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Confused about when you really have the all clear?

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Lydiasm
Confused about when you really have the all clear?

Hi everyone,

It feels so funny to move through the forums like this. This is my first post in post-treatment! I had a stage 1a1 diagnoses, had a LLETZ but not clear, had another LLETZ under GA last month. Called CNS on Monday and she told me biopsy from that was all clear with clear margins. Obviously I was so relieved!

This morning I have seen a copy of the MDT meeting report and it says last biopsy had clear margins and I have a 'test of cure' colposcopy in 6 months BUT it does say my diagnosis is still 1a1. I told all my family I had the all clear, so even though I know the cancer itself is gone, is it normal that you don't drop the diagnosis until you've had a successful Test of Cure colposcopoy?

Hope you're all doing well xxx

Abnormal smear 11/11/20 wirh high grade severe cells. Called into hospital same day for LLETZ

6/12/20 MDT meeting confirmed 1a1 cancer found in biopsy 

30/12/20 first oncology appointment.

21/1/21 Second LLETZ Under GA

2/2/21 Biopsy results show no more residual cancer and no more CIN3, all clear margins. Follow up in 6 months! And breathe...

FeelingTheFear

Hi Ashlydia 

So sorry to hear about all the stress you've been through with your diagnosis, but what great news about your clear margins! 

As far as I'm aware your "test of cure" (such a misleading term imo) will be to make sure that there are no more abnormal cells that have developed since your last LLETZ, which would confirm that you don't need any more treatment at the moment. You will always "have had" cancer stage 1a1 and that is based on the size of the cancer that they discovered (in your case, tiny! More great news!) I am not sure what you mean by drop your diagnosis.

Certainly with my team, and from what I read of others experiences on here too, they tend to use the phrase "no evidence of disease" (NED) which means they cant find any leftover or new cancer and therefore you don't need treatment right now. Eventually after a number of years of follow up appointments which are all NED, you are discharged from their care and return to the same observation/screening schedule as anybody else who never had cancer.

It's great that your cancer was found small and early, try not to look ahead to the next hurdle just now and take a minute to let yourself breathe a sigh of relief! Xxx

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

Petesdragon
Petesdragon's picture

Excellent reply "Feeling the fear". 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Lydiasm

Thank you Feeling the Fear. I guess in my head I just thought it was all done and dusted but it appears even though the cancer is gone right now you don't get discharged from the Oncologists care just yet. I have an appointment with him in a couple of weeks too which I am confused about. 

obviously very happy to have had the second biopsy come back clear, and praying it stays away and no more treatment is needed. Just felt a bit like it's rained on my celebratory parade that I still have to go to appointments and now feel like I can't totally relax.

still- today it's all good so I should cling on to these positive thoughts. My whole (very short) experience of all of this is that the waiting is definitely the worst. All the waiting and overthinking time! I don't know how you ladies all do it so calmly! 

take care everyone xx

Abnormal smear 11/11/20 wirh high grade severe cells. Called into hospital same day for LLETZ

6/12/20 MDT meeting confirmed 1a1 cancer found in biopsy 

30/12/20 first oncology appointment.

21/1/21 Second LLETZ Under GA

2/2/21 Biopsy results show no more residual cancer and no more CIN3, all clear margins. Follow up in 6 months! And breathe...

Chez R

I've just had (26.01.21) an hysterectomy after discovering stage 1a1. I dont have any checks now for 5months. Ive been told I should be fine now.

 

FeelingTheFear

Hi Ashlydia 

So much of this is a headgame, I was warned at the point of my diagnosis that the mental struggle would be as hard, or harder, than the physical, and nearly a year on I still have the odd "wobbly" day but I also have a day or two at a time where I forget all about it - which I couldn't have imagined a few months ago.

I'm at the point now of feeling reassured that I'm still being looked after by my oncology team. If anything "untoward" is going to happen, they are going to catch it much earlier than anyone else. And as we both now know - the earlier, the better. I also feel I cant trust my body/instincts because I had no idea I had cancer, so how would I know it came back? But they are experts in this cancer and they will know better than me if things take a turn for the worst in the months and years ahead :-)

Consider it that every woman gets screening but you will be given a little extra screening - because that's really all it is. 

 

Ps. Thank you petesdragon! I have followed so many of your posts and have a huge amount of respect for you and what you've contributed to the forum x stay well x

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

Abi455

Hello Lydiasm,

This is my first post on here - I have been too scared to look at anything and have felt so alone. But I have noticed that your experience so far looks a lot like mine, I had my smear which showed high grade changes in January, and my first LLETZ at the beginning of February, which found a tiny amount of cancerous cells, I'm still not actually sure of the 'diagnosis', but it's come as a huge shock to me. I'm 28 and can't get my head around any of it, such a shock. I have a second LLETZ under general anaesthetic booked in next week and I am terrified! Any advice/reassurance would be much appreciated - I haven't known anyone personally who has been through this part so I would be greatful. Thank you & hope you are doing okay xx

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Moving forward from a cancer diagnosis