happened very quickly and their care towards me has been outstanding.

Three weeks ago I had surgery to remove the tumour and due to the size of it there seems to be quite a sizeable scar which I’m sure given time will settle down.

Ive read the various articles on Dr Google and the shooting pains, tingling etc are all quite normal.  It’s taken longer to get over it all that I had thought but the follow appointment yesterday I thought would just be a formality, take out the stitches - May be have more frequent mammograms etc… After all, the biopsies prior to surgery had shown the tumour to be benign.

so that’s where my head was yesterday when I went to get the dressing and stitches removed.

so… imagine my surprise when I spoke to the surgeon who told me that my tumour - a phyllodes tumour is quite rare and when it was removed and sent off to the pathology to be completely checked it was found to be ‘borderline’.  ie. has cancerous characteristics is how they define it.

now it has gone for further specialist testing - again I am told because it’s quite rare to seek advice of what they do next.

I’ve never used a forum before - Not really sure how much they are read… but I’m currently in the ‘processing’ of this info stage. I thought my normal life wd be resumed and now I’m told I may have cancer.

the surgeon is talking about possibly 3 options - all vague at this point as they need the specialist report back before they can make a decision regarding the next step - to go back in and remove a bigger margin of tissue, a full soft tissue removal (that seemed another way of saying a mastectomy as the oncologist would do the surgery) or watch and see with annual mammograms.

As these tumours are not so common they don’t seem to have so much experience of dealing with them.

also, and this is the scary part - they can’t be cured with chemo or radiotherapy… so if it has spread then there is no cure.

now my worry is that it has spread… given the fact that it was found 5 yrs ago and thought at that time to be something else.

has anybody else on this forum any experience of these phyllodes tumours?
what happened in your case?  I realise that each case is different but… it wd be nice to know of someone else who has had a similar experience.

thank you

[Jaybro]

Hi travelling guide

I haven’t the experience of a phyllodes tumour but I’ve had a large fibroadenoma, which was removed long ago, and more recently a skin break-out in my areola which eventually revealed two tumours, despite a clear mammogram, so I can sympathise. I found it took several weeks for the surgeon to accumulate all his information, each time, more surprised by the new histology reports. This was after telling me ‘there’s nothing to cause any concern as far as I can see.’ Oh those two sweet weeks of optimism before the bombshells dropped one by one, week after week. It’s cruel in a way but also I guess it made the shock easier to bear, spread out as it was.

One thing I would advise, though it may be too late, is to not use Dr Google. It can’t take your specific situation into consideration, or your emotional state which I think is half of the burden of cancer. It’s often out of date, simplistic or complex beyond our lay comprehension. The result is emotional mayhem, loaded with what ifs. Have you been told by the specialist that it would be untreatable or is that from Dr Google? It can make a huge difference. So please trust your specialist/oncologist. Even if they have limited experience of the condition, they will soon use their networks to establish the best way forward, with chemotherapy or radiotherapy, or both, as with some breast cancers. Ask your breast care nurse some of your questions - again, if she doesn’t know, she will make it her business to find out for you. It’s by far the safest way to find out and will give you greater peace of mind. 

This period of uncertainty is horrid but looking back at what should have been done (like with my clear mammogram 6 months earlier) is pointless - water under the bridge  - so try not to speculate or second-guess the experts. Focus on your emotional wellbeing with relaxation, mindfulness, distraction, whatever does it for you, because you are going to need as much emotional strength as you can garner to get through treatment if it is bad news. Take very good care of yourself and I hope things turn out well for you x

[pinkyfleur]

Hi there 

Just sending you a hug & good luck powers with your appointment & I do hope the consultant appointment goes well with your biopsy results.

it may be suggested a mastectomy to get a clear margin.

keep thinking positive vibes xx