Last Friday I was told that my smear test result showed rare and severe high grade abnormalities in the endo cervical (glandular) region. When I asked whether it could be cancer I was told that it might be. I have never been so terrified in my life and my first thoughts were that I am going to die and not see my two young children grow up.
I am booked in for a Colposcopy next Tuesday. I have been doing a lot of googling on endo cervical cancers and reading all sorts of horror stories so thought I'd put a message on here to see if anybody is going through similar things to me.
Has anybody else been told they have rare and severe high grade abnormalities in the endo cervical (glandular) region? What's frightening me the most is that I have read that smear tests are not designed to pick up endo cervical abnormalities which are in the cervical canal, so the fact that these cells have been found on the cervix could mean that, if it is cancer, it has begun to spread? I'm experiencing a dull ache in the pelvic area along with sporadic stabbing pains. I've had a small amount of irregular bleeding in the last few weeks but nothing much.
I have had pelvic aches and pains for years and but tests and scans have never come up with anything. I also often feel as if something is pressing on my bladder and am always dashing to the loo, have been reading this could also be a sign of cancer. Arrrgghhh I'm driving myself mad with worry. I know I just need to wait for my colposcopy appointment but it's hard not to worry.
Oh Pug Dog I'm so sorry to read this! As I read it I literally felt all your panic and worry :( I havent had glandular changes so I can't help with that section of things but I didn't just want to read and run.
Jo's is a brilliant place (much better than Google, but lets face it, we all do it!) and I'm sure you'll find someone here who's experienced the same thing. I'm sure from reading around on here over the past 6 months I've seen other ladies who've had glandular changes picked up via smear test so rest assured you're not alone.
I know it's easier said than done (I was a mess between my phone call and my colposcopy) but try your best not to worry. Yes it could be the worst case scenario, but it also could not be. And, even if it is the worst it's likely to have been caught at a treatable stage, especially with the advances cancer treatments have made in the past few years.
Try not to think about aches and pains and things, I know once I even thought about going for my smear test I suddenly developed a lot more aches in my belly and twinges around my hips - and now I've had my 6 month check up letter through these have mysteriously reappeared. The human mind is brilliant, but it's also a (scuse French) bugger for amplifying things and making you feel worse. I know the waiting is torture but try and distract yourself beause all the worrying in the world won't change things or make things go any faster.
Hopefully you'll get some replies from ladies who've had glandular changes and they can put your mind at ease a bit. but do check back in after your colposcopy and let us know how you've got on x x x x sending you lots of hugs! x x x
Thank you so much for your reply beckycarlos, your message was so positive.
You're right, worrying myself sick isn't going to change anything or make my appointment come round any sooner. To be told you have something rare and severe isn't the most comforting thing in the world! But this website is so positive and a great source of comfort.
Hey pugdog11, i was found to have high grade CGIN following a LLETZ last august, from what I undertand these are just changes to the glandular cells that are a wee bit higher up, my consultant said that these were removed through the LLETZ, and he will carry out a colposcopy and a smear at 6 monthly intervals for up to five years. Again this is only based on my understanding but i think that the changes are treated much the same was as the changes on the cervix, ie the CIN 1,2 and 3. So it may be the case that they will carry out the LLETZ treatment at your appointment then the biopsy will clarify what they are dealing with.
try not to worry, the part that got me was when he said it was rare, to be honest there hasn't been much research carried out with CGIN, so there is no set way of dealing with it, they had discussed with me that I may require a cone biopsy if the cells reoccur, and I am just waiting for my result (which I have found to be the worse bit, the waiting). Defo stay away from google, this is the best site i have found, everyone is really positive and more importantly it isnt bogged down in doctor talk. i found it was helpful to write down questions i had, and took a pen in for my appointment, its a lot of info to try and take in.
try and stay positive and keep us posted about how it goes, oh and sory if this is full of typos, i am doing it on my phone so i cant see what i am writing!
So sorry to hear what you are going through at the moment, you have come to the right place.
I had a 6 month follow up smear at my GP surgery in December 2012, exactly a week later I was called by my GP who confirmed I needed an urgent colposcopy as they thought they had found cancerous cells, this shocked me as she wasn't even referring to pre-cancerous cells at this point! I went in to speak to my GP as I preferred to talk to her face to face, rather than over the phone. She showed me the smear test report which mentioned 'possible glandular neoplasia' - I'm sure that's spelt right but don't quote me! It referred to glandular cells higher up.
When I went for the colposcopy (3 days after my smear result), the consultant was concerned by what she thought were severe changes so she took a couple of biopsies and told me my results would only be a week, she also took an endocervical biopsy of the glandular cells further up.
Fast forward 6 weeks and my results finally arrived, it was a long wait after been told I only needed to wait 1 week. I made numerous telephone calls inbetween! My results turned out to be inflammation and hormonal changes only - My results went to the MDT meeting with a few specialists as they were so different to what the smear test and colposcopy reported. I've just to go back for another colposcopy in 6 months.
I worried myself sick and I know it's easier said than done but as the other girls said, try stay positive and don't worry yourself too much. Keep yourself busy until your colposcopy and hopefully you'll be able to come away feeling more positive :)
Take care and keep in touch, let us know how you get on next Tuesday.
I had the glandular type of changes and although mine did turn out to be cancer, my treatment has been successful so I wanted to try to give you some reassurance. Yes, this type of change is less common but it still comprises 10-20 % of case so it’s not very very rare really.
It’s not more aggressive or dangerous than the regular type; it can be a bit more tricky to initially pick up on a smear, but it does get picked up routinely (thank goodness). Diagnosis and treatment for both types are more or less the same, although they do need to check out what’s happening a bit higher up in the cervix when they take a biopsy. It’s not fun, but it’s all doable. The main thing is to find out exactly what’s going on so you get the right treatment though, right?
When you go for your colposcopy appointment, you’ll have a chance to ask questions. Give some serious thought to what you want to know and write your questions down, and write the answers down too. Do some reading up but instead of Googling, I’d suggest looking at the information on this site, Macmillan and Cancer Research (if you want the science stuff). I tried to stay away from everything else - there’s a lot of nonsense out there, especially on some American sites.
I’m not going to tell you not to worry, but do try to distract yourself if you can. If you spend too much time thinking about what might happen, you can drive yourself nuts. Best of luck and do let us know how you get on. xxx
Hello i have had high grade cgin in 2010 , was completely terrified and cried non stop for 2 weeks - was so shocked. I had examination at coloposcopy clinic and had loop excision - results from that shown no cancer but high grade cgin at margins . Went on to have cone biopsy . Have had 3 smears (6 monthly) since my treatment and all normal so far - thankfully . I know it's a huge shock but stay positive , there is treatment available and it's pre cancerous changes that can be removed, remember that it's not a diagnosis of cancer - it's why we go for smears and its been found and can be treated
Hi everybody. I just wanted to say thank you for all of your positive messages. It's so comforting to know you're not alone going through these scary times!
I go for my colposcopy appointment tomorrow and I am nervous I have admit, keep thinking of worse case scenarios when I know I should be thinking positively! I've got terrible back ache which I am not sure is due to anxiety or if it is a genuine symptom of cc...you see I am a complete worrier.
Thank you all again for your support and positivity xxx
Hey Milkbottle, the colposcopy went ok thank you. Biopsies were taken and I now have to wait up to 3 weeks for the results...the waiting is torture! Am also booked in for LLETZ on 12th March (6 days before I'm supposed to be going on holiday, do you think it's safe to travel abroad after treatment?).
glad to hear it went ok, I agree the waiting i have found to be the worst bit, I am waiting for the results of my six month check up, feels like ages and its only been a weeK .You should be fine to travel, but there might be some bleeding, also I was told only to shower not bath for two weeks, and not to swim because this can increase the risk of infection. I bled lighty for about two weeks, but this may have been my usual period as well, then came the "coffee granuel" discharge but this only lasted for a couple of days, this i was told was normal its just the burnt cells coming away or something, the thing is everyone seems to be different, if it is worrying you, maybe try and reschedule for when you get home, i made the mistake of going to the gym because I felt fine, but a few lunges told me otherwise, for something that is so hidden our wee cervixs seem to be a bit tempremental! Xxxx
