1b1 adenocarcinoma, my story so far

Hi ladies, I have been on this site since September 22, since my diagnosis of CC and found it so reassurring and useful that I thought I would share my story, in case somebody out there is in a simular situation, and needs something positive to read :slight_smile:

Sept 2022 - Smear test
Abnormal result - 12th Sept
Colposcopy LOOP - 16th Sept
C WORD - 29th Sept
Staging CT scan - 3rd Oct
MRI - 10th Oct
ADENOCARCINOMA 1B1 - 17th Oct
Consultant appt - 25th Oct (radical hysterectomy discussion)
Pre op - 1st Nov
Surgery - 10th Nov
Discharged home - 15th Nov
Pathology results - ALL CLEAR - 29th Nov

MASSIVE recovery journey, didn’t think it would be as hard as what it was, massive mental impact, now referred to a psychologist.

3 month review - 28th Feb 2023
Symptoms at this stage
Left upper thigh numbness, left groin pain intermittent, back pain intermittent, tender abdomen (all symptoms reassured to be related to my surgery, normal visual examination) next appointment in May!

If anyone is just starting their journey and wish to ask me anything, or just feeling low/anxious. I’m here to talk! Lots of love and positive vibes to each and everyone of you! X

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Thanks @amaayrachel

I keep seeing so many more experiences of adenocarcinoma depsite its alleged rarity when compared against squamous. My CNS explained theyre seeing more and more diagnoses of this which makes sense.

My timeline is very similar to yours.

2021 - borderline cell changes discharged for annual smears
Aug 2022 - high risk hpv with abnormal cells
Nov 4th - confirmed Lletz biopsy results of CC initial stage 1b1. Grade 3 adenocarcinoma with a component of neuroendocrine carcinoma. Discussion re radical hysterectomy
Mri to pelvis/abdomen and CT scan of chest
Nov 11th - pre op
Nov 14th - radical hysterectomy including ovaries and lymph node removal. Full abdominal surgery. Discharged 17th Nov
Dec 15th - histology confirmed slight increase to 1b2 adenocarcinoma mixed with large cell neuroendocrine. Downgraded to Grade 2. 1.5 cm clear margins, no spread to lymph nodes or surrounding tissues. Based on scans and histology it was determined there was NED. Started HRT when it was confirmed the neuroendocrine component was not hormone related.

Based on the neuroendrocine component however was offered adjuvant chemo to lower the risk of recurrence (neuroendrocine conponent carries higher risk) and to rid myself of any microscopic cells. Half way through a 6 cycle chemo plan.

Will be scanned again on completion of treatment and followed up every 3 months aswell as being returned to gynae for vault smears.

I could have rejected adjuvant chemo based on the adenocarcinoma but opted to have it for the neuroendrocrine which unfortunately isnt thoroughly understood in cervical cancer as i was told it pretty much shouldnt be there, usually occurs in the lung and digestive system but it has occurred to a small percentage of women over the years.

Very grateful to be given the opportunity to have further treatment, the side effects are rough but doable. Have hot flushes due to premature menopause but other than that the prematire menopause is so far not causing too much of an issue.

Seeing a psychologist for the mental health aspect which i often think is the worst part of it all

I think we are so lucky that the adenocarcinoma was caught so early and just wanted to add to your experience to help others also.

Sending love and hugs x

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Hi, I am very like you ladies. Got my smear Jan 22 still no results mid March, phoned and GP had to request them. No results but received an appointment for a colposcopy. GP told me when I called borderline changes and apologised I didn’t get my results before the letter. Went at the end of April for the colposcopy and was told that it was moderate to severe and that she would like to take me to theatre and also put the camera into the womb and do a lletz. Got my appointment for this for the 20th of July. Roll on a further 3 weeks & got a call to attend the hospital the following day & to bring someone with me. At the appointment confirmed CC stage 1. Totally shocked, no symptoms at all. Went for a MRI scan to check for further involvement and there were looked at the following day at the MD meeting. CNS nurse phoned me after the meeting and confirmed no lymph node involvement and moving to radical hysterectomy. Met with my consultant on the 5th September and explained all, had adenocarinoma and was staged 1b1 tumour size of 19mm. I opted for my ovaries to be removed they tried to advise against as only 40. I got a call the following Monday they had a cancellation and I went in for my surgery the following morning. Radical hysterectomy with 14 nodes removed. Started me straight on HRT patches. Seen the consultant in October and all was clear no further treatment. Went back to work on Jan as it totally floored me and energy level took a good while to build back up not need a nap during the day. Finally feeling more like my myself and starting back to the gym. I was opened nelly button down and now now feeling in my tummy and the tops of my thighs. To be honest it’s only a very small price for what could’ve been. Seen my consultant on the 28th Feb and all good. He done an internal which wasn’t as bad as I thought & back in 4 months. Always here if anyone ever needs an ear. This is my first post as only now can really deal with things as I had been in a bad place prior. Xx

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Thank you Amaayrachel,

I had surgery similar to yours (Jan 2022). and had right pelvic /muscle area pain. Excercise including yoga helped with this, as it was in part a result of they way I was holding myself (protecting my abdomen) post-op. wishing you the best, R.

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