I have just been diagnosed with this condition and I understand that it is actually quite rare.
As such, I am struggling to find any ‘plain english’ info about it.
The consultant we saw is unfortunately a very ignorant and arrogant man who, after a two hour wait and having offered not even a token apology, pronounced that my diagnosis was ‘fine’ and tried to usher me back out of the door without even an explanation of what the diagnosis was! I managed to get him to write it down for me (he was rude enough to suggest I wouldn’t manage it myself!!!) and he has decided that, having removed a tiny portion of it for testing (which was done pre-Xmas) he is going to leave the rest as it is because it would be too invasive to remove the rest of it.
We are left with no idea as to the size and spread of it, prognosis for the future (ie, am I at increased risk of b/c, will it grow bigger again, what should I look out for, etc) and was equally dismissive of the even bigger lump which has appeared since the surgery and the pain under my arm (he says it’s not a seroma, as we first thought, but ‘probably just bruising and lymph nodes reacting’.
I should be thrilled and excited but instead am left feeling rattled and unsure. I am relieved of course that the condition is benign but the attitude and lack of information has left with me more questions than answers and no sense of reassurance about his management of my case. (He had earlier pronounced that he takes the view ‘if you can see it, remove it’ when it comes to lumps etc.)
Has anyone any information on this condition? Should I be pushing for removal? What should I do about the continued pain, discomfort, swelling, etc - how long should I leave it before assuming it should have settled. How should I feel about this ‘thing’ which is now being left in me but will react at least twice a month to hormonal changes and may/may not increase my chances of developing something more sinister.
The full diagnosis he gave (but only when pushed) was:
- Columnar cell changes
- Pseudo-angiomatous stromal hyperplasia
Your advice, as ever, would be much appreciated.
Phoenix
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