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Smear missed my cancer- anyone else out there the same?

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louloupop
Smear missed my cancer- anyone else out there the same?

Hi Ladies

 I have recently had a radical trachelectomy and lymph node removal and I thank god every day that I was even eligible for this procedure.  I was told afterwards that I had been just on the upper cusp of eligibility, otherwise it would have been a hysterectomy.   I was diagnosed at the start of dec 2012 and my previous smear less than 16 months before my diagnosis was normal.  I had been bleeding between periods and my periods were lasting longer than usual, also bleeding after sex.  At the time I convinced myself it was down to stress as I was in the run up to my wedding.  When I mentioned it to my GP she agreed.  It continued after my honeymoon so I went back to the GP.  She said it was nothing to worry about. I had a gut feeling something was wrong, I was persistent so she did another smear and referred me to a gynae consultant. I waited for an appointment but eventually booked a private consultation as I was so worried and knew something was really wrong.   Turns out I had a 3cm tumour on my cervix.   The smear which was taken on the tumour the day I went to my GP came back as 'borderline changes'. And that was on actual cancer tissue.   Anyone else had a similar experience?

andreac
andreac's picture

Hi there,

you poor thing...I understand how confused and worried you will be right now.  I had a similar experience in that I always had regular smears and in March 2012 I had borderline changes and was told to go back in 6 months.  I went back in Sep 2012 for the followup and was immdediately referred to hospital there and then before they had even sent the smear off for analysis.  Anyway I was then diagnosed with cancer stage 2b so not even early cancer!  I have been trying to understand why this happened but the focus was then just on treatment and getting well so I put all my energy into this.  Yesterday I had my first checkup following treatment end and asked the consultant about my situation. Because I have adenosquamous carcinoma, my cancer has started higher up in the cervical canal and this is less easily picked up on smears so the tumour was growing undetected probablly for years as its quite slow growing, before my surface cells were affected.  I had no classic symptoms as you have had either apart from lower back pain which I just put down to getting older, having kids (back was never the same) and having a job where I sit a lot...never crossed my mind it was a cancer symtom.

What happens now for you?  Are you continuing with private care or going via nhs?  I would ask them to write down the type of tumour you have as this may explain your experience and the "delays" in picking it up.  Just a shame that no-one really listened to you and you were forced to go private for answers.

Let us know how you are and hope I have helped a little bit

x

Smear Mar 2012 - mild changes Smear Sep 2012 - polyp & abnormal result Colposcopy,hysteroscopy, lletz Sep 2012 11 Oct 2012 - diagnosed adenosquamous carcinoma 11 Oct 2012 - staged at 2B - 5 wks chemo/rad, 3 brachy - ended 27/12...ALL CLEAR 9/4/13!!!!!

louloupop

Thanks so much for replying, it's great to hear from you! 

 My diagnosis was adenocarcinoma 1B1, close to 1B2 but thankfully still (just) in the first group.  I am beyond thankful that I was eligible for trachelectomy, I am just married and we have no kids, so would have been devastated if I had a hysterectomy or radio/chemotherapy.  My consultant was incredible, and the lymph nodes they removed came back clear, another huge blessing!!   I guess I am now freaking out that even if they continue to monitor me every 4 months as planned it could be missed again. Have to say I'm not really confident in the smear at this stage, if they can swab cancerous cells and show borderline changes? Even my GP couldn't believe that result.    It really worries me for the future!    I only went private for my initial consultation as I could stand to wait weeks to see someone.  Then I continued to see the same consultant on the nhs.  Defo wouldn't pay to go private for an op, wish I had that kinda money lol xx

andreac
andreac's picture

Sorry - now I re read I can see that you have already had treatment, doh!! Thats what treatment did to my brain lol!!  Sounds then like its the "adeno" type of cancer which is harder to detect so I would imagine this would be same as what happened with me.  I asked my consultant the same questions yesterday about how often I would be monitored and discussed my fears that this could come back and not necessarily be picked up.  He just said they would check me every 3 months to begin with and that ladies with a reoccurrence would see symptoms start up but I never had any originally (apart from lower back pain with hindsight)! He also said that I wouldnt routinely be scanned unless I had symtoms and I wont get smears anymore just be checked via hospital...I guess they do know what they are doing and deal with ladies like us every day but I know I will be pretty paranoid about everything to begin with.  I wish you the best of luck with everything LouLou

xx

Smear Mar 2012 - mild changes Smear Sep 2012 - polyp & abnormal result Colposcopy,hysteroscopy, lletz Sep 2012 11 Oct 2012 - diagnosed adenosquamous carcinoma 11 Oct 2012 - staged at 2B - 5 wks chemo/rad, 3 brachy - ended 27/12...ALL CLEAR 9/4/13!!!!!

lucykillian
lucykillian's picture

Hi LouLou

I  was diagnosed with 'Adeno' 1b1 in Nov 12 and had my rad trach on 12/12/12. I am 24 so was refused a smear test 3 times!! but the consultant who performed my surgery (he is a superstar!) told me that the Adeno cells are harder to detect via a smear and so may not have been picked up anyway. I too bled between periods and my GP put my symptoms  down to hormonal changes/trapped wind/ thrush...so I took myself to a GUM clinic and the doctor whom I saw knew there was something wrong when I bled very heavily after my first examination and so asked me to come back in 10 days time as he suspected Pelvic Inflamm Disease but wanted to check that was definitely the case. I essentially owe that doc ALOT! he rang me while he was away on his holidays to say he was worried and that he wanted me to come in asap and after another 2 internal exams with him and his colleague he immediately referred me to a gynaecology clinic in the same hospital for that morning where the doc said to me he could see 'something growing' and they needed to rule out cancer...I was immediately drafted in for a CT scan and a colposcopy the following Monday and Tuesday which was when the doc told me that he was 95% sure the growth on my cervix was cancerous.

I met with my consultant and after an MRI and EUA my consultant and I agreed on a Rad Trach operation and I received my 'all clear' at the beginning of Jan. 

All I can say with regards to your worry is that albeit hard, I try to focus on the positives... Our doctors are experts in their field and our bodies were giving signs before diagnosis so there is no reason why your body wouldnt indicate something is wrong again if God forbid it were ever to return! The constant examinations/ scans and check ups we will receive mean that although we've had the unfortunate cancer diagnosis, we have more knowledge of what is going on in our bodies than we would have ever had and I truly believe knowledge is power!!

I've been told to wait 2 years for children as my cancer type was very aggressive so if it did come back it would be a bugger to treat (excuse my french!)

May I ask - how has your recovery been from rad trach?  

Lucy xxxx

LucyKiss

khall92

Hi

I was diagnosed with 1b adenocarcinoma last August.  It was detected in a smear but my smear only showed borderline changes.  I was extremely lucky because I was in the first batch of patients in my area to have HPV testing.  Because I had a HPV + result I was referred immediately for a colposcopy, if my smear had been a week or two earlier I would have just had another routine smear 6 months later.  I dread to think how much worse it would have been then.

I think adeno carcinomas are much harder to detect because they start higher up the canal and not on the surface of the cervix.  My consultant reassured me at colposcopy that everything looked fine but there were a couple of areas of new skin growth, nothing ominous.  However, she did take a couple of pinch biopsies just in case.  The biopsies just came back abnormal and not cancerous so I was subsequently booked in for Lletz to remove them.  My understanding is that the cancer was just growing through the surface of the cervix.  Once the consultant did the Lletz and went a bit deeper she could feel something wasn't right.  Until then because I only had borderline changes I had to wait ages for appointments and results, but after the Lletz my results were rushed through and I was subsequently diagnosed.

I feel incredibly lucky that my smear was done at the exact point that my cancer was coming through the surface of the cervix.  If my smear had been a bit earlier and not found it then I would have waited another 3 years by which point maybe it wouldn't have been so curable.  Smears have undoubtedly saved thousands of lives, but unfortunately cannot detect every case of cervical cancer :o(

Best wishes

Kirsty x

 

 

 

May 12 - borderline smear Jul 12 - colposcopy Aug 12 - lletz, diagnosed adenocarcinoma, MRI/CT, staged 1b Sep 12 - radical hysterectomy, ovary & lymph node removal Oct 12 - clear and in remission

andreac
andreac's picture

Hi,  I feel the same as Kirsty in that my Smear in March 2012 was actually due in Nov 2011.  If I had my smear in Nov 11, maybe the borderline changes wouldn't have showed up and I would also have gone 3 years till next smear...dont even want to think about that really.  Although I'm at stage 2b, I feel really lucky to have been given this chance and have grasped it with both hands!!

best wishes Andrea  x

Smear Mar 2012 - mild changes Smear Sep 2012 - polyp & abnormal result Colposcopy,hysteroscopy, lletz Sep 2012 11 Oct 2012 - diagnosed adenosquamous carcinoma 11 Oct 2012 - staged at 2B - 5 wks chemo/rad, 3 brachy - ended 27/12...ALL CLEAR 9/4/13!!!!!

Annabel

I agree with everything that's been said. The reason why the smear missed it is very likely to be because you had an adenocarcinoma.

In September 2011 I went to my GP because I'd had a severe bleed after sex, so she had a look, said I had an ectropian and took a smear which came back normal. Over the next 12 months I was constantly in and out of the GP surgery because I had suddenly gone from being someone who never even got a cold, to someone who got everything that was going and took ages to shake it off. I was exhausted all of the time and by Spring 2012 I was bleeding between periods. In the Summer I sat in my GP's office and said "Why am I ill all of the time? There must be a reason. I'm 38, I've never smoked, I eat healthily, I take loads of cardiovascular exercise. There must be a reason for this. I'm fed up of being ill all of the time!" It was put down to stress and I was told to get more sleep. I'll be honest: I gave up badgering them - it had been going on for nearly a year and I was tired of going to the doctor. It just so happened that I was due for my regular smear test in September 2012 (a year after I'd had the 'normal' one), so I mentioned to the nurse that I had been bleeding between periods. Because of this, she took extra swabs, and the results came back showing severe dyskariosis. Off I went for a colposcopy the following week and a few days after that was told I had adenocarcinoma and had to have a radical hysterectomy. The reason the smear I had a year before didn't pick it up was probably because it was very early days for my tumour, so it didn't detect it. 

The smear test is specifically designed to detect changes in squamous cells. There is a good reason for this - the vast majoirty of cervical cancer cases are squamous cell in origin. Typically, adenocarcinoma is much harder to detect with this method and tends to have been there for longer before it's picked up. This is not a great thing to know as I think that before we get cancer, we assume the smear will always 'work'. The smear test is a great thing and has been instrumental in bringing down the rates of cervical cancer but unfortunately, just like everything else, it's not perfect. I suspect the new 'brush' will start to pick up more cases at an earlier stage and they will be looking at it anyway because anecdotally, medical scientists are reporting a rise in the percentage rates of cc being adenocarcinoma.

If it returned, you'd get symptoms again and these would be jumped on by your MDT. Like the rest of us here, you are likely to now be extremely vigilent about your body and will flag up any changes as soon as they happen, and that's a very positive thing. 

Regular smear test 09/12. Came back severe dyskariosis. Colposcopy & biopsy 19/09/12.

Diagnosed with adenocarcinoma cc 03/10/12. Stage 1a2.

Radical hysterectomy booked for 15/10/12. Cancelled & re-booked for 18/10/12 - at hospital all day before getting kicked off the theatre list. Radical hysterectomy finally happened 01/11/12.

All-clear given 09/11/12. Confirmed at end of November. Put on regular check-ups.

 

pixi

Hi annabel reading your comment as scared me as i am like u back to and from docs and now fed up with going in ill all the time and this is not me i cant seem to shake it off as soon as one thing clears up iv got something else in always tired i don't no wat to do the docs kept saying its one thing then its somet else now iv stopped going but i know there something wrong and don't no wat to do iv had smears n they have come back ok i just feel like I'm getting ill more and fast i have three kids and I'm 27 any advice would be good and i don't have money to go private thanks

Toca

Hi my story is scarily the same as yours. I was having bleeding after intercourse but I was working a few jobs and it was on the lead up to my wedding. When I got back my honeymoon I had the letter saying my smear showed abnormal changes (16 months before clear smear!) I also went private and after my colposcopy was told by the consultant he could see pre-cancer but no cancer. Fast forward a few weeks and I was stage 1b1 adenocarcenoma. I had my treatment in sept 2011 and I am currently 32 weeks pregnant - yay!! I worry as when they were monitoring me (they don't during pregnancy!) they do a smear every three months then at my next check three months later they do an examination. As you have all said the smears don't appear to be accurate with adeno so would they not be better doing a colposcopy?! How have others been followed up?

Smear - April '11 Biopsy - June '11 Diagnosed CC stage 1B age 28 LLETZ - July 11 MRI - Aug 11 Surgery - Lymph node removal and Second LLETZ - Sept '11 No spread found, no lymph node involvement Clear smear - Feb 2012

Dwan6979

Hello everyone, I just found out one week ago that I have adenosquamous type cervical cancer. I am 33 years old with no children. Like many of you, my periods were irregular and I had bleeding after intercourse. I also had regular pap smear (at least every 2 years) which always had negative results. I still dont know what stage my cancer is, will be doing MRI and CT scan this Saturday. I am scared as I am working overseas away from my family and I work to support myself. I hope and pray that my cancer isnt far advanced. Please include me in all your prayers as you are all in mine. Thank you.

louloupop

Dwan6979 Just wanted to say I've just seen your message and am thinking about you!!

 

Ladies thank you all so much for replying, it is seriously such a comfort to hear from other people who understand how you feel :-) 

pixi

i would like some advise please.

 

i had the bleeding after inter course and in between periods and the abdominal pain i have a procedure done at my doctors where he burnt my cervix and the slowed the bleeding then it finally stopped i had this problem for a long time and i still l get the pain but my doctor thinks its nothin iv been worried as my doctor was the one who first thought that it was cancer i still dont feel right iv been ill more than i ever have with different things i feel weak all the time my skin is itchy my boobs hurt and itch and my stomach hurts and my vaginal area hurts when i have inter course i feel that there is somet thing wrong. Iv had a smear test n they say it was clear but still did the op thing i feel like they have missed something. It's only the 3rd moth of the year and iv had tonsilitus twice iv been bed bound due to severe head aches and nausea three times iv had cold twice and I'm never really ill I'm 27 and cancer runs in my family iv told the docs that my nan dies from cervical and breast cancer and my mum had cervical cancer but yet i still have to wait three years in between smears and they were happy to leave it at that when they did the op thing i don't no what ele to do iv been bk and fought to the docs for about a year till some got done and i don't feel the right thing got done in now aunti doctors and don't like going. iv looked up cancer n iv seen the facts that adenocarcinoma cancer is hard to detect and that its a form of gland cancer now in fearing the worst that it could be this and if so iv had these problems for almost three year as it all starts after i had my son three year ago in may iv said to my boyfriend i think iv got something wrong with me as in never ill please help thanks.

bogeywoman
bogeywoman's picture

Hello to all the ladies on this post.  

It seems that we are 'all in the same boat' so to speak, those of us who have had a cancer diagnosis,  having the same type of cervical cancer, adenocarcinoma.  Unluckily for us as we all now know, our smears haven't been successful at detecting this. That last statement really p****s me off when I think back over my experience as I always went religiously for my smears - never missed.  The smear that kicked this journey off for me, having had bleeding after intercourse - a classic sign of cc - only came back with 'mild changes'. It took a further 2 smears & 18 months for a smear to show abnormal cells.  Even on the abnormal smear, my doctor said '' this is not cancer, it's the stage before cancer''. HOW WRONG WAS HE!. To find out that the smear, performed as it  currently is - doesn't find these abnormal cells because they're located higher up the cervix -AND THAT DOCTORS, ONCOLOGISTS ETC ARE AWARE OF THIS - WHY THE  FECK AREN'T THEY DEVISING A METHOD THAT WILL  BE ABLE TO  GET AT THE CELLS FURTHER UP THE CERVIX???  or at least, when you've presented to the doctor for a smear - when it's not even due, because you are bleeding after intercourse - that even if a smear comes back with mild changes - you should be referred straight away for colposcopy.  This is the only way this type of cancer  will be detected.  

We all know our bodies and I too, like a lot of you ladies on this post, was 'unwell' for a long time leading up to diagnosis.  Nothing major, just a list of small things that kept re-curring or that just wouldn't go away.  My body speaking to me - telling me something was up. Weird things - persistant sore arm, persistent sore knee, persistant slight cough, shortness of breath, and finally shingles.   

Doctors need to listen more, to the person, not just go by a smear result. They know the smears  are not 100% accurate so if a patient continues to have 'other symptoms' such as bleeding etc, they should be investigated further at the earliest opportunity. Looking back - I wish I had pushed more too, but I never imagined I would have something as horrid as this - in my opinion I'd always had my smears & they were ok - right?

This is turning into a bit of a rant but I'm so disappointed in the whole smear test thing - who knew? not me, I thought they were a 'one stop shop' for early detection - WRONG.

June&Dec 2011'cell changes'June 2012abnormal cellsOct. 2012colposcopy confirmed CCNov. 2012EUA & MRI stage 1B1Dec.2012 rad.hyst. & ovaries removed, biopsy show spread to ovaries restaged 4. CryJan-July2013 6 chemo 25 radio. 2 Brachy Sep.2013 scan, all good Jan2014 scan, all good July2014 scan, all good

Sarah7777

God this is all frightening to read as my smear came back borderline changes and I too have been having pelvic pain back pain pain in leg and chest....no abnormal bleeding or anything but reading these comments I'm even more scared now especially having these symptoms 

Eliz52

The pap or smear test (same thing) was designed to detect/prevent squamous cell carcinoma of the cervix and usually/often misses other types of cc like adenocarcinoma or even rarer types, neuroendocrine cancers. The worrying thing: these women can get a false negative test result that can falsely reassure and lead to a delay in seeing a doctor for symptoms. (that can mean a later diagnosis/poorer prognosis) 

So women should act on persistent and unusual symptoms regardless of smear test results, ask for a proper investigation. 

Sadly, young women (under 30) are more likely to get false positive smears and that can lead to excess biopsy or over-treatment while the real (but thankfully rare) cancers can be missed, when this fairly rare cancer does occur before 30 it's usually an adenocarcinoma.

Some countries like The Netherlands and Finland choose not to screen those under 30, they've concluded screening is risk for no benefit in young women, they simply tell them to see a doctor with persistent and unusual symptoms. 

There IS something better for women aged 30 and older, HPV testing and HPV self-testing will save more lives and takes most women out of pap testing and harms way. See the Dutch program, 5 HPV tests or HPV self-testing at 30,35,40,50 and 60 and a 5 yearly pap test will only be offered to the roughly 5% who test HPV+..see HPV Today, Edition 24

I think women make better decisions with real and complete information, evidence-based testing is best. (that with informed consent)

All the best...

miss-positive

Hi everyone,

Okay so I went for my first smear a couple of weeks ago because of the usual cc symptoms (abnormal bleeding, pain, clots, fowl discharge)

I went to the doctor today because my pelvis is painful, my left side and leg plus I'm getting bad stomach cramps, clear discharge with a milk substance in and I've opened my bowels too many times in 4 days. She told me my urine sample had 'moderate growth' - whatever that means?!

She has referred me for a colonoscopy and ultrasound because of all my symptoms - but I've just had the results as normal!! No way is this normal! I have no infections so why is this normal!

I feel so worn out all the time too.

Anyone else in the same situation?

Hafsa101

Its 22/10/2016 time 2.33... i dont know what to say as I am so confused. I had spotting scince the 1st and on one occasion intense lower back pain.. i had a bleeding in and out for past 8-9 months be it after sex the bleeding or spotting would continue through out the week and my periods wer more heavy and longer lasting...with a mild back pain i also sweat alot at night having me to wake up and change my top.. i thought it was cause of my c-section so i went docs on 24/05/2016 who did an internal and smear everything looked ok. Still time going on it's getting worse i started getting heavy clots on 14/10/16 then heavy bleeding two days later leaving me hald paralized with the intense back pain n pain in my scar sharp pain at times...now im having episodes of faint breathing where it feels like im gasping for air the minute i close my eyes..i was so scared today for the first time letting my husband near me thinking if its good for me or him thinking if its going to be painful or i might bleed a lot...went to give bloods on 19/10/16 results came as low iron so am going with my mum to see docs on monday.. and as av read most posts regarding cervical cancer its making me more and more scared that I actually have it reason being is everything the women talk about i have the same symptoms...so i am going to go docs and ask them to do an emergency scan or biopsy to Clear my head... anyone understand or relate to what im going through its driving me mad???

Mgw

Wau girls, hope everything ha worked well. Thank you for sharing your experiences.

I always had my pap smears normal. I went back to the doctors a few times because I had bleeding after sex although all my tests showed no infections or abnormalities. Finally, my doctor suggested me to do a colposcopy, that biopsy showed I was in the CN3, so got in to a LLETZ procedure as soon as posible. Interestingly enough my pre-cancer was not due to HPV strains 16 and 18 that produce cervical cancer, my mum had it, so I think there is posibility that the propensity to have it can be inherited. Mybe this makes it more "undetectable" in pap tests, don't know.

Cheers

Jodie3654

I had the same problem I had 2 smear test done (25 years and 28 years old) they both come back normal,I was getting a few symptoms and was getting worried so got referred to a gynocology have test done and it turned out I had stage 1b cervical cancer. 

When I had got diagnosed with it they went back through my previous smear test and it turned out that bothe of the ones I had before had actually showed abnormalities on both.

1 1/2 years I got diagnosed with cervical cancer, i had my yearly smear test last week and think it may have come back again as getting a lot of the same symptoms again but worried that they will miss it again.   

Jodie x

Dougal180

My smears regressed from CIN3-CIN1 after I gave birth to my daughter. I started getting pain in my pelvis, long and heavy periods, bleeding inbetween and after intercourse. Intercourse has gradually become more and more painful, I have a constant cramp feeling in my lower abdomen. My GP sent me for my follow up smear and colposcopy early. The smear itself was beyond painful, just having my cervix touched with a cotton bud sent sharp pains right across my tummy. He said the biopsies look normal and he doesn't think it'll pick anything up this time. He is sending me for an ultrasound and laparoscopy/hysteroscopy...

Do you think it could also be adeno? Xx

  • 27/12/2013 Normal Smear
  • 09/01/2017 Abnormal smear - high grade dyskaryosis
  • 31/01/2017 - Colposcopy - confirmed CIN3. Unable to carry out biopsy due to early pregnancy.
  • 28 March 2017 - Colposcopy/biopsy 
  • April 2017, CIN3 confirmed.
  • August 2017, further biopsy confirming CIN3
  • september 2017, safe delivery
  • November 2017, Coloscopy showing possible regression of cells- inconclusive biopsies
  • January 2018, colposcopy and case review with Pathologist- CIN1, YAY! Follow up January 2019.
  • June 2018- Spotting & pelvic pain- Urgent referal to Colposcopy.

More Information

Cervical cancer