I am looking for advice please. My journey started back in November 2016, I had my3 yearly cervical screening. The result came back a week later stating I have high grade moderate dyskariosis and had a colposcopy and lletz the following week. It took 7 weeks for me to receive a letter with an appointment a few days later at colposcopy. There I was told that cc had been found with no clear margins. I was booked in the following week for another lletz under general anesthetic. Had that done and was told results would be back in 2\3 weeks. My consultant said if it comes back that he got all the cancer I wouldn’t need further testing just follow up every 3 months. He never told stage or type and I stupidly never asked think I was overwhelmed by it all. So its now been 4 weeks since my op and my consultant is away till the end of march so I have to wait for another consultant to look at result etc, and he’s been off and came back today but I can’t get to speak to anyone as there phone system is being updated gggrrrr can anything else go wrong lol. The gynecologist who did surgery etc is my old gynecologist I have been having debilitating symptoms for 3 years had several ops with my second gynecologist and have been diagnosed with endometriosis and interstitial cystitis. First gynecologist discharged me saying there was nothing gynecologically wrong with me!!! So I am obviously not feeling very confident being under his care especially when he doesn’t think I need any scans or anything. My symptoms have not improved at all afterany of the surgery so I am obviously convinced it could be the cc all along. What would you ladies suggest? What is the normal routine regards to tests scans treatment etc? If I can’t get to speak to anyone at the hospital tomorrow I am going to go down and demand answers. Sorry for the long post, any advice would be great thanks xx
Hi Lottie and welcome to the forum :-)
I don't ever like to see anybody go unanswered but I'm afraid I don't know what your question is. Hope it all works out for you anyway.
Be lucky :-)
Thanks for replying Tivoli, basically cc was found after my first lletz treatment, I had a second lletz treatment under general anesthetic which I finally got the results for yesterday. They have removed all cancer and cin3. And follow up in3 months.
So my question is, is this the normal procedure? No scans or anything.
I just don't completely trust my current gynecologist.....
Hi Lottie :)
Which country do you live in? Do you get allocated a Macmillan nurse or someone similar who you can ask your questions?
In relation to what's normal re scans etc, I just had an MRI scan after they found cancer in my first LLETZ samples and then a chest x-ray before my second LLETZ but I've seen on here that some people had no scans yet others had PET and CT scans as well so I'm not sure what is normal and why they use different scans on different people.
I hope you get some answers and don't have to wait too long for results.
Hi Lottie :)
I've just noticed your second post. Good news that they removed the cancer with your second LLETZ :)
In relation to whether it is normal procedure, I got told all the cancer had been removed from my cervix after my second LLETZ as well but I also had my pelvic lymph nodes taken out after that to see if the cancer had spread to them. Have they told you what stage the cancer was? I was stage 1b1 and they said they take the lymph nodes out because there is a 10% chance of spread to them but I don't think they take them out for the earliest stage because there's such a small chance of spread.
I got told I've got stange 1a cancer last Monday,, got an appointment date for a full hysterectomy on the 29 of this month!! Apparently they will take a biospy of the lymph nodes while having my op !! And will know there and then to take them out . And lottie08 surely there should be another consultant to tell u your results as it's a horrible time when ur waiting and the unknown? Hope u get answers soon x
Hi Lottie :-)
If all the cancer was removed with a second LLETZ then no you don't need scans, just regular smears and colposcopies should keep you perfectly safe. It may have been another matter if your cancer cells were adenocarcinoma because that tends to hide itself but it sounds like your cells were squamous which is as easy to find as a shop window :-)
Be lucky :-)