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Why do I need further smears?

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CuriousCathy
Why do I need further smears?

I am confused by the changes in smear tests from looking for abnormal cells, to looking for the virus (and only if this is positive, looking for anbornal cells). I've always religeously had my smear tests even though it's not easy having had three repairs first an awful tear when giving birth to my first child. I'm 42, married (together for 23 years) with 3 kids. I've never had an abnormal smear, although my mum has (she had them lasered off and never had a problems since).

So my questions are:

1) Now I have tested negative for HPV in my last smear, and I'm in a monogamous relationship, do I need to keep having a smear?

2)Also, is it possible to request that my smear tests for abnormal cervical cells even if I'm HPV negative? My understanding (which may be wrong?) is that, although HPV is responsible for most cervical cancers, it is not the only cause of it. Hence my desire to know if there are any cellular changes, even in the absence of HPV.

 

Any info or advice most welcome! 

Jazza
Jazza's picture

Hi

To answer question 1:  YES you do need to keep having smears (see my back story).  A negative HPV test does not always mean one is not infected as  the virus can lie dormant and undetected  in the body for many years (possibly decades in my case).  However, dormant virus can reactivate at any time and then has the potential to cause cervical cell abnormalities.  The only people who can be sure they are not infected with HPV are those who have absolutely never had any sexual contact - including just skin on skin genital contact or using a condom.

For question 2; you can always ask but I suspect an NHS lab would be unlikely to agree to test your cells if you are HPV negative because of protocol.  I'm not sure but I would guess exceptions may be made for patients with certain health conditions.  An option for getting your cells checked would be to go private.

I can empathise that having smears done can be very difficult for some women - indeed I was one of them but one thing I know is that cancer treatment is a load lot worse than even a thousand smears.  Women who struggle with smear tests may be referred to a the colposcopy clinic where the test can be facilitated with the extra equipment they have.  Menopause can also mean smear tests are more difficult for some - in which case topical oestrogen cream can be prescribed. 

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: PMB
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 (1B2 on new FIGO) squamous cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A1 (2A1 on new FIGO)
  • Apr/May 17: 6 chemo, 25 external radio, 2 brachy
  • May 20:  NED.  Side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
CuriousCathy

Thank you so much for the reply. Sorry to hear you've had such a difficult past. The information about the virus being dormant is something I did not know, and explains why I'd need to keep having tests as I've always had. So many thanks for taking the time to explain this.

 

I think me having the virus is extremely unlikely...I've only had two sexual partners and both were virgins when we met (aged 16 and 18 respectively....I was the same age at the time!)....so I will also consider having my cervical cells tested privately given it's more likely another cause (other than the virus) that might lead to cervical changes for me. My mum has had abnormal cells in her past which were lasered off. My dad died of cancer (obviously totally unconnected!!!!) that makes me a little more paranoid about cancer. If there are screening tests to help catch cancer earlier I'm definitely up for that! 

 

Anyway, many thanks again. Wishing you better health this year. Take care x

55

Hello Curious Cathy

I also wondered why I needed to keep on attending appointments given that I have been celibate for a long time and yet here I find myself!!! I did go for my screening because my reasoning was PHE would not invite women (and invest money in the screening programme) if they did not feel it was necessary. Turns out it was a good job I did go as the treatment I have had could well have saved my life. It concerns me that many women in their 50s (my age) are not attending their screening because they think they are safe or because they find it painful. I had not realised that the screening programme had switched to HPV first testing and so had a steep learning curve about HPV to contend with too as well as dealing with stigma - 80% of the adult population (men and women) have HPV and even virgins can have it if they have even just had skin to skin contact. Cervical cancer is often perceived as a young person's cancer but there is a second peak in women between the ages if 55 and 60. Jo's trust is trialling self testing kits to enable more women to be screened - amongst them post menopausal women and those who feel shame at attending screening or find it painful. A recent article in the BMJ flagged up the possibility of offering a one off self sampling for HPV to all those women over 65 who have not had the chance to be tested for HPV in the hope that more lives can be saved. There are women in their mid 80s who die from this disease. In Australia the upper age for screening is now 74 and in Denmark all women born before 1948 have been offered a test for HPV. Sorry for the rant but I hope that this information will help more women to encourage others to get screened. A lot of the stigma surrounding HPV comes from myth and a lack of reliable information. Jo's can provide you with more information about HPV - their helpline and website are very informative. 

I hope this is useful

A x

Abnormal smear hpv & severe high grade dyskaryosis lletz Sept 2019 polyp & nabothian cyst. Results hpv & mild cell changes polyp innocent Repeat colposcopy Dec 2019 test of cure January 2020 no high risk HPV present , colposcopy June because of discrepancy between initial smear & lletz- June 2020 colposcopy  all clear; next smear in 3 yrs August 2020 post menopausal bleed; TV scan; bleed hrt related & found small ovarian cyst said will check in 4 months; Letter from hospital saying no longer needed 4 month check as cyst under 2cm & contact them if I develop pain (if cyst bursts?)

CuriousCathy

Not a rant at all! The more info the better, so we can make informed choices about our bodies and our health. Many thanks for taking the time to provide me (and others) with this crucial information. Take care and warmest wishes x