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Results worry

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TJG2708
Results worry

Good evening all, 

please can anyone help! Apologies in advance for rambling....but coming across this site and forum, I’m hoping someone may be able to help?

I’m wondering if anyone has received a telephone call from a hospital for an appointment after colposcopy, leltz and a biopsy, opposed to receiving the results in the post?

About 10 weeks ago I had a smear test, which I received my smear result, approx 5 weeks afterwards. I was called in within a week for an colppscopy appointment and had Leltz treatment at the appointment and a biopsy taken afterwards.

It has been approximately 5 weeks since my colposcopy appointment, treatment and biospy, so I have tried to put it to the back of my mind, the best I can and have been waiting for my biospy results in the post.

This morning I receive a telephone call from the hospital, informing me that the consultant would like to see me on Tuesday at 9am. I asked why and explained that I worked nights and was scheduled to be working on the Monday night until 8am, I also said that if it was important and I needed my wits about me, that I could cancel my shift at work to attend. The secretary said that I should, as she had been asked to call me to arrange this. I questioned again why I was being asked to attend and she replied that it would be to discuss my biopsy results and/or treatment. Now I’m not sure if I am over thinking things and although I appreciate that no one has a crystal ball, I am worried that as much as I am smiling on the outside (with my clown face) that I’m panicking on the inside - the more that I am telling myself to stay positive, I’m concerned that this is further for me to fall! 

I had had abnormal cells removed approx 22 years ago and had a smear test approx 17 years ago, and although this was clear, I have never been so scared of attending an appointment. Stupidity and fright then kicked in and I never had another smear, until 10 weeks ago - embarrassing to admit and so very wrong to bury my head in the sand. 

Maybe not receiving results in the post is normal or maybe I should phone the secretary back and ask for clarification, as I will be panicking until Tuesday - I appreciate that 4 days to my appotment isn’t as long as some people have to wait, but any advice would be gratefully received. 

 

Thank you you for taking the time to read my rambling post xx

Memagh

Hi TJG,

Sorry you find yourself in a similar position to so many of us on here. I'm quite new to all of this myself so not a fountain of knowledge. I can tell you that I went for colposcopy/Leltz 3 weeks ago and the consultant told me I had cervical cancer before I left the room. Despite the tumour being 4cm, I have been diagnosed quite early at stage 1b2. I can only hope this means IF they did find anything that it is very early that it took a biopsy to find it. The waiting is really torturous and mentally draining but thankfully just a few more days to go. Try to eat well, get lots of rest and stay off google. There are an amazing bunch of ladies on here so feel free to keep asking lots of questions. Let us know how you get on. Will be thinking of you! 

Maria

 

Lotty9000

Hi TJG

I’m sorry you find yourself in this situation. 

My diagnosis came 8 days after my lletz procedure and I received a call from the secretary asking me to come in. I had 2 visible growths on my cervix that my consul said were “normally abnormal” so she wasn’t concerned. My CC was very early stage 1A and luckily picked up in the posterior portion of my lletz.

I know this probably won’t make you feel any better but as Maria says IF there is any concerning results then it will be early, the fact they didn’t see an obvious growth or say at your appointment is a positive thing. I actually called the secretary back and told her I couldn’t wait the 3 days for the appointment and my consultant kindly saw me that day.

Try not to panic, look after yourself. You cannot change whatever the results are but whatever they are you have got this!! 

Oh and do not beat yourself up for missing a smear. You went,that’s the main thing.

xxxxx

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 

TJG2708

Thank you so much ladies, I’m normally the most level headed person. I’ve been out with friends for lunch today and didn’t actually think about it once, I decided not to tell my friends of my worries, as to be honest I felt lunch was just 3 of us together having a natter, putting the world to rights and I didn’t want it to end!

I received a letter this morning and it just confirmed my appointment and asked that I bring with me a diary and urine sample. 

Reading through the forum and reading your supportive replies, I am going to do all I can to have a great weekend and really adopt an approach of no matter how much I stress or panick between now and my appointment, nothing is going to change the outcome (be it good or bad). 

My thoughts are with everyone who is worried or receiving treatment. Thank goodness for the NHS, doctors and community forums like this.

Thank you so much Maria and Lotty for replying, honestly, knowing I’m not on my own has really helped. I’ll make sure that I update on here after my appointment - Maria please let me know how you go.

Also, I am definitely staying off Google for the time being! 

thank you again so much and for your advice xx

Lotty9000

Have a brilliant weekend! 

Will be thinking of you Tuesday xxxxx

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 

TJG2708

Thank you Lotty xx

Memagh

I'm hoping to have the results of my pet scan by Wednesday and really hoping they don't find anything and up my staging. Whatever happens we will both be a little better informed by Tuesday/Wednesday and knowledge is power. Catch up Tuesday/Wednesday x

Lotty9000

Will be thinking of you Maria, good luck on Wednesday xxxx

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 

Heavensnewangel

First of all, never apologize for rambling, we've all been there and were in the same boat as you and you are scared and it is completely understandable. I'm not sure if what I say will ease your mind because you'll worry regardless..And I'm not saying that to make fun of it, I'm saying that cuz I know exactly how you're feeling. 

I will start by sayiing this, 25 years ago I had a pap test and it was abnormal and was told to go back in 6 mths to follow up, and like you, I did not...It was stupid of us, yes, but fear takes over and it can't be controlled at times.

Fast forward to 3 years ago, I had a period, followed by 5 days of spotting after, followed by another full blown period...I put it down to my age which was 47 at the time, but to make sure, I went to the hospital. Hospitals don't do pap test, but they give me a pelvic test, and after it, he asked with a look on his face when was the last time I had a pap test...At the time, I didn't think anything of it...He ordered a transvaginal and pelvic ultrasound, which showed I had fibroids (explains the bleeding)..He give me a number of a gynocologist to call immedietely, and  another mistake, I did not. 

3 years later my fam doc order a complete blood count and it showed I was severely amenic...I said I have fibroids and heavy bleeding, he said thats probably it...He give me a number of a gyn/ob doctor and this time I went...She gave me a biopsy on uterus (precaution due to my age), a pelvic and pap...She asked while she was inside examing me "if I bleed after sex"...At this point, terror really kicked in because I know she saw something ( I know now that she saw I had abnormal cells) and asked this for clarification if was cancer or not...Rhe pap showed severe abnormal cells (precancer)...After all my biopsies, colposcopies etc, she said she wanted to see me as well...She wanted to explain the procedure to me and how it was going to be done as well as instructions and paper work I had to fill out.

If you are getting the cone biopsy, you need to fill out some stuff...Why they asked you to miss work is because sometimes there is a waiting list for those treatments and they probably want to get you in as soon as possible.

UPDATE ON MYSELF...I had was high grade abnormal cells got it removed by a cone biopsy and received clear margins on my follow up after surgery.  I'm giving you all this info to  let you know that I been there, and like you, I thought for sure it was cancer, and with my heavy bleeding, I thought, did I ignore it all this time and it wasn't the fibroids causing this...Hell, I was even making a will...I know its funny now, but the fear messes with your mind.  Please keep us updated and good luck to you. 

Please keep in mind, that it was 10 weeks since your pap from what I read, Gynocologists can feel or see if it is cancer...Do you think they would wait for the results, or would they put an urgency to it...Having loss many family members to cancer, I can honestly tell you that you'd have your results within a week if they suspected cancer...The doctor would tell you right there and then, come see me on this date etc...One thing about me was I suppose to have the leep treatment, and when I went in to get it that day, when she looked she said to the nurse "I'm not going to give the leep" instead "I'm going to give her another biopsy" (I previously had a biopsy after my pap showed abnormal cells)...To which those results, confirmed for me to get a leep...After the second biopsy she said "I'm giving you another pelvic test" (...It doesn't take a genius to figure out she was concerned and feeling for tumors or anything suspicious especially when she's given me a pelvic on my original check up..After all that, I asked her what is up...She said the cells became more abnormal that I'm  going to have to do a cone (which she couldn't do that day as procedures need to be followed), so at this point, I figured I just want to know so I asked straight out if it was cancer, and she said "not that I can  see or feel"...she said come see me in 2 weeks when results come in and we'll discuss your treatment. No matter how much you pry, the secretary or staff is not allowed to give you the results, only the doctor can do that. 

TJG2708

Firstly, I have had so much comfort and ressasurance from this forum, I’ve spoken all my worries and fears out loud and for all your support, I am so so grateful and think that having a forum like this is priceless. 

Apologies for my delay in responding, after my appointment on Tuesday, I haven’t really spoken to anyone and thought I’d wait until my letter confirming the outcome was received, as to be honest I decided to work the night before (to keep busy), and didn’t really take it all. 

The consultant was lovely and confirmed that after my leltz treatment 5 weeks ago, the biopsy taken afterwards had shown:

‘high grade pre-maligment lesion of the cervix has in fact been reported as showing very early micro invasive disease to a depth of 0.02. This is extremely early, but there is evidence of high grade CIN to the margins of the excision specimen’.

Now (and also as I walked out from my appointment), I’m kicking myself quite hard, as I didn’t ask any questions and didn’t explain about how my body is feeling 5/6 weeks after the previous leltz procedure. Even my consultant asked a few times if I had understood and like a friendly, person....I just nodded and said yes!

The guidelines I was told at my first colposcopy appointment was that I may feel cramping and could experience discharge/bleeding for up to 4 weeks. The problem has come (I believe) from the job I do, as although I wasn’t on shift for 4 days after the leltz..my job is very very manual and I’m lifting a lot - I’m a night time undertaker in funeral care and am active 12 hours a night. 

I have already received a call from the consultants secretary and she has booked me in for another leltz, but this time under general,  in a couple of weeks - I’m more panicked about this procedure, as I’m still healing from the last and am thinking would it be a bad thing to ask if I could postpone or even just be followed up with in 6 months? My poor body seems to be going through a lot at the moment and is even 2 weeks into HRT tablets - and I still trying to get my head around this, at the age of 44! I realise, that they don’t just booked you in for the sake of it, but I just want some time for me and my body and to be honest, some time without wearing massive sanitary towels! 

My thoughts are with all who are worrying about results/treatment and those fighting - women sure don’t have an easy ride in life, but being there for each other, sure does make us stronger! 

Thank you again to everyone xx

 

Lotty9000

Hi TJG

Ive been wondering how you got on. I have to say I totally understand how you feel. I had a second lletz 6 weeks after my first to confirm staging and make a firm plan of care. Like you I remember thinking “I don’t think I can do that so soon”.  But I was also very aware that I needed to do this so that I could move forward and get me on the path to cure.  In hindsight I was moving along in an almost robotic way just moving from one test/proceedure to the next.

I know you’re slightly different in that your malignancy was very small but I would still go with the recommendations of your consultant. It’s a really tough thing to go through but you can do it. You will get through this and you will get rid of it for good. 

I have my hysterectomy next Thursday, again I feel exactly the same, I don’t really want to,I want to be left alone but I know I must. Then I Hope I can draw a line under this and move on. 

Thinking of you 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 

TJG2708

Hi Lotty, 

ive been thinking about you and wanted to say that I hope it all goes ok tomorrow for you xx

Take care Tracy (TJG) xx

Lotty9000

Thank you Tracy. I’m due to go in at 12 so just getting the kids out to school and distracting myself. 

Xxxx

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 

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