I am 33 years old, had a cone biopsy in September, pathology showed CGIN, clear margins. 7 weeks later (last week) I received a letter in the mail from the Oncologist telling me a specialist pathologist revisited my pathology and they have found cancer.
the letter states "you have had the treatment you require", but we need to discuss the situation further. Even though I feel like I'm still okay, I feel shocked and quite upset that I "had" Cancer. I'm scared that not everything was removed, I just feel incredibly anxious and I'm back to thinking every small twinge is related... we all know that feeling!
From what I have read, this could only be stage 1a1 as the letter described "small area of cancer". My partner and I would eventually like kids and I feel frightened of what this new information will mean for that. We are also trying to get home to Australia as we have been essentially stuck here during the Pandemic.
Hoping I get piece of mind and the information I need on Thursday. There are so many brave women going through much much worse than I am on here, I do feel guilty for feeling this way but it really is an emotional rollercoaster!
It's a huge shock when the C word comes your way - only those who have experienced it can really know. Absolutely no need to feel guilty - the news comes with a heap of fear of the unknown and no doubt you will be feeling anxious about what the discussion in your appointment on the 26th will involve. Where you are now is probably the worst emotion wise - it'll feel better when you know more about what the cancer findings actually mean for you. Hope all goes as well as possible for you.
That's where I am. 1A1. It's as you say a rollercoaster. I'm waiting for a hysterectomy, which is preventative. Cancer at this stage is still microscopic as I understand it, and very treatable. It's terrifying but treatable so hang in there! You're not alone! xxxx
sorry to hear what you are going through.
i had a cone biopsy and the oncologist is confident he got everything. I have an MRI tomorrow to check my lymph nodes and every thing in the pelvic area. Stressful time indeed.
I hope your hysterectomy goes well. I have been told I don't need one at this stage, not sure the anxiety will ever go away though.
thinking of you xx
I was in the exact same situation. I also was diagnosed with adenocarcinoma 1a1 following a cone biopsy where they thought it was in situ. I was 28 years old and also wanted to preserve my fertility. I didn't require any further treatment and am on 6 month colposcopies with HPV testing, pap and the occasional biopsy (as my cancer was higher up). I'll be 2 years NED next month! I didn't have a MRI as here in Canada they are only offered if the biopsy comes back positive for LVSI and mine did not. I wish they had given me a MRI as it probably would have eased my mind a little.
The anxiety has gotten better but I still worry anytime I have any sort of pain. A doctor once advised me to try to compartmentalize it and that seemed to help but I admit until I had my first "successful follow-up" I was certain that they were missing something. I hope your MRI results are all clear and give you some peace of mind!
How did your appointment go on Thursday? I am in a similar position, I had a LLETZ treatment done after high grade abnormal smears (They just did it straight away at first colposcopy before even looking) almost 4 weeks ago and have not had any results or letters. Then yesterday I looked on my online GP record on Patient Access and the NHS app and that states I have a Malignant Tumour of the cervix and it's been graded as stage 1a1 (so thankfully very early). Yet no one has told me this or spoken to me about this?! I have called the hospital and GP this morning and asked someone to contact me back.
I'm interested to know what your treatment plans are for your case? Hope you are okay and it's all positive news x
Weirdly, I had cancer, but the consultant managed to take it all away at my first LLETZ. He removed a "small warty lesion". But I had to have a second LLETZ where they confirmed that that cancer had been removed, but they also found adenocarcinoma stage 1a1. They haven't named that first cancer, but it was on the surface and just visible. So I'm guessing it must have been the squamous cell type? I don't know. But adenocarcinoma is internal and harder to detect and harder to monitor. I'm just lucky as hell it's so early.
But yes, it's stressful, scary, unreal. Fingers crossed for you!
sorry for the delay in reply to this!
my scan went well, all clear, no lymph node involvement and also had a vaginal ultrasound which was also clear.
my treatment plan is a funny one, I had a cone biopsy under GA in September which actually removed it all. So now I have colposcopys every 3 months for the next year, then 6 monthly for 2 years and MRI every year for 3.
I also will need a stitch in my cervix if I have children as the cone biopsy was very extensive and now my cervix is only 13mm long. So there's a lot of monitoring which is good to know!
I hope you are doing well and getting the answers/ treatment you need.
I'm very worried my young daughter has cgin going for lletz , I'm worried it will be cancer so scared , she has 2 babies
Hi Kari, im in canada too and just got diagnosed 1a1 adenocarcinoma. I want another baby so bad. Do you have any updated on how you are doing ?
I was diagnosed with high grade cell changes in 2017 and had a leep procedure done and it was clearly seen on the screen all over my cervix.
Ever since then I was in routine checks and in the clear, 6 months ago at a check my results came back as slightly suspicious cells but not quite clear cancer my dr said, the outside of my cervix appeared to be clear. My most recent 6 month follow-up check she used the spoolie to go deeper into my cervix again and I received a voicemail that she said they are leaning towards cancer cells? I have a call with her on Thursday to discuss in detail and go over my options for moving forward now.
I am confused, I have had ultrasounds that show low egg count and atrophic ovaries, I have been very ill and even had a breast explant on Wednesday thinking they were making me sick with with low desire for food, nauseous, weak, dizzy, abdominal pain for over a year in one tender area, pain during intercourse and spotting along with what looks like passing tissue with pink tinged?
Has anyone been in this situation with it not sounding to be a clear YES or NO for Cancer?
I myself am in Canada also and want another child.
I am sorry for your diagnosis, did they tell you what they recommend for your treatment?