Hi everyone, i had my results for my smear in february which where high grade changes therefore i attended a colposcopy appointment the week after. I had punch biopsies done where the nurse stated she could see the problem, a mass which could be treated. As i have the coil already inserted it was suggested she could not do it immediately as she was unable to insert a new one… i was put done for another time… on receiving the biopsies i was rang 4 weeks later to say the results shown something different than what they thought tgey were CGIN. I was told that they had a MDT meeting to discuss these results and they suspect endocervical adenocarcinoma… i yesterday had an LLETZ and another large biopsy done so more waiting… theyve acted quickly im so greatful but i want more information really. Can anyone relate… 2 weeks is going to feel like a life time as they had initially said it could have spread to my opening… its been somewhat hard these past couple of months
Very similar here. Biopsies were inconclusive so sent for MRI….told it was CGIN, had a LLETZ treatment. Results came back after 2wks, told adenocarcinoma and more CGIN lesions remain. Having a repeat LLETZ to determine whether I have a simple or radical hysterectomy. Scary times, hating the wait for more appointments and results.
Hi there,
Well ive so much more to add to my story… i did indeed get diagnosed with adenocarcinoma staged at 1B1 and i was told they were worried it had spread to my opening therefore i had to have an MRI scan. After my LLETZ i suffered a nasty infection therefore i was on a strong dose of anti biotics… I had my MRI scan and it has come hack with no evidence of spread however on my report there was insufficient views of my cervix due to my tilted womb. I was not given a contrast dye for my MRI which worries me slightly and i also know that adenocarcinoma does not always show up on a MRI scan. After discussions with my doctor i am now awaitong a radical hysterectomy with lymph node removal and to be honest until these samples have gone away to be examined i will not rest. Im sorry i am just replying i didnt realise i had a reply but it has been a somewhat horrible few months. I spoke to my consultant almost 2 wks ago in regards to my radical hysterectomy and it feels like a life time. I have to wait upto 4 weeks for my op date then i can focus on my recovery. I cannot wait for some form of normality… my life has purely been based on cervical cancer these past few months.
Thankyou for your comment
Hi Janine, I have a tilted womb too and it makes examinations totally awkward and frustrating if the gynaecologist isn’t particularly adept! For my MRI they did give me the dye — is it that other things (organs, tissue) obscure the view of the womb if it’s tilted like ours, making it hard to see clearly? I am hoping you get good news soon, you hit it on the head with things — everything — being coloured by this, since I heard about my diagnosis.
Hello my lovely,
Yes i feel like cancer has had enough of my time this year, im also a nurse so i ask questions they dont like. I remember before i went for my LLetz i discussed what would happen next and they did say dependant on the biopsies i could either have to repeat the Lletz or go on 6 monthly smears… when she told me that i said NO, she looked at me and asked why then i gently stated that adenocarcinoma is only 20% detectable in smears… she then told me to stop reading as much!!! Il never forget that. Sometimes having the knowledge doesnt help however it will not change the outcome. People have mentioned petscans to me but ive never been offered which i dont understand. Ive also suffered with terrible lower back pain for the last year and also in the tops of my legs, when i discussed this with my consultant he said it was highly unlikely to be related however the literature does state that even early stage cancer can cause this. Im intregued to find out if it goes after my hysterectomy. Sending love and well wishes to you
Ps the waiting is the hadest part… it can distroy you, try and plan things to keep your mind busy i currently have the cleanest house in britain 
keep strong and try and stay positive and i know how hard that is
Janine
I’m a vet so understand most of what’s going on. An adenocarcinoma is the same in a dog as it is in a human!! I too like to read up on a lot, I feel knowledge is power but at the same time can become a huge worry. Trying hard to stick with scientific papers for my sanity.
I haven’t been offered a PET scan, I might ask about that. Seems a lot of people get one to check no lymph node involvement.
I think you’re right, KB73 - PET is the gold standard to look for possible lymph node involvement and if there is any suspicion it has spread into the nodes it’s a much safer alternative than cutting you open to do a biopsy…. I hope it goes well. I agree wholeheartedly that we need to stick to scientific papers and information as much as possible. There is too much potential for scare-mongering on the internet.
Definately agree with you both there… according to my MRI scan there was no signs of lymph node involvement but they are going to be removing the lymph nodes on my radical… maybe this is why i havent been offered a pet scan then as there are no suspicions…
its nice to discuss this with others. Every day is just rolling into one and despite trying to distract yourself its hard to be busy all the time. I also have ok days and low days but as i read on the forum chats so does everyone else.
If your lymph nodes are clear I would resist having them removed along with your hysterectomy. Your body needs your lymphatic system and there is a significant risk of lymphoedema developing following removal of lymph nodes. The chances of cancer subsequently developing in lymph nodes following a straight hysterectomy, if there is no sign of involvement at the time, is minimal. I would definitely get that PET scan and talk about this. You should have options - it’s your life and your future and you ought to be able to make an informed decision, which will only be possible if your consultant talks to you about it and does as many checks as is possible. X
