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I did a google search & a similarly titled thread, started by StarStuff, was too old to reply to... I'd love to know how you've got on & how you are!
Anyway...excruciating pelvic pain & multiple ultrasounds & exploratives later... I get a call Monday morning to attend the gyn consultants office that afternoon. Obviously worried as I assumed no hear meant all ok.
Anyway, his words : "Its not cancer, but its not good."
Culminating with suggestion for hysterectomy... I'm only 44.
The pathology report says no evidence of atypia or malignancy. The thing is, he literally dumped this information on me, & was full of foreboding, but with my "cross-examination" was unable to clarify things for me.
So I thought it all sounded abit arbitrary & nebulous.
"No, not arbitrary, this is serious."
How on earth can they do that?!?
I have to leave the hospital consultant office full of fear & tears, not knowing what is happening within my innards.
I've read up on lots of super-medical stuff, & found you guys & other forums... have an appointment with my own GP (doctor) on friday morning where we can hash this out.
Due for another hysteroscopy & endo biopsies - they wanted to shcedule that asap, but its my birthday month & I really really do not want to be hanging out & fearful of surgery thanks!
So I';ve done as much reading as I can do on "Complex hyperplasia w/o atypia" (& dense stoma & benign polyps).
I am familiar with the cycles of the uterus, so wishful thinking makes me hopeful that they've just biopsied me on a "waxing phase", like the moon, getting bigger in preparation...
I have also read some things which scare me, ie patchy biopsies, resulting in extreme & opposing results to initial tests, & that comp hyperplasia increasing chances of the "C" by 20%.
I just don';t think its on for a surgical consultant to leave a patient with a jumble of med-speak to walk on the street freaking out.
Love to all.
(I'm in London, UK by the way, so even if it is very slow, it is free)
I'm sorry your doctor didn't do a better job of answering your questions. It seems like a lot of surgeons really aren't good communicators. Make a list of questions to take with you when you see your GP.
I'm one of those people with a patchy biopsy. My endo biopsy prior to my surgery didn't show cancer but it turned out that I was Stage 3a. My gyn told me that endo biopsies only miss 5% of the time. I don't know how accurate that is because it seems like a lot of people had experiences similar to mine. The one thing to remember is that the people whose biopsies showed no cancer and turned out to be accurate wouldn't be posting here.
I think it's important to follow up on these test results, as you are doing, but don't let someone rush you into a hysterectomy until you fully understand why they're recommending it.
Was the surgical consultant a gynecological oncologist? I'm not sure exactly how things work in the UK, but in the US, that's who you would want to see if gyn cancer is suspected.
Good luck with everything. Let us know what your GP has to say.
Yes, some of the bedside manner could use a little work.
If you can see a gyn/onc (gynecological oncologist), that would be your clearest bet for clarification and treatment options. They are the experts, and we strongly recommend them for gyn cancer/pre-cancers. Whomever you see, definitely write down any questions you have and have things explained clearly so you can make an informed decision.
We know this is all scary stuff, but take some deep breaths and one step at a time. We're glad you found us!
thanks catlove & monami - appreciate your being there.
it is scary stuff indeed. & i've had a major freak out all week. but as you say 'one step at a time'.
my GP this morning wasn't really familiar with histology terminology. she put the gyn consultant's foreboding approach down to bad comms skills, & (worryingly) that he didn't know fully what he was talking about (what? how could that be). (&no he wasn't a gyn/oncologist - he was a gyn surgical consultant) but what he did tell me was that I would have received a call from oncology immediately if the histology warranted it. I guess from their medical POV, things are clearcut - if its bad throw it out. but to me, seems too much like - have a head cold? cut off the head.
I wonder if I am able to access a gyn/oncologist actually?? this is all done on National Health Service here in UK, so it's kind of a 'dont call us we'll call you' vibe... I will push for clarification definitely.
My GP has told me to relax & perhaps look at it from the POV that it - whatever 'it' is - has been caught early, & will be monitored.
so still in the dark really, & will do further probing & information seeking on Monday from the hospital admissions person.
really perturbed about all these reports of 2nd biopsies revealing an extreme result. how could this be, the uterus isn't that big? & from my Path report they seem to take a fair wad of material (35x25x6mm gross).
My GP has said that its a slow grower & not something that can flourish in a matter of weeks. But the gyn consultant seemed pretty keen to get me in asap for more biopsies... oh dear.
They will install this thing called a 'Mirena' also, which releases progesterone & has fewer side effects than ingesting a pill.
you can tell that I'm running & re-running this ...its 3.30am here & I do feel abit restless..
tomorrow I will have acupuncture also.
Thanks again dears - w/keep you posted. Enjoy your weekends. x x