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What happens next?

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Stacey31
What happens next?

hi everyone am not really sure where I go from here am not getting told much. I was having symptoms like painful intercourse bleeding afterwards etc sorry for tmi. I went to my doctors for a smear test 1st one at age 31 (silly i know) results came back severe abnormal cells (dyskaryosis). I then had colposcopy where they done a punch biospy. They came back as cancer squamous cell carcinoma. After this i had a loop biopsy. I was lead to believe this would stage the cancer but today I got the results from that and they basically just said it was to confirm and diagnose cc and that I was being transferred to QE hospital. Sorry for rambling but what happens next how do I find out what stage it is at. Thank u 

Stacey

Lotty9000

Hi Stacey

Im so sorry to hear of your diagnosis. I can only really talk about my experience but following lletz confirmation of cc I had an MRI and CT to check for any evidence of disease in my lymph nodes and whether cc was confined to my cervix or not. Following these tests there was an MDT meeting (multidisciplinary team) where they discuss cases with other specialists to ensure correct staging and treatment. It was decided I needed a 2nd lletz to confirm diagnosis and treatment plan. After 2nd lletz further MDT meeting then final staging and treatment. 

The waiting is the worst, I found during this my mind ran away with me and I got pains all over which made me think it was everywhere. I have a very good consultant that spent time with me trying to reassure me that during the wait the cc wasn’t “doing fireworks” as she put it and spreading everywhere. 

Once I had information from the first MDT I felt much better.

Good luck and thinking of you. This forum has been fantastic 

C xxx

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

Awaiting final pathology results 

Tinkerbell86

Hi Stacey, 

i was the same as you went for my first smear late, got told it was high grade dyskariosis went for Lettz treatment then was told was cervical cancer. 

I was transferred to QE hospital in Gateshead where I then had examination under anaesthetic and then mri scan and after that I was given my stage which was 1b1 adenocarcinoma.

From being told it was cancer to my surgery (trachelectomy with lymph node removal) was about 3 weeks in total so it moved quite quickly. 

Hope that helps a bit x

Mariewendy79

Hi Stacey,

so sorry to hear this, sending big hugs.

Next step will more than likely be MRI to see exactly where the cancer is and how big, they will be able to give you a rough guide of staging from that. Then unfortunately it’s more scans tests and examinations. Waiting is worse it’s horrible stuck in limbo, days feel like weeks, weeks feel like months. It might not feel like it now but it really does go by so quickly. From my diagnosis to treatment starting it was 6 weeks.

Stay strong, and keep in touch on this forum it’s been much help to lots of women all in the same situation 

Marie x

15th Jan 2019 - Abnormal smear

28th Jan 2019 - Colposcopy LLETZ biopsy CC suspected

4th Feb 2019 - MRI scan

7th Feb 2019 - Biopsy + MRI results cervical cancer confirmed 

21 Feb 2019 - PET scan. Oncologist meeting, stage 3b CC lymph involvement

1st March 2019 - Ureteric stent op

20th March 2019 - Start treatment, 25 radiotherapy, 5 chemo/Cisplatin, 3 weekly brachytherapy 

5th Aug 2019 - MRI scan

7th Aug 2019 - PET/CT scan

AWAITING RESULTS!’

 

Stacey31

Thank you all so much for taking the time to reply. I have spoke to colposcopy today and my results have been transferred to QE in Gateshead for 2nd opinion. Also been told i will hear soon about a Mri scan and a meeting will take place on Monday. Said it could take a couple of wks till i hear anything so just a waiting game xx

Stacey

noodlesdoodles

Hi Stacey,

I have just been through this and the QE are fantastic - you are in good hands. It’s all a bit of a rollercoaster and the waiting and not knowing is worst. Just take it a step at a time and know that all the staff are doing what is best for you.

I had a LLETZ then CT, MRI, EUA and PET scan. You may not get all of these but they do tests to really understand what is going on.

After that I found out staging and treatment plan. It felt like forever, but really it was just over a month from LLETZ to staging.

Its  overwhelming and a worrying time, but I found the support on here amazing.You are definitely not on your own with this and any questions you have just ask.

Big hugs xxx

Stacey31

Thank you for your reply. I am booked in at doctors for E G F R bloods took on Wed morning then on Wednesday afternoon i am booked in for CT scan then fri have my MRI scan. Do you think after those tests i will wait long before finding out what stage it is at? Where you digonised with squamous cell carcinoma or the other one? Xxx

Stacey

Stacey31

I have getting results stage 1b1 cc after recieving these i have had a ct scan and Mri. Then i have getting a letter to go for a pelvic ultrasound and/or trans-vaginal scan is this normal?

Stacey

emmz13

Hi Stacey,

I hope that you’re doing ok all things considered. It’s  a very difficult time but it will get easier once you get have all the answers. It is normal to receive a barrage of tests once you’re diagnosed just so the consultants can see exactly what they are dealing with so they can figure out the best treatment plan for you.

if you were originally referred via the GP I think you are automatically then referred for a pelvic ultrasound my consultant told me to cancel this appointment as I wouldnt need it. It might be different for you but I’m sure your consultant could tell you. 

It might take a few days or so from scans to results my radiographers said that the scans take 24/48 hours to be processed and my consultants secretary said she writes up the findings of the MDT meetings in the afternoon and post the results out. I guess it depends what day of the week you’re hosptial hold their MDT meetings. 

Much love to you, I will be thinking about you, 

all the best,

emma xxxx 

May 19 odd symptoms

03/06/19 doctors appt internal exam, said everything looked fine, did smear. 

10/06/19 urgent colposcopy due to HPV positive and severe changes. 

21/06/19 consultant sees 2cm tumour takes punch biopsies. She’s pretty sure it’s cc.

24/06/19 cancer confirmed, grade 3 preliminary staging 1b.

03/07/19 X-ray. 08/07/19 MRI and PET scan. 10/07/19 MDT meeting

15/07/19 restaged 2b parametrial invasion no lymph node involvement.

16/07/19 treatment 5 1/2 weeks chemorads

18/07/19 planning MRI 26/07/19 preassessment Chemo

05/08/19 chemorads start

11/09/19 chemorads end!!!! 

16/09/19 Brachy

19/09/19 DONE!!!! 

More Information

Cervical cancer