I was diagnosed with grade 1a1 on my daughters birhday in nov. This was by the routine smear test…
So had first Lletz and then had to have a 2nd lletz to clear margins around the microscopic cancer.
On friday, they told me another microscopic cancer was found but its all gone now and i have to have hysterectomy within 4 weeks to make sure it doesnt come back…
But i have had no scans, no mri, no tests…
Anyway, i still have lump in groin, dragging feeling in groin, aching, numbness in leg, blood in urine…
So if the cancer is all gone now like they said, and its not in lymph nodes… Why am i still feeling this…and how do they know its not in lymph nodes without doing any scans… And if cc is slow growing why the rush to do hysterectomy?
I am struggling to keep it together…
I only known 2 weeks but my doctor wudnt give me a stage without a pet scan i had already had a mri but apparently a pet scan is better if you are unsure ask them wish i could be more help x
Hi Paula
Sorry to hear your news.
I think as they have done the LLETZ they can tell your stage by looking at it. I had no scans and was just told after my cone biopsy which was under GA. Obviously I am no expert and it would make sense to ask them if they plan to do any scans at least to put your mind at ease.
All my treatment happened very quickly. Maybe they just want to be sure and perhaps have targets to meet if you are with NHS?
Hope it all goes well for you on the day.
x
on both lletz procedures the gynaecologist said nothing to worry about and couldnt see anything.. But histology picked up cancer... Ive asked for scan but they said unnecessary..
as im under urology they said they might do one, but dont know when this will happen..or even if it will be before hysterectomy cos its a different department..
I asked gynaecology for scan and they said its unnecessary.... Feel like im going round in circles with it all..
Hi Paula :-)
Welcome to the forum. I am so sorry to hear about your current distress. Certainly what you are telling us about a complete lack of scans sounds most unusual, but perhaps that is explained by you being under urology. Why is that do you know? Surely you should be under the care of gynae-oncology? Are you somewhere relatively remote that simply does not have those facilities?
Have you got a specialist cancer nurse? If you have, then sit down with her and talk it all through. If you haven't, then get onto Macmillan and see what they can do to help. You shouldn't be being kept in the dark like this regardless of NHS targets.
Be lucky :-)
Tivoli
i had blood in my urine for past year after they put camera in bladder and found nothing urology discharged me, but i kept on at go and they sent me again, but urology cancelled my appointment for unknown reason and i had to wait again.. Anyway saw them again 2 weeks ago and they said they might do a scan, its not definite...
i dont know what type of cc i have.. I dont know if i am am u der gynae-oncology... All i know is i have seen the gynaecologist who did colposcopy in oct...is she the same? It is her who says that all of my symptoms have nothing to do with c.c and therefore wont investigate..
i am going to get onto PALS this morning...
Glad you are going to get onto PALS. I thought if cancer was detected it was routine to have some sort of scan to be able to grade the cancer?
Hope you get some answers soon and I wish you allthe best with any upcoming treatments xxx
Yes i thought it was routine too... And im especially anxious as they have found cancer in 2nd biopsy and still not offered scans... Didnt get hold of PALS today as it was closed, but will do tomorrow...
also very nervous of hysterectomy...so paranoid about risk of blood clots afterwards...
Hi Paula, sorry to hear of your diagnosis. I had cervical cancer stage 1a1 nearly 2 years ago and they weren't going to scan as apparently the chances of spread were next to zilch but because of how anxious I was they did give me a pelvic mri scan which was clear. This was hugely important for my mental health as I wouldn't have been able to just accept their word, I needed them to check and felt hugely reassured by it. Tell them how you feel and contact your nurse, hopefully they can arrange it for you x
