A little scary that I find myself here. Following an hpv smear result, a colposcopy and then a lletz procedure, I have just been diagnosed with adenocarcinoma of the cervix. I am numb and in total shock. An mri is being arranged for Tuesday. I have had no symptoms at all.
Has anyone found been in the same situation? All I can think of is my little boy and wanting to be there for him.
I am so scared of what the results might be.
Hi, I have been told I have adenocarcinoma also but I havent been told I'll need an MRO scan, have they given you a staging?
Its totally normal to feel numb and in shock. I have 3 little boys and I feel much the same
Hi Vla
I was similar to you no symptoms and just went for a routine test. I had CGIN cells and high risk hpv show on my smear so was sent to colposcopy.
I was expecting to have the lletz procedure done and that be the end of it but that was when my tumour was found. I had a lletz biopsy done on the day and then had to wait for results.
A week later I was told over the phone it was cancer and was sent for an MRI a few days later.
2 days after my MRI i got my staging which was 1b2 adenocarcinoma and I am now booked in to have a hysterectomy on 25th May.
I havent got any children so I am also going through a rapid course of IVF treatment at the minute to remove my eggs before the hysterectomy.
The waiting really is the worst part, but all i can say is that they move really quickly so you should have full results soon.
Try and keep yourself busy over the next few days, i found keeping myself occupied gave me less time to think about it all.
Xxx
Thanks for the replies. They mean so much. I don't have a staging yet, I guess after the mri it'll be another wait for the results and the next steps.
I know I am so fortunate to have my little boy but I keep looking at him scared for the future.
rachey - what are your next steps?
amy my heart goes out to you xxxxx
Hi Vla
I had exactly the same as you - routine screening test, colposcopy, LLETZ biopsy, confirmed adenocarcinoma. All in the space of the last couple of months.
It was a total shock and I can completely sympathise with how you are feeling (I have a nearly 2 year old little girl).
Waiting for the MRI and the results was tough. Really tough. All I can say is what others on here said to me - try to keep yourself busy with whatever you can and when you find yourself worrying about what might happen, try to focus on the most likely outcome, rather than the worst case scenario.
And keep telling us how you're getting on.
xx
Thanks for your reply. What stage are you at now?
I'm trying to keep as busy as I can!
xx
Hi Vla,
How did you get on today? Did your mri go ok?
Xx
Hi Amy
thanks for thinking of me. The mri was very long, I think the scans took around 90 minutes. Apparently they get the results of the mri on Friday but my consultant has said I also need a pet scan and until I've had that and those results, I won't know anything.
the waiting is so hard, and I have no idea when the pet scan will be.
how are you getting on Amy?
victoria xxx
Hi Victoria,
Yeah mine took a while and im so bad at keeping still haha. Hopefully they wont keep you waiting too long for the pet scan, fingers crossed they get that done next week for you and then give you some answers.
Your right the waiting really is the worst bit, i felt exactly the same. I was just glued to netflix to keep me occupied.
Im ok thank you, had my last fertility scan today ready for egg collection on Friday. Then i can concentrate on the cancer treatment.
Keep me posted on how you get on, always here if you need a chat/rant ?
Xxx
Hi. Has anyone had a PET CT scan? Mine is booked for Wednesday 12/5. Is it claustrophobic?? I struggled with the mri but at least my head was out. I'm starting to panic about this next scan!
Hi I have been diagnosed with the same and no staging my mri isn't for two weeks which I am very worried about.
mine was also picked up on a smear test my previous was negative (or maybe it wasn't?)
I have had no symptoms at all.
My mind is all over the place but found this forum to try and get some proper facts and not Dr Google everything. I was under the impression they would be able to tell you the stage with the cell found?
Hi both
I was diagnoised last year with adencarcinoma.
I get really claustrophic in scans as well and the MRI is the worst for me. The PET CT scan is just a round circle machine going over you, both your head and legs are out of the scan. You get a dye injected in you about an hour before and you relax in your own room then you get taken into the scan, it doesn't last as long as a MRI either. If you have had a MRI the PET CT is easy.
With regards to staging, I had to have a MRI and hysteroscopy for staging although I think they usually just do a MRI. They do this to see how far the cancer has spread, so with the MRI they can see if it's in your lymph nodes. All my smear tests were clear which is apparently normal for adencarcinoma as it grows further up your cervix and can't be picked up on a smear. I had a smear audit and they showed no mistakes were made on any of my smears.
Hi Besty
You've totally put my mind at ease over the PET scan now, thank you!
did you only have a radical hysterectomy and no chemo or radiotherapy?
I'm just panicking about all scenarios at the moment and just keeping active and busy whilst I'm in this unknown waiting period!
My MRI was done last week and pet scan on Wednesday, so I know that someone already knows the results of the mri so it's hard accepting I still have to wait for both to be done before I know any staging or next steps!
xx
No problem Vla.
The scans are the worst part, it's the initial waiting for the scan appointment and then the results. It's hard to think about anything else and it takes ages. You'll also find on TV in magazines etc anything you do to take your mind off it a cancer story will then appear, argh!
I only had a radical hysterctomy at the time with my lymph nodes removed, now I'm undergoing the 'worst chemo' for a reoccurence so I'm not sure if I would have preferred the initial chemo and radiotherapy after my hysterectomy, but as I didn't have any lymph node involvement, my margins were clear and my ovaries looked fine then no further treatment was needed.
I was petrifed about having lymph node involvement and the initial chemo/radiotheraphy, but the chemo I'm currently on is very manageable so whatever treatment you get will be very doable.
I hope your scan goes ok tomorrow
x
Hi all
So sorry to read what you have all been going through I'm new here and found after reading so many stories and days of making myself feel ill I can relate to this post the best.
I went to my gp end of last month with severe abnormal bleeding that started in Jan last year when I was pregnant with my 6th child. My gp did an internal exam and referred me for urgent 2 week appointment with a gynaecologist. I received a phone call a few days later with an appointment. I went in less than two weeks ago and had biopsies taken 4 in total. I was told I would receive a letter within 4 weeks with the results.
Less than 2 weeks later I was rang with an appointment to come in to see the consultant and to have a loop procedure. After reading everything they sent me I wasn't too concerned as I had been treated for abnormal cells back in 2012.
When I met with the consultant he informed me that 3 of the 4 biopsies taken showed cancerous cells and that the 4th showed pre cancerous cells. I had the loop procedure done and was told that this was so they could determine what stage and grade the cancerous cells are at.
I'm in complete shock and feeling numb and just so unsure of what to expect over the next few weeks if anyone can offer any advice based on their experience. I just keep looking at my babies and crying.
Thanks for taking the time to read it
Rachel
Hi Rachel
i can totally relate. I'm just over 2 weeks now since I got that dreaded cancer diagnosis. All my scans are done so I am living on the edge waiting for the results. At the start, I kept looking at my little boy and crying. I have now just shut off from friends and family from talking about it. I was finding it too suffocating with constant calls and texts with people asking questions that I don't know the answers to. It's not everyone's way of dealing with things, but it's working for me at the moment. Until I know my staging, I don't know what I'm dealing with.
It's easy to say keep busy, but the mind is horrible and can be your own worst enemy!
You get good days and dark days, hang on to the moments of bliss when the cancer thoughts are at the far back of your mind.
Victoria xx
Hi, pet scan is not so clostophobic as MRI and it doesn't take so much time.If you had MRI you will be fine.
Hi Victoria
Thanks for taking the time to reply. Hows things have you had your results yet.
I ended up in hospital Thursday- Saturday as got current infection following my loop procedure. I was told Friday morning that I have grade 1 stage 2b adrnocarcinoma. I am booked in for mri on Tuesday then have mdt meeting Wednesday. The lovely macmillan nurse that came to see me has pretty much confirmed I will need a full hysterectomy, which I'm ok with as I already have 6 children and didn't plan on anymore. The consultant wants me back in before the end of the week so I feel really worried about that. Theyve said I will have my op before the middle of June.
Take care
Rachel xx
Hi all! I’m in this situation now! How are you all? How did hysterectomy go?
