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hello to the new people!

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laluce

Hi everyone
I'm new to this board, I've come to compare notes and stuff... and hopefully to make some friends and get some (and give out some!) support and comfort from others.
I had grade 1b cervical cancer diagnosed in July last year, had a radical hysterectomy in August, then needed to start chemoradiotherpapy in October last year. I have got to wait until May for my first check up and I'm getting more terrified by the day. Has anyone got any advice on how to cope with all this waiting!? :?
Love Lucy

Grade 1B, rad hyst, chemoradiotheraphy & brachtherapy - Aug 2009

Discharged March 2013

funlovingal264

Hi
I joined this site a year ago and although i have logged on many times i'm more of a reader than a poster! I am due my smear in a couple of weeks, this will be my second one since i had a cone biopsy to treat severe cin111 which then came back with a small area of cancer.

Magial Leigh Leigh

Hello,

Joined this site today after being told about it by my nurse. Was diagnosed with cervical cancer in Nov 2009, had 5 weeks of chemo and radiotherapy then 3 weeks of brachy. Just had first check up and everything seems good so far, been a hetic few months!

July 2007: 2nd Clear Smear
Nov 2009: Diagnosed with Cervical Cancer Age 27
Jan - Feb 2010: Chemo, radiotherapy, brachy therapy
April 2010: Check up - Tumor gone
May 2010: MRI Scan- to see if Cancer has gone completely

Kate79

Hi everyone, i'm new here! this is my story :( sorry it's an essey :oops:
I got a sinus cold at the beginning of Feb and at the same got my period, which at the time was abit strange, spotting, then nothing then heavy so this was strange as i'd always has normal periods from the age of 13. During my cold i was getting lower back pain and also in my hips and cocyyx bone (or at least that's where the pain appeared to be). In the end i went to my GP as i was a little concerned and she said your smear is overdue (i had never had one and now i feel very very angry to myself about it :x) she booked an appointment for the next day,which i had plus i had swabs done too. She did the smear and said my cervix looked healthy but during the smear i was bleeding alot. She also did an internal and said my womb felt "bulky" and thought it maybe fibroids so she would arrange for me to get an internal scan. During this time my pain was getting worse and i kept going back and telling her this and she kept upping my painkillers. I finally got my appointment for my scan went for it and it came back clear. In the meantime i also had some bloodtests done and they also came back clear. And also my swabs showed i had bacterial vaganosis so i had antibiotics for a week and the smell i had went away. After all these came back i went back and told her how much pain i was in still, she upped my medication to perscription co-codemol. Finally my smear results came back and showed i had CIN3 which i panicked about and booked to see the doctor again. I discussed my results with her and said i was scared i had cc and she said don't worry you haven't at all, i said i was terrified she said no need you have NOT got cc. I was still in agony at this point so i was sent for an x-ray which came back clear. Because my smear came back abnormal i was booked in for a colposcopy, I went for the appointment, was waiting 40 minutes to get in, finally got in the seat to be told the machine is broken. So they couldn't do one that day. They booked me another appoinment 1 MONTH AFTER! i thought given the circumstances of CIN3 it would be alot sooner! Anyway during this time my pain was getting worse so went back to the drs and saw another gp who examined me and referred me to physio!! Finally got new appointment through (that was last week) so was scared to death again as didn't know what ti oxpect! When she had finished she said she didn't like what she saw and was very worried! Had to wait a week for biopsy reults back which was very distressing and in the mean time had an MRI. I went Fri and they told me i have 3b :( Got an appointment at Cristies next week so see what will happed next. Obviously i'm really scared and it would be nice for you ladies to share experiences with me so i know i'm not alone! 8)

Feb2010 - Servere dysk & pelvic pain
Apr- Colp, biopsy & MRI CC 3B
May-June 28 radios
No chemo/brachy
Oct -MRI,Tumor still alive plus lymphnode in stomach
Nov10- Mar11 -T/ment - 6 chemos carbo/taxol plus cediranib drug trial
Treated @ Christies.

CatherineH

Hi joined today after being diagnosed with VAIN3,

Have an appointment with an oncologist on Monday 24th - am really afraid to hear what he has to say.

I have had abnormal smears for many years and have had laser treatment but now I have been told I have VAIN3 and not many people seem to have this. I have read it can be caused by radiation to the pelvic area or immunosuppresant drugs and I have both after have had a bone marrow transplant several years ago.

I can't believe this is happening to me again.

Do any of you out there have VAIN3 - what treatment are you having?

Found this site whilst searching the internet for VAIN3 information.

Nice to find such lovely supportive people.

All the best to you all.

Catherine

garne

Hi Catherine,

I've just had surgery to remove an area of VAIN3. I had some sort of diathermy to remove the same area 6 months previously but it didn't work, hence recently I had it cut out.

I've just had a letter confirming it was VAIN 3 (this is like CIN but on the vagina rather than cervix and apparently it is more rare than CIN) the letter also said that they had found nothing malignant which was good news. I have to go for regular colposcopies (next one in 6 months) and apparently this is very important. Just so you know, the smear I had done at the same time as the last colposcopy was completely normal, hence the reason to have regular colposcopya once you get VAIN 3 diagnosed.

Hope this helps

Zina x

[size=85]CIN3 2000 - LLETZ GA.
CIN2 09/08, colp 11/08
LLETZ 03/09. All clear
Colp/smear /biopsies 10/2009 - VAIN3
Surgery Nov 2009
Colp Mar 2010- VAIN3
Surgery Apr 2010
Colp Nov 2010
Womb biop & scan Oct 2010
Lap due Dec 2010 (for irreg bleeding/pain)[

CatherineH

Hi Zina

Thanks for this. I had some VAIN3 surgically removed a few years ago but did not really understand what it was.

Now it has come back again - they found this through a routine smear.

So I will see what the oncologist says on Monday.

Fingers crossed - will let you know.

Hope things are good with you.

C x

MissP

Thank God I came upon your site completely by hazard!!! I am not in the UK so a bit out of touch with things but luckily I have the internet where I live out in the sticks of a small island off France!! I just had LLETZ treatment in the UK on the 1st June as here they don't have such treatment.......I am now a lot wiser!!! .....I had no idea about 'clear margin' results following LLETZ....the nurse specialist just told me I would get a follow up result in 6 weeks time but did not specify what this result would tell me, although I did ask her! I also have no idea what amount they took from me as nobody volunteered me that small piece of information and I didn't know to ask! I already know I have CIN III as I had a smear done here in France just to check the result of my last smear in the UK which just told me I had an abnormal smear that needed further treatment - but the gynaecologist I saw here in France seemed to be able to specify that it needed urgent treatment and was CIN III - along with telling me that i had a huge ectropion that needed sorting out too....this had never been mentioned to me before by the NHS although I have been having yearly smears with them for the last 8 years (varying results and mostly clear!!! but prob false negatives now I am a bit more savvy) after being referred to Gynae outpatients by the nurse at my GP's surgery who failed to get a 'proper' smear several times- and I guess as I never had any problems from it they didn't think it was worth mentioning!! Its all very confusing and worrying and there seem to be lots of grey areas...but it really really helps to read about what others have gone through !! I may well be in touch again soon as I started bleeding about 4 days ago.......seems stupid but I don't know whether its heavy bleeding or not as i usually use tampons and have never paid much attention to what comes out at that time of the month which unfortunately has coincided with when you seem to bleed after a LLETZ.....Thank you so much already for the information you have given me.....I hope I only have a small problem at the moment..and it makes me very sad to read all the other posts on here.........Bonne Courage to everybody and thanks so much again for all the information that this fab site has provided me with!!!

davina6970

Hi everyone,

Just joined today, have been browsing this forum for the last month or so and its been a godsend too hear other peoples stories and experiences. Been quite a rollercoaster so far and due for hysterectomy in a month, but I feel 'lucky' that this cancer has been diagnosed early and is very treatable, also lucky that I have two children and had already decided not to have any more so the news that it was preferable for me to have the hysterectomy wasnt as bad as it can be for others.

Anyway just wanted to say Hi and that if anyone wants too offer or ask advice, im here!xxx

Feb 06-Negative smear
07/05/10-Severe Dyskariosis results after smear
19/05/10-Loop Biopsy
11/06/10 Diagnosed cancer stage 1a2.
Hysterectomy planned mid July.

Tequila189

Hi everyone just wanted to reiterate what Davina said above...I`m also pretty new, only joined Jo`s last week and have already been posting...I`ve found it a godsend to me especially as I live so far away from the UK!

I was diagnosed with stage 2bcc in May and currently in second week of Chemo-Radiotherapy!

Jo`s seems like a great place to let off steam, whether you`re having a good or a bad day....

today was a good day for me xxx

sending lots of love to you all and sunshine from Mexico xxx

Oterlie x

2007 Last NHS smear, negative
May 2010 diagnosed Stage 2bcc Squamous Cell Invasive Cancer
28 x Radiotherapy, 5 x Cisplatin
4 x Brachytherapy
Lump in breast, Phylloydes tumour, Lumpectomy and removal of 2 lymph nodes 8/9/10
27/09/10 First all clear!!!!

Wishfulthinkin

Hello, have been reading this forum for the past 7 months, it was the best place to get information on CGIN, it being slightly less common than CIN.
Have just completed 6 cycles of chemotherapy, bit tough because they are treating more than one cancer, but still here. Tumours have shrunk by more than half, so good news.

Had tattoos last week ready for radiotherapy late July, after reading the possible side effects I am very nervous, one bit I thought ironic is that I had 2 booklets for the side effects of pelvic radiotherapy but only an A4 sheet for the lung cancer.

Anyway thank you Jo's trust for all the useful information and support you give to people.

August 2009 Colposcopy
September 2009 Cone biopsy negative
December 2009 admitted for abnormal bleed
January 2010 CGIN adenocarcinoma in situ stage 1 2 b
February 2010 Lung cancer stage 1 2 b
February Pleural cancer stage 4

LouLouH

Hi,

I just wanted to reiterate what others have said about how fantastic this site is and the relief that you feel when you have found it after all that searching.

It is comforting to know that others know how you feel, have walked the steps you are going to take and have come out the other end.

The stories and advice given to others offer support to everyone visiting the site and help keep that positive attitude going! :lol:

I look forward to talking to you more throughout my journey.

Lou

June 2010 - Diagnosed Stage 2b Adenocarcinoma N1

July 2010/August 2010 - 30 Radiotherapy & Cisplatin Chemo 6 cycles

Jan 2011- Pelvic Exenteration Feb - Clear margins = All clear 

May 2012 Metastasis confirmed told incurable 

June - Oct 2012 Carboplatin & taxol chemo and CIRCCa Trial

Oct 2015 - Radiotherapy for lymph node under arm

January 2016 - Remain stable but incurable - beating the odds x

nickyr

Hi,

I have just found this site while browsing on the internet and am so sorry that I didn't find it a year ago while going through my hospital appointments. I went to my doctor with a lump in my arm and tiredness that I just couldn't sleep off. He did a blood test and said he noticed I had never had a smear test and at 29 that wasn't a good thing. I know I should have been having them done but I always meant to have it done but for some reason kept putting it off. I had to make an appointment that day and had it done the following week, and so the rollercoaster began. Between colposcopies, Lletz treatments the whole lot I was diagnosed with Cervical Cancer and sent to see a specialist. I felt sick, I didn't want to die I was only 29 this wasn't supposed to happen to me I'm a good person , I try to be nice to everyone, I'm quite shy so forming relationships is hard but I try to be nice, I'm the girl they all ring for help or to look after the kids or give a lift somewhere cause I'm the girl who can't say no, I love to please. So with a smile on my face and my partner by my side I was determined to meet this head on but the problem for me was I didn't want to upset anyone, I cried alone and didn't go on about it cause it wasn't fair to be harping on about it. So I went to see my speicialist who was brilliant by the way I couldn't have asked for better and two weeks later had my cervix removed. I feel pretty mean as I haven't had to go through a lot of what you women have gone through and are still going through. I was one of the lucky ones and on the day we buried my nan from stomach cancer I went back to the hospital for my results and got the all clear. It was detected early and hadn't spread to my lymph nodes so no further treatment was needed. I am still attending hospital for check ups and am looking to the future. I would now love to have a baby with my future husband but our chances are low. I am so glad I found this site because now I feel that I can have a moan with people who understand and not feel bad for doing so.

thanks Nicky

Jessyroo

Hi Everyone,

I can only really echo what everyone else has said in their posts....what a fantastic forum! I had my LLETZ treatment last Monday after finding out I had stage CIN 2 Cells (during my exams too-wonderful!). I have been determined to be positive but I'm just feeling a little down today and have been looking for some advice/support. This forum is brilliant and I've found most of my questions have been answered without even having to ask them! I'm so glad there are other people going through the same thing (even though I wish none of us were going through it!). I live in Manchester so I'm hoping to attend the meeting there in October.

Thanks once again for everyone's amazing advice!

Jessica
xxx

mariebland

Hi to you all too. I'm just amazed that every time I read a post my worry lifts a bit more everytime! You lot are great! I've had lovely replies to my posts and my spirits are well and truly lifted! I'm also so sorry to hear of the ladies that have passed and would like to send love to their friends and families. Life is fickle you never know what's going to get thrown at you but with love and support can make the blows softer and the highs sweeter.
Much love,
Marie xx

12th July 2010 - 1st smear = abnormal .
10th August 2010 - colposcopy = CIN 3 severe & VAIN, no biopsies.
25th August 2010 - Lletz op under general. 2 biopsies taken.
30th August 2010 - after op waiting results.

Katnip

Hiya all... just joined today. Fab site!!! ((hugs)) to you al going through this journey!

I have just had my delayed follow up smear after I had loop diathermy last year (February)....CIN3..

August 2009 1st follow up was clear..... I then fell pregnant with Evie Rose (14 weeks old) and had my delayed follow up smear 2 weeks ago,,,, it has come back abnormal although only CIN1. I am scared though as I have had the old bleeding and pain again since Evie was 8 weeks old - like I had last year. Going to go back to GP on Tuesday and ask to be checked again in 3 months NOT the 6 they are telling me... I cannot do that waiting game again as I have Evie and Ollie (nearly 5 yrs old) to think about. Been put on Norethisterone again to stem the blood loss as I fainted in the garden on Monday morning (Thank God I wasn't holding the baby at the time)but it isn't working so far.....But I am upbeat and will tackle anything head on.
You are all inspirational women and I feel very humbles reading your stories - bless you all

Kat xxxx

ClareJo

Hello All,

Like so many on here I have been reading people's stories and battles and it has become a huge support....So "Thank You" x feel i should now try and offer my owns upport to others.
I was diagnosed with cin 111 and 1a cc on the 27th August,this was following my first recalled smear. Its all still sinking in and feels as if Im watching from afar.
I have a second Letz (I think I have missed a letter but sure you all know what i mean) on Wednesday 29th so hopeful, as my consultant is that all was removed and the results will show clear.

I have read every 1a story on hear i think and am so very grateful for the information and sleepful nights it has given me.

I will post my outcome. Take care all and stay positive.

Clare xxx

DLAF

Good luck Clare! I'm on the waiting list for a LLETZ as I'm having mine under general anaesthetic...the worst thing about this whole process from smear to (hopeful) recovery is the constant WAITING!

Ange1001

Hi have just joined today and im not sure where I should post! I had an abnormal smear (CIN2)and had to have lletz. I have a serious health condition and have to take warfarin so proir to lletz I had to start taking daily heaprin injections. After lletz Drs put me back on a high dose of warfarin and to cut a long story short I had a life threatening bleed had to have emergency surgery, blood transfusions etc. The change over from warfarin to heaprin also caused probs with my condition (Antiphospholipid syndrome) and i have only just recovered. I had lletz on 4th Aug, I got results which said 'the histology report shows no abnormalities' and was told to go for a follow up smear and colposcopy in 6 months. However I saw the doctor who did my lletz today for what was meant to be a check up following my troubles in hospital and he said i have to come back next month as he thinks some of the cells are left, he said i may have to have another lletz. I thought my letter meant that i was ok for now and so did my GP. Im freaking out now- LLetz is'nt routine for me I nearly died because of my condition. I feel like just ignoring it all -sorry if this is a bit rambling but I am so upset I really thought the worst was over. Thanks for listening and giving me somewhere to vent my frustration and upset. xx

KLM1980

Hi all

I did introduce myself on my first post, but here goes....

I had a routine smear test at the end of August (previous 'abnormal' results & treatment followed by annual recall on smears for 5 years) - the results came back as Severe dyskariosis / CIN III. I was due a Colposcopy and treatment of some kind 2 weeks ago, but had just come out of hospital and was recovering from viral meningitis, so had to delay. My appointment is now tomorrow afternoon. Feeling very nervous, but want to get it done so I know what they will do about it and if any further treatment is needed.

I am very humbled to read about the journeys many of you ladies have been on and am so pleased to have found somewhere where I can give and receive support to people going through what I am and much, much worse.

Katie xx

[color=#FF00FF]Aug 10 - Routine smear test
Sept 10 - Results - CIN 3
Oct 10 - Colposcopy & Biopsies taken
LLETZ due 18th Nov - postponed after pre op tests due to Supraglottitis
LLETZ done under GA 25th Nov
Results - CIN3 removed but unclear margins[/colo

ee104

Hi all,
Just to introduce myself, Ive just turned 24 and had my first smear in july which showed CIN3. Had a colposcopy then a LLETZ a few weeks later under local, which unfortunately showed cc.

The colposcopy doc said it was stage one and not in the lymphs but i have been referred for an MRI (supposed to be by the end of this week) so results should be back for my meeting with the specialists on monday to discuss my treatment. Not sure how the colp doc would know for sure it was stage one but surely he wouldnt say that unless he was certain....

Absolutely terrified about needing a hysterectomy as ive always dreamed about having a family - so sleepless nights until monday!! A little worried that i wont be able to cope if that is the outcome - a bit dramatic i know but, like so many other ladies have said, i feel i can really reveal what i am feeling on here.

I only found Jo's a few days ago and i wish id found it from my initial smear outcome, it would have provided me with the info i needed! As have been said before, any story ive come across gives me hope that i can beat this.

Ellie.
xx

Age: 24 2010 1st smear test, 'on a whim'- no symptoms. Stage 1B1 Cervical Cancer diagnosed. 4th November 2010- radical trachelectomy @ Queen Charlottes, West London 

juliew9855

My name is Julie and I am new here, its my pleasure to join this community to find some information and good friends here.

KirstyB

Hello everyone,

I have just joined this site, so far found it so helpful, I'm due to have lletz under ga next week (15th nov) so I'm reading up on what to expect!

Can anyone help me with how to set my signature? Have looked at FAQs but still can't work it out!

Looking forward to talking to you all.

Thanks

Kirsty

2002- Oophorectomy due to ovarian cyst
2004- Laporoscopy, active endometriosis
2006- Laporoscopy
2008- 2nd ovarian cyst
2010 May- Cervical ectropium diagnosed
2010 July- Colposcopy for ectropium abnormal cells found
2010 Nov 15th- Surgery under GA

florida susan

firstly let me welcome you to Jo's,
with regards to your signature go to user control panel above the purple stripe then profile then edit signature, hope this helps.
susan xxxxxxxxxxxxxx

grade 2 Figo stage 3b squamous cc march 2009 completed chemo/rad july 2009 with 2 Brachys Nov 2009 given all clear Jan 26th 2010 check up still all clear

KirstyB

Thanks Susan,

Think i've cracked it now, will see if it appears now!

Kirstyxxx

2002- Oophorectomy due to ovarian cyst
2004- Laporoscopy, active endometriosis
2006- Laporoscopy
2008- 2nd ovarian cyst
2010 May- Cervical ectropium diagnosed
2010 July- Colposcopy for ectropium abnormal cells found
2010 Nov 15th- Surgery under GA

midori

Hi everyone,
I'm so grateful to this site and reading the posts from everyone, its so much more useful to me than the NHS choices site which although helpful does not discuss experiences.

I have just turned 25, and had my first routine smear test in September. I had a letter saying they found abnormal cells and went for the colposcopy at the end of September. They confirmed there were abnormal cells and took a biopsy. I was very anxious as I did not hear anything for some time, and found that I had warts that were certainly not there before. My GP confirmed this and referred me to the sexual health clinic where I got some cream to treat these and fortunately they went after one week of treatment. It was only at the start of November that I got a letter from the colposcopy clinic saying I was to attend again for another appointment and I thought that this was just to examine the cells again as the letter did not say anything about treatment.

Unfortunately, on the day (today) I attended and had to wait 2 hours as the equipment was not working properly, though at this point I still did not know what I was there for. When I eventually went in, the doctor told me the cells were in fact CIN2 and she would treat them today using LLETZ. I broke into tears as I had no idea what was happening, I hadn't been told anything up to this point, and the thought of immediate treatment terrified me, having never had to go to hospital for anything before. The nurses were very nice and tried to calm me down but I had no idea what was happening and to be honest the doctor there did not make me feel at ease, me being sat there with my legs in stirrups as she showed me the loop. In the end I said I really didn't think I could do it today as I was not prepared and had nobody with me, and in tears throughout.

I have managed to reschedule for 7th December, but I am still incredibly nervous. I have to go to a different hospital so they could fit me in, so feel like I am going to be very anxious on the day. I asked about general anaesthetic but the guy on the phone who arranged it seemed not to want to do this, as it takes longer than the 20 mins it ought to, so I think I have to do it under local.

It is a lot more reassuring reading these posts, but I think it is the thought of injections for anaesthetic down there, then this electric loop, it just really scares me! Then of course the recovery period afterwards...

Thanks everyone for posting your experiences they are so so helpful.

1st smear September 2010
colposcopy September 2010
CIN2 LLETZ December 2010

EmmaJ

Hello and welcome to Joe,s - you'll find a lot of support and advice from all the girls on here.

Firstly, sending you big cyber hugs - what an awful day you've had :( . From my experience and those others who have shared their's with me on here, I have not heard of anyone going in for LLETZ whilst totally unaware of it. Although they often "see and treat" at the time of the colposcopy, if you have been called back for a seperate appointment it should have been made clear to you what it was for and you should have been advised to take someone with you for support and to drive you home afterwards. Although we cannot account for the poor bedside manner of some consultants (unfortunately!) you should have definately known they intended to do this procedure.

Anyway, regarding the GA/LA issue - I had my treatment under GA for 2 reasons - firstly because the area they needed to treat was so big they feared they wouldn't get it all under LA and secondly because the colposcopy had me in so much pain they would not have put me through anymore there and then. The nurse explained that GA is an option for either of those situations. I would try calling again to discuss the GA option, if you explain you feel far too nervous about being awake for the LLETZ, they really should offer you GA - many others on here have also had GA. If they do go ahead under GA it is very quick (I was only under for 20 mins) and it is done in day surgery.

Have yourself a nice bubble bath or treat yourself to something nice this evening and try to put todays awful experience behind you - and although they have treated you badly, try to be pleased that your cells have been caught early and will be removed.

Also, it is probably best to start your own post as you will get more responces.

Good luck and enjoy some R&R this evening!

Emma

[color=#FF00BF]6/12/09- abnormal smear - severe dysk/CIN 3
6/01/10 - Colposcopy - confirmed smear result
8/01/10 - LLETZ under GA
11/02/10 - results in, no clear margins!
23/08/10 Colposcopy and smear - ALL CLEAR!
Age 29[/color]

macbead58

Hi Everyone,
Thanks for the welcome - I just joined today. I had cervical cancer last year and after radiotherapy and chemotherapy I seem to have the all clear. I've been reading over the old posts here and so many of my own thoughts and fears have been experienced by so many other people - for the first time I feel I may come out of this with my sanity intact! I have been looking for a place or group to talk to others who have gone through this and when I asked my oncologist if he knew any support groups for survivors or something he said 'Oh that's so American (I'm Canadian), we don't tend to do that. Stiff upper lip'. I could have kicked him! It was my family doctor who put me onto Jo's and bless him.
I guess the fear stays with you and one has good days and bad days. Today is a bad day for me. Thought I had a UTI but the test said all clear except for tiny minute bit of blood - nurse said probably the beginning of cystitis, drink cranberry juice and if still worried (which she was very good about and said my worrying was understandable) to make an appointment to see the doctor. So now in my head I have bladder cancer even though I know this to be a silly fear. How do you all deal with the feelings like this - when does one just ignore it all or when should one panic? I think sometimes that as my treatment was straightforward and I wasn't sick with chemo, just fatigue was the worst thing I suffered, that the other shoe is still to drop if you know what I mean. Just me being silly and thanks for listening to the new kid's rant. My husband is great and has been my rock but there is only so much I want to burden him with so it is nice to find a group out there to talk to who know what is means and have been there.
thanks
Chris

LouLouH

Hi Chris,

Welcome to Jo's you will find it a great source of support and there is always somebody about that will listen and reply to you.
I cannot really help out in terms of long term feelings as I am only 3 months post treatment and unfortunately may have to have some more until I get the all clear but I just wanted to answer your post and say I am sorry that you are having a bad day.

Even this early on, and especially since my last consultation the aches and pains that I had last week and which I thought were nothing are now the cancer moving around my body. Silly I know but you cannot help the way you feel!

Keep drinking the cranberry juice and I hope tomorrow brings a good day.

Love
Lou
X

June 2010 - Diagnosed Stage 2b Adenocarcinoma N1

July 2010/August 2010 - 30 Radiotherapy & Cisplatin Chemo 6 cycles

Jan 2011- Pelvic Exenteration Feb - Clear margins = All clear 

May 2012 Metastasis confirmed told incurable 

June - Oct 2012 Carboplatin & taxol chemo and CIRCCa Trial

Oct 2015 - Radiotherapy for lymph node under arm

January 2016 - Remain stable but incurable - beating the odds x

macbead58

Hi Lou,
Thanks for the words of support and back at you! Hope it all goes well for you. Sometimes I wish I could turn my mind off! I find somedays no matter how busy I keep myself my thoughts let me down but it's still early days for us both I guess. As the song says 'Things can only get better' - my new theme tune as I tuck into the cranberry juice!
Chris

LouiseUK

Hi Chris, welcome to Jo's. I am almost six months post op and still extremely fearful of a recurrance as I know many ladies are. Every time I feel unwell or have twinges I think 'what if?' I think it's only natural to feel like this and I know some have found counselling helpful, but I haven't gone down this path yet.

I think I try to focus on living as healthily as I can and try and have faith in the medical care I was given. Your doctor sounds like a jerk by the way! :D

Hope your cystitis clears up - I think bladder problems post radiation isn't uncommon and I'm sure others will share their experiences with you.

Take care and stay in touch

Lots of love
Louise xx

Laser treatment 95/96 for mild to moderate CIN. All clear smears until March 2010 then diagnosed CIN3. Biopsy showed cc 1b2 grade 3, RHND on 9/6/10, 16 lymph nodes removed. Given the all clear on 22/6/10 - no further treatment!! :D

macbead58

Thanks Louise,
Yeah I know about the twinges - I live in fear of becoming a hypochondriac, I guess we all do. My GP is great and sees me at the drop of a hat to sort me out and I have faith that if he thought I needed to see about something he'd send me on. And only one of the oncologists I see is a jerk! The other is great and very helpful but on checkups they seem to alternate. I seriously thought about asking never to see him again after last time but the clinic is always so busy I don't want to make waves. I've had 4 checkups since my treatment ended and the next is January and so far so good. :D It's one day at a time.
Thanks for you kind words and words of welcome. I am so glad I found you all.
Chris

den153

Hi all, im another newbie :(
had 1st smear at 20, results came back abnormal borderline, went back 6 mths later, same result, im now 25 and havent received a clear result yet. Ive had 3 colposcopys, 2nd came back at cin 2, told to come back in 6 months, 3rd colposcopy last tuesday, cin 3, but have to wait 4 weeks for them to send me a letter, no treatment talked about yet....why not?? at cin 3 im getting very worried, would like to start a family, but dont want to with all this hanging over me. ive found all ur posts on here helpful, i dont feel alone.

Pepsidoodle

Just popping in here to say hello
Have browsed before, but thought I'd better register

It is really nice to find a supportive forum where people at all different stages can be

?? 06 Cervical Erosion;
11 09 Abnormal smear;
12 09 Colposcopy=CIN-I;
06 10 Colposcopy-discharged 2 GP;
12 10 Abnormal smear-mild changes;
01 11 Colposcopy & biopsy "high grade";
03 11 LLETZ result=CIN3;
6&12mth smears=normal

mark74

Hi all,
My partner 25 years old has been diagnosed with stage 4, she has started chemo but i just dont know how to support her, its nice to see such support for those going through this hard time but partners can play a big part in making it easier i know everyone is different but a little help with how to encourage when they are down as all i seem to do is put my foot in it. I have found alot of the post useful and everyone here needs to feel proud that you are providing a service beyond compare.

Many thanx

Sunday

Hi Mark

I'm so sorry you and your gf are going through such a tough time. I sometimes I think I forget how my bf feels about it, and how it affects him. I think it is absolutely lovely that you have sought support, and maybe your gf would feel pleased to know you have.

My personal situation is different in that i havent got cc, but I still can appreciate the feelings. Everyone is different but for a lot of time I felt my bf didn't understand the stress, worry, seriousness and degradation that this situation can cause. In reality he was just trying to be brave for me. In the end I had to ask him to stop being so brave all the time and however much we try to carry on as 'normal' things aren't normal.

My best bit of advice would be to talk openly and honestly about everything you are both feeling, whilst remaining sensitive to areas that either of you don't feel ready to talk about.

There are (unfortunately) quite a few ladies on here in a similar position to your gf and I am sure some of them will be able to give you more specific advice, and maybe talk you through things that your gf doesn't feel comfortable.

Finally (I will stop rambling in a minute) you should be proud of what you have done in taking this step. I am sure any of us here would feel pleased to know our partners were doing the same. As long as you tell you gf that you will be on this awful journey together I am sure she will be happy. Oh, and don't worry about the times where you feel like you can't do anything right because just by letting her snap at you, you are supporting her.

Anytime you need to talk feel free to PM.

Best wishes to you both xxxx

moderate abnormality Jan 11
Colp & biopsy 18 Jan 11
Cone loop by GA 18 Feb 11
Results: CIN3 removed 11 March 11
Aug 11 & Feb 12: Clear
Diagnosed with PCOS and Endometriosis after CIN banished!

Tequila189

Hi Mark

Welcome to Jo`s, you are being very supportive just by coming on here, so its a good start. I`m sorry you have a reason to be here though and that your partner has been diagnosed with stage 4! I myself was diagnosed with stage 2bcc and then stage 4 when they though it had spread to lymph nodes. I`ve been through Chemo, radiotherapy and Brachytherapy which are all the norm cervical cancer.

I think as a partner the best you can do is be there for her and look after her as much as possible. Make sure that any questions you have get written down, I had a little notebook and still use it for my check ups. I or my hubby used to write down any questions we had before the appointment with the oncologist otherwise we would forget them when we got there, especially me as I had chemo brain, memory like a fish!!!!

We also looked into alternative remedies, not as an alternative to Chemo or Radio but as a booster to the immune system.

I was treated in mexico as we live here, and over here I was given a diet which was a huge help when I was going through Radiotherapy and Chemo and I also took, and am still taking some herbal remedies. If you are interested you can pm me and I`ll send you the diet. I`m not sure how many Chemos your partner will have if it is Cisplatin, it is usually 5 or 6, make sure she drinks lots of water, I was going through 4 a day as it flushes out the kidneys.

In the meantime just be as positive as you can for her, and understand that there will be days where she is down its completely normal. Its an emotional time for both of you and sometimes can be harder on the partner than the patient, if you can plan some short outings for you to go on it may help and take her mind off things!

I`m sending you lots of positive vibes and will keep you in my prayers

Lots of love

Oterlie x

2007 Last NHS smear, negative
May 2010 diagnosed Stage 2bcc Squamous Cell Invasive Cancer
28 x Radiotherapy, 5 x Cisplatin
4 x Brachytherapy
Lump in breast, Phylloydes tumour, Lumpectomy and removal of 2 lymph nodes 8/9/10
27/09/10 First all clear!!!!

JessHessing1989

hello there

Pepsidoodle

Hello to both of you

I hope you find the site helpful

(I think there is something somewhere about posting guidelines....but there aren't many rules lol)

?? 06 Cervical Erosion;
11 09 Abnormal smear;
12 09 Colposcopy=CIN-I;
06 10 Colposcopy-discharged 2 GP;
12 10 Abnormal smear-mild changes;
01 11 Colposcopy & biopsy "high grade";
03 11 LLETZ result=CIN3;
6&12mth smears=normal

xRx

Hi, I'm new, this is my first post, although I have been following the posts for the past week or so, and it is amazing to see how lovely and supportive everyone is of each other despite what they're going/been through :)

I went for my first ever smear test at the end of January (I'm 20, I live in Scotland) which I found really painful, although I also find sex painful and usually bleed afterwards so I guess it was to be expected, and received a letter the following week referring me for a colposcopy. I had this on the 18th March, about 4 weeks after my smear, and found that although it was quite painful for me it was a lot easier and quicker than I had expected (thanks to all the horror stories on google, lesson learnt...!) At the time of the colposcopy, the doctor told me that I appeared to have moderate dyskariosis, and that she would have to wait for the results of the biopsies, but she expected that I would need diathermy to remove about a 1cm cube area, and she would rather do this under general anaesthetic. That was almost 2 weeks ago, and since then I can't think about anything else, the waiting is definitely the worst part, can't wait for it to be all over, although I realise that so many of you have gone through so much more. So enough about me, just wanted to check in and say how much I admire everyone for the way the look after each other, and thanks for keeping me sane, even if nobody knew it, I've got a lot of great, reassuring advice from the site over the past few days :)

R xxx

Jan 20th '11 First smear
Feb 1st '11 Letter saying abnormal cells
Mar 18th '11 Colposcopy and biopsies
Apr 6th '11 Biopsy results - CIN1
Colposcopy and biopsy scheduled for 6 months time, CIN left to see if it will return to normal

LouiseUK

Hi R

Just wanted to welcome you to Jo's and say you have found the best place for information advice and support. I'm so sorry you're going through this, especially at such a young age, but sadly you are not alone. At least in Scotland they do start smears at 20 unlike England where people have to wait until they are 25. Too late sometimes :(

Everyone would agree about the waiting, if only they could find a way round it! Hopefully it won't be too much longer until you hear something.
Let us know how you get on,

lots of love
Louise xx

Laser treatment 95/96 for mild to moderate CIN. All clear smears until March 2010 then diagnosed CIN3. Biopsy showed cc 1b2 grade 3, RHND on 9/6/10, 16 lymph nodes removed. Given the all clear on 22/6/10 - no further treatment!! :D

Jules35

Hi All,

This is my first post, being hanging around in the background for a bit, picking up some information and also just been finding it really helpful to know that other people are out there. It's quite difficult sometimes to talk to people about what you're going through and sometimes think I'm nagging my poor husband to death.

Anyway just wanted to say "Hey"

Jules
x

Dec 10 - Abnormal smear
Jan 11 - Colposcopy & Biopsy
Feb 11- CIN3 & CGIN Confirmed
Feb 11 - Cone Biopsy
Mar 11 - Unclear Margins & MRI Scan - small tumour found
Apr 11 - 2nd cone biopsy on 29th April
May 11 - All clear, 6 monthly colposcopy

katalina

Hi everyone,

I've been a bit of a lurker for a while, but thought after my experience today I'd sign up so I could chat/moan about it without burdening others!

I had my first smear this time last year-ish, which was CIN3, that was removed by LLETZ. My 6 month check up after that showed CIN1/2 boderline so they took a biopsy and asked me to come in 4 months later - which was today.

On my 6 month check up I nearly passed out in the changing room after, but today they took 4 sample biopsiesand afterwards I just went totally off colour, hot as anything, nearly fainted then vomited everywhere..has this happened to anyone else!? Now just waiting for these results, should they be CIN2 or 3 she is going to do another LLETZ procedure.

I'm just freaking out a little bit by reading people's signatures of procedures/complications they've had. So many horrible things to read.

Anyway hopefully I can come here for support and also offer some!
Kat xxx

May 10 - smear CIN3
June 10 - LLETZ
results - all clear
Jan 11 - 6 monthly coloscopy - CIN 1/2 borderline
April 11 - coloscopy/biopsies and the like
April 11- CIN1 (phew)
Oct 11 - Check up!!

Jules35

Hi Katalina,

Sorry that you had such a bad time at your check-up and I hope everything goes well for you.

I know what you mean about the hot/sick/faint thing, it happened to me when I had my first colposcopy/biopsy and had to spend a good ten minutes afterwards still on the couch with my feet on the nurse's shoulders. Not my most dignified moment!! :)

Sending you lots of hugs

Jules
x

Dec 10 - Abnormal smear
Jan 11 - Colposcopy & Biopsy
Feb 11- CIN3 & CGIN Confirmed
Feb 11 - Cone Biopsy
Mar 11 - Unclear Margins & MRI Scan - small tumour found
Apr 11 - 2nd cone biopsy on 29th April
May 11 - All clear, 6 monthly colposcopy

Sunday

Hey Katalina!

I think colposcopys and the like are very emotional experiences, and quite unnatural for us. To be honest though, the way you describe yours was very much like the first time I tried contact lenses!!! I think the whole thing affects everyone differently. Physically I was fine, and after I waltzed out of my colp, but during I went to pieces and cried, I even tried singing "my favourite things" but even the power of the sound of music couldn't help me!

Honestly honey you are not alone, and like Jules said, the dignity of it all is not the best!

Good luck with your results xxxx

moderate abnormality Jan 11
Colp & biopsy 18 Jan 11
Cone loop by GA 18 Feb 11
Results: CIN3 removed 11 March 11
Aug 11 & Feb 12: Clear
Diagnosed with PCOS and Endometriosis after CIN banished!

katalina

Aw thank you Jules and Chunk! It's so nice to see how good to each other everyone is here. You're both right, I think I've lost most of what little dignity I have left haha.. being pushed on a wheelchair whilst vomiting and bleeding(!) through a hospital corridor tipped me over the edge! hehe.

Kat xxx

May 10 - smear CIN3
June 10 - LLETZ
results - all clear
Jan 11 - 6 monthly coloscopy - CIN 1/2 borderline
April 11 - coloscopy/biopsies and the like
April 11- CIN1 (phew)
Oct 11 - Check up!!

linzig

Hi, I'm new, just joined today. Am a bit worried as I have moderate cells and am waiting my colposcopy. We have lots of breast and cervical cancer in our maternal side of the family which makes me more nervous. I also have two little girls aged 2 and 3 and am terrified of anything happening to me. We are going on holiday next week for two weeks, my colposcopy was due the day before we were to fly so I put it off until the day I come back. The clerk said she thought it would be okay but as they have strict treatment deadlines she had to check with someone else. Now I am wondering if I have been irresponsible. I :?
I went to the GP last year as I bled after sex and also randomly throughout the month and had lots of low back pain, I went for an ultrasound to see if I had fibroids but that came back clear, I did not have a smear at that time. The abnormal result came as a big shock.

23 May 2011 - LLETZ - CIN3
13 December 2011 - 6mth smear - awaiting results

claudia_n

Hi everyone, I'm relatively new to this site and it's great to find somewhere where you can read other peoples stories.
I was diagnosed with cervical cancer in February this year (aged 25) and had a radical trachelectomy in March. Unfortunately the results from this op have been inconclusive, the hospital have been unable to confirm whether the cancer has gone or whether it might have spread - something about the rare positioning. I was given the option to do nothing and have regular check-ups in case it has spread or comes back, have further surgery, or go straight to radiotherapy - a very difficult decision to make when there is little evidence of previous cases like mine (as my mother pointed out, I always was a difficult child! :wink: )
Last week I decided to go for the surgery option, and I'm booked in tomorrow morning for more exploratory surgery. I am very nervous, am sitting at work not being able to concentrate on anything. I am hoping that this will give me a clearer indication of what route to take - either being confident enough to leave it and have regular check-ups, or if cancer is still present then go for radiotherapy as a more extreme option.
Anyway I have asked the hospital for a referral to a counsellor once I am back on my feet so I can talk everything through, but this forum seems like an excellent place to use as well. I look forward to learning more

Claudia x

LouiseUK

Hi Claudia
just wanted to say 'hi' and welcome to Jo's. Glad you have found us!
Sorry to read what you have been through and what you are still facing. i think you'll find a lot of useful advice here, plus hear from others who have had similar experiences.

If you have any specific questions you might be best startting your own thread.

Take care, lots of love
Louise xx

Laser treatment 95/96 for mild to moderate CIN. All clear smears until March 2010 then diagnosed CIN3. Biopsy showed cc 1b2 grade 3, RHND on 9/6/10, 16 lymph nodes removed. Given the all clear on 22/6/10 - no further treatment!! :D

Em_26

*waves*

Hello Ladies!
I'm new to all this but have found other ladies experencies very helpful as I'm in the same boat. I'm feeling unable to talk to my freinds and family about it as I dont want to worry them nor do they understand it.
I had my first baby 5 and a half months ago and had my first smear at 27 years old. My baby was 4 months old then (you cant have a smear until 3 months after giving birth) and severe dyskaryosis was found. Waiting on my biopsy results which I'm finding really hard as I'm a bit of a control freak and at the moment I have absolutely NO control!! Thank god I found this forum as its already been making me feel better informed as to what will happen etc.
Em xxx

Mar 11 - 1st ever smear at 27yrs old
Apr 11 - CIN3
Apr 11 - Colposcopy + punch biopsies taken
May 11 - CIN2
June 11 - LLETZ
June 11 - CIN3 but clear margins
Dec 11 - 6 month repeat smear - all clear