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Please anyone can you help me? Very scared!

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bekah1986
Please anyone can you help me? Very scared!

Hi ladies, 

I apologies in advance as I haven't actually had my confirmed diagnosis yet, (so far just know CIN3 and awaiting LLETZ) however I need some help and advance from any of you amazingly strong ladies as I am in a really dark place, I am having panic attacks throughout the day, not able to sleep max 2-3 hours at most each night, Lost appetite completely... 

I will start by telling you all, that I am one of the very silly nieve ones that has been having heavy discharge for around 2 years sometimes think and slimy never smelly but sometime quite a lot like in my knickers and especially after wiping after having a wee... I have also bleed inbetween periods not every month but some months for the past 2 years or more... The reason I am kicking myself is that I honestly didn't know these were signs of CC. If I had I would for sure gone to visit my GP. I feel so angry with myself as I know this is all my fault and I have neglected my health so badly... I also have a 11year old daughter who needs me and I need her... 

Recently in the last 8weeks I have been suffering with a hoarse voice and what feels like a lump in my throat but isn't painful but I can feel it when I swallow... I am now terrified that it has spread to my throat as i am now getting signs of throat cancer... I am now getting pains down my right arm and chest area, all I'm thinking now is that I could have possibly had CC for quite a few years as I know in early stages you don't often seem to get symptoms. I am fearing the worst stage 4b cancer as I seem to have signs everywhere... 

Ladies please can you share with me your story even if it is brief bullet point... I just need to know that maybe there is someone out there with similar symptoms to me and they are not stage 4...!! 

I am going out of my mind with worry and can't ring any helpline as they are all closed for the bank holiday weekend but I so desperately need to talk to someone who understands...

Do any of you ladies know if there is any 24 hour help line ..?? 

Also were any of you told you had CC after first biopsy without having the LLETZ done or what it all after the LLETZ..?? Would they know from just punch biopsy if I have CC..?? 

If any of you ladies think you could help reassure me in anyway please do. 

My world feels like it is falling apart... The waiting is the worst part...

Big hugs to all. 

Bekah. xxxx

Abnormal smear - servere 

27th April 2017 - Colposcopy biopsy done. 

20th May 2017 - result from biopsy CIN3

Next appointment 30th May 2017 

LLETZ done under GA 2nd June 2017

Philleepa

Hi chicken x You're not silly or naive - all the symptoms you were having could be put down to other lady things. I went to the gp loads of times over my symptoms and the Dr's didn't once think to have me checked for cc - probably because my last smear test was OK. 

All yourights other symptoms sound like anxiety. I had it during my treatment,  was convinced it had gone to my throat, went to a specialist to have a camera down my throat and he said I have reflux. Gave me omeprazole and the lump went within days.

I don't think you are stage 4b. My story is that when I eventually was referred to a gynaecologist I bled everywhere as soon as I was touched. I was told to come back to have the mirena cool fitted by a more senior gynaecologist.  She told one look at my bits and started talking very quietly to the nurse. I got dressed and was told that from what she's seen i had cancer. She took biopsies there and then and I was sent for an mri scan a week later. A week after that I was diagnosed with stage 4 a.  The reason I don't think you are stage 4b is that my 4a was visible to the eye so I would presume 4b would be too. 

You've only a couple of days now to get your results so please try not to over think things and stay away from Google 

bekah1986

Thank you for your reply Philleepa, 

If you don't mind be asking what were your symptoms..?? And for how long did you them for before being diagnosed..?? 

My only concern is that my throat has been feeling odd from before the smear result which panics me as I think it can't be in my head... 

How long did it take from the day you was diagnosed to when you started treatment..?? 

xxxx

Abnormal smear - servere 

27th April 2017 - Colposcopy biopsy done. 

20th May 2017 - result from biopsy CIN3

Next appointment 30th May 2017 

LLETZ done under GA 2nd June 2017

Fudge 04

 Hi new to this.

Not sure how to submit a new comment or question?

I had Lletz ( loop) 27th April Had light bleeding after  heavier period than normal but all settled 

All Bleeding stopped just after 2 and a half weeks.  waiting another 3 days so almost 3 weeks to have sex with fiance. All was fine. No bleeding or pain.  

Waited another 4 days for 2nd time so 3 and half weeks post lletz. A little painful this time so stopped.  

Been bleeding for 2 days now. Not heavy but red blood, not smelly and no pain. 

Is this normal or should I contact GP on Tuesday as bank holiday here tomorrow? 

My advice leaflet said no sex for at least 2 weeks or til bleeding had stopped. Followed that and left a few more days after. 

Concerned I have had sex too soon or got an infection but like I say not heavy and no smell. 

Please advice I suffer from anxiety and have found all of this difficult.  

Thank you 

 

Kathryn88

Aww Bekah, I'm sure Philleepa is right about the other symptoms being anxiety. I know because on the first appointment with my gynaecologist he did a punch biopsy then sent me for blood tests and a chest X-ray. Anyway, I had pains in my left lung for 3 whole weeks, it was actually a pain in my back but I was convinced it was coming from my lung. 3 weeks later I went back for my results which showed cin 3 from the biopsy with all the other tests including my X-ray came back normal....as if by miracle the pain in my lung disappeared! I know there's no point in telling you to try not to worry, it's only natural but try and keep busy so you don't get chance to over think things xxx

bekah1986

Thank you for your reply Kathryn, 

Did you have CC symptoms at all before going for smear... If so what were they and how long did you have them... 

What stage were you diagnosed..?? 

Where are you based..?? I'm in London...

Bekah. xxx

 

Abnormal smear - servere 

27th April 2017 - Colposcopy biopsy done. 

20th May 2017 - result from biopsy CIN3

Next appointment 30th May 2017 

LLETZ done under GA 2nd June 2017

Stormchaser

Hi Beka,

Please try not to stress hun, easier said than done though. First of all, as Phileepa said, you are not silly or naive, ladies bits are always leaking and doing all sorts, and it doesn't mean you have cc.

In answer to one of your questions, cc can potentially be diagnosed from a punch biopsy, as the results of mine showed focal microinvasion, so I then had a cone biopsy rather than a LLETZ, I think as they can be more sure of the margins from a cone. I ended up being staged 1b1.

It is very easy for your mind to play tricks on you, after I had had my scans and was waiting for my staging I was convinced that it was going to have spread further, like you I felt that I had a lump in my throat, and that was a bad sign, that lump is gone now, as Phileepa said, probably just anxiety.

Try to keep yourself busy, and try not to think about it, I hope you can get your LLETZ soon, and hopefully your mind can be put at ease. Hugs to you!

March 2017 - smear showed CIN 3

March 2017 - colposcopy and punch biopsy taken, biopsy shows microinvasion

April 2017 - cone biopsy performed, most of tumour removed, but margins not clear, staged as 1b1

June 2017 - radical hysterectomy performed, nodes are clear.

December 2017 - VAIN 3 found at check up

March 2018 - excision shows adenoma, no need for concern

July 2018 - smear shows VAIN3

September 2018 - 8 rounds of brachytherapy

December 2018 - clear smear

March 2018 - clear smear

Kathryn88

Hi Beka,

i had clear watery discharge for about 3 weeks and then suddenly bled a lot after a bowel movement...I phoned the gp next morning but had to wait 3 weeks for an appointment. During that 3 weeks the discharge became pinkish and I felt like heaviness in my pelvic area. When he examined me I bled loads and said he could actually see the tumour on my cervix causing the problem and it looked like I had an infection in it which is probably why the symptoms suddenly started...I hadn't even contemplated cervical cancer at that stage because I didn't think I was high risk (which is why it's counter productive for websites to keep putting their judgemental risk factors up, truth is we're all at risk!) In hindsight I have had some symptoms for a couple of years, bleeding after sex but only on 2 occasions which I brushed off but mainly the odd spot of fresh blood after a bowel movement so I thought I must have had haemorrhoids! The gp gave me antibiotics and my symptoms had all gone when I saw the gynaecologist 8 days later. With the discharge I thought it was just hormones but was scared it might be other types of cancer, I'm actually glad it is the cervix because it's so treatable! It was the pet scan that actually confirmed cancer, they'd arranged for my oncologist to attend my lletz and eua because of it. I haven't actually been given a stage but showed all the scans and told that it's 5cm and is confined to the cervix and just the top part of the vagina so I believe that is 2b, I've also got 1 lymph node involved. I've also been told it's squamous cells, I don't know if he just knows from visually recognising them because I doubt if the results from my lletz were back in time for when I saw him and like I said my previous biopsy only showed cin3. I've felt stupid that I haven't been going for smears and this is all my own fault, it could have been caught a lot earlier if I had but there's no point thinking like that, I can't turn the clocks back, all I can do now is urge other people not to make the same mistake as me! I never go to the doctors (my other half had the snip years ago so no need for me to be there getting contraception which would have forced a smear on me) but was there October last year getting vaccinated because we were going to the Amazon and the nurse had a right go at me for ignoring my smear letters and tried to get me to have one there and then which I declined! I have told myself 5 months wouldn't have made a difference with it being so slow growing but who knows! I'm in north wales, just a couple of miles from the Shropshire border Xxx

GillyPPP

Please try not to worry. They've taken a punch biopsy and said cin3 which is PREcancerous. I assume the appointment on the 30th is the LLETZ to remove the abnormal cells? Sounds like you're in a good place and they're just going to remove them. They'll test the bit they remove to make sure and if it is cancerous, it sounds like it's early. I'm no doctor, I know...

I went out of my mind with worry and kept looking at my daughter (2.5 years) and bursting in to tears thinking I was going to be dead by Christmas. After my diagnosis whilst I was in the midst of my staging scans, my GP rang me and explained that cervical cancer is slow growing, and years ago they just used to monitor it as sometimes it even went away on its own! These days they treat it. 

Id been having bleeding from sex from sex and was diagnosed stage 1b. Currently awaiting treatment.

the not knowing for certain where you're at with it all is the worst bit. I imagined I was riddled with it and was getting a pain in my abdomen, a cough which I obviously thought meant it was on my lungs...l went crazy! So I can relate. The call from my GP did chill me out a lot, but the fear was always there but I kept it in the background.

 Try not to worry yourself sick about it all. No ones said you've got cancer yet and if it is it is one of the most treatable.

keep thinking positively!

Let us know how you get on. We're all here for you. 

xxx

37 years old.

abnormal smear in my 20's, resolved itself. Normal smears since.

22.03.17- smear, abnormal.

20.04.17-colposcopy and LLETZ to remove what looked like high grade cells.

03.05.17-cervical cancer thought to be stage 1b. Margins not clear at sides.

MRI and CT.

12.05.17-confirmed not spread, confirmed stage 1b.  adenocarcinoma. Lymph nodes appeared normal size. offered radical Trachelectomy with lymph node removal to check them for spread.

 31.05.17 MRI with the magic wand up the foo.

9.06.17 examination (EVERYWHERE!) under general anaesethic. Biopsy from womb taken.

30.06.17 non-radical trachelectomy.

13.07.17 lymph nodes clear. :-)

bekah1986

Hi Stormchaser, Kathryn and Gilly, 

Thank you all for your replies, it is amazing how many supportive ladies there are on here... 

I went to A&E yesterday about the lump in my Throat and the ENT doctor who came down to see me said that I have a lump on my voca cord and some lumps at the back of my nose... She is sending me for a MRI via the 2 week pathway but she was unable to tell me it these lumps were cancer or not... 

I went there for reassurance that the feeling was all in my head and I have now found out that it is not and there are lumps... I am now convinced that I am going to get a definite diagnosis and I believe  it has already spread to my neck... Meaning I could already be stage 4b...!! 

I havent slept in days struggling to get 2 or 3 hours, last night I only managed an hour and a half... 

I have a meeting at the colposcopy clinic tomorrow to talk about treatment for the CIN3 but I think when I get there she is going to tell me I have cancer... 

I had already got my head around CC but the thought that it very well could be terminal petrifies me.... 

Do any of you lovely ladies have any ideas on how I can get some sleep as im not coping at all... 

xxxx

Abnormal smear - servere 

27th April 2017 - Colposcopy biopsy done. 

20th May 2017 - result from biopsy CIN3

Next appointment 30th May 2017 

LLETZ done under GA 2nd June 2017

GillyPPP

hi bekah,

See what they say tomorrow. The two things could be unconnected. 

Maybe ring your gp in the morning to see if they can prescribe you something. My GP said he would if I was still in a bad way when he I next followed up with him. 

Let us us know what they say tomorrow at your appointment. I'll keep my fingers crossed it's good news and puts your mind at rest. 

X

37 years old.

abnormal smear in my 20's, resolved itself. Normal smears since.

22.03.17- smear, abnormal.

20.04.17-colposcopy and LLETZ to remove what looked like high grade cells.

03.05.17-cervical cancer thought to be stage 1b. Margins not clear at sides.

MRI and CT.

12.05.17-confirmed not spread, confirmed stage 1b.  adenocarcinoma. Lymph nodes appeared normal size. offered radical Trachelectomy with lymph node removal to check them for spread.

 31.05.17 MRI with the magic wand up the foo.

9.06.17 examination (EVERYWHERE!) under general anaesethic. Biopsy from womb taken.

30.06.17 non-radical trachelectomy.

13.07.17 lymph nodes clear. :-)

Stormchaser

Please let us know how you go today Bekah, and I agree with what Gilly said above, if you aren't able to sleep, ask your GP if they will give you something to help, sleep is so important. xx

March 2017 - smear showed CIN 3

March 2017 - colposcopy and punch biopsy taken, biopsy shows microinvasion

April 2017 - cone biopsy performed, most of tumour removed, but margins not clear, staged as 1b1

June 2017 - radical hysterectomy performed, nodes are clear.

December 2017 - VAIN 3 found at check up

March 2018 - excision shows adenoma, no need for concern

July 2018 - smear shows VAIN3

September 2018 - 8 rounds of brachytherapy

December 2018 - clear smear

March 2018 - clear smear

More Information

Cervical cancer