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Close Encounters…of the Cervical Kind

This post won’t be about SEO but it’s the one I’d like and appreciate people sharing more than any I’ve had on the blog before. To clarify what I want to achieve with this it’s to encourage women and men that have girlfriends, daughters, wives and female friends to go to their GP, get a smear done and be tested for cervical abnormalities.

To paint a bit of a picture about the background I turned 25 in June of this year, I’m a fitness freak, love running 26.2 miles every now and then, enjoy life to the full, smile pretty much all the time, (unless I’m out of chocolate), have a nutritious diet (irony noted) and have never smoked. I feel healthy in myself too and have no symptoms of anything untoward – yet I tested positive for cancer causing HPV.

The HPV virus caused abnormal cells to grow on my cervix which, by my twenty fifth year had spread through all three layers of the surface of my cervix and into my cervical canal. From this point, if left unchecked all the cells had left to do was get into the cervix itself and I would have had cancer, something which after speaking to my Doctor we estimated would have taken 1 maybe 2 years. So there I would have been; a healthy, full of vitality 26/27 year old girl…with invasive melanoma. The realization hit me hard and after suggestions and encouragement from the incredible friends and family who helped to get me through this and after reading that screening figures had fallen again in the years since Jade Goody, I decided that I wanted to make the issue prominent once more and encourage women everywhere to go and get tested.

Some people have said to me that I’m brave but I don’t buy it. I’m very lucky and it’s the least I should be doing to encourage other women to have the appropriate tests and treatment. I’m going to cover everything about my experience here to give as broad a picture as possible as to what’s involved for those who go through it, what are the facts, what are the stats and what to expect. So grab your popcorn or look at this if you don’t want to know the details!

The process

When you turn 25 you’ll get a letter through the post inviting you to go to your Doctor and have a smear test, yes it’s uncomfortable, yes it feels a little odd and unnatural but it’s by no means unbearable. It’s over in less than five minutes and your dignity is maintained at all times. If the thought of getting the test done puts you off, I can assure you it’s not that bad at all.

A few weeks later if the lab results show some level of abnormality you will get a phone call or letter through the post which can say a number of things although this may differ across GP surgeries.

The possible outcomes are:
- mild dyskaryosis (pronounced dis-kari-o-sis) meaning one third of the thickness of the skin covering the cervix has abnormal cells in it, these regularly return to normal by themselves and so you will most likely be asked to go for a repeat test in six months
- moderate dyskaryosis meaning abnormal cells can be found in two thirds of the thickness of the skin covering the cervix
- severe dyskaryosis meaning the abnormal cells can be found throughout all of the skin covering the cervix

My results came back with the diagnosis of severe dyskaryosis, and all you need to see is the bold header of the vomit-green A6 “Cancer Screening” pamphlet to become absolutely terrified at this point. My advice? If you can trust yourself to look briefly online you may well feel better by reading how common and easily treatable this condition is. Somehow though, given that my job revolves around knowing the internet inside out, after two hours scouring cyber space and reading hundreds of positive stories and finding just two bad ones I felt worse than ever. Try and leave the internet alone, call the Doctor, Nurse or NHS Direct (0845 4647) instead.

If you have moderate or severe dyskaryosis you will be given an appointment to go for a colposcopy. This is a scary sounding procedure that really isn’t so bad, the psychology of the process is far worse than the procedure itself. I’d recommend taking someone with you though – I went alone which was not my best day at the office!

Speaking from personal experience, when I went into the appointment the gynecologist put me at ease and asked a number of questions to learn about my history and current status such as if I smoked, my age etc. He then explained the process and drew a diagram to cater for my inability to understand medical terminology – all those years of “painting by numbers” finally paid off…

It’s important to note here that however unlikely it is, however much you plead and whatever format you put the question to him or her at this point the Doctor cannot tell you that you don’t have cancer, but please trust me, when the literature says it’s unlikely – they mean it. This procedure is a preventative screening process, catching the cells in their precancerous stage. It’s very unlikely even with severe dyskaryosis that you will already have cancer…which of course will do absolutely nothing at all to make you feel better at the time.

My advice at this point is to ask everything you want to ask however absurd – my gynecologist was presented with an iPhone note full of crazy “what ifs”. They won’t laugh, get annoyed or make you feel worse, they see this all the time and they will make you feel better. This is a fairly common and eminently treatable condition. The screening process is predominantly a preventative action and thanks to modern science and our national health service we can arrest this disease before it becomes too life threatening.

Emotive lecture over let us continue…

Depending on your age you will either get treated there and then ending the process and closing the chapter or in other cases such as mine, as I was so young and because of the risks involved with the treatment, the gynecologist was reluctant to treat me without being certain of how far the abnormal cells had spread. Instead they took a biopsy of the cells which were sent back to the lab for tests to establish the grade they were – more waiting.

The biopsy shows one of the following:
- CIN 1 (mild): may not need treatment
– CIN 2 (moderate): will need colposcopy and then depending on the biopsy result may need treatment
– CIN 3 (severe): will require colposcopy and likely need treatment. CIN 3 is sometimes also called CIS (carcinoma in situ) which sounds like cancer, but isn’t. It means that some of the cells look cancerous but they are all contained within the skin layer covering the cervix and removal of them will prevent cancer occurring.

These funny acronyms represent how far the f***ers, excuse me, abnormal cells have grown. From here, (please note I am speaking personally and have no medical experience) when the cells can be found on the glandular tissue in the cervical canal they are then called CGIN (Cervical Glandular Intra-epithelial Neoplasia). I then understand – this last stage did not happen to me so I cannot be certain, that after this stage they begin to enter the cervix itself which is when they are called cancer or invasive melanoma. I am not a doctor, so there may be inaccuracies in what I have just described however this is my understanding of the histology.

So, if as in my case, you don’t have treatment straight away your results come back and you need treatment here is what to expect:

If the cells are CIN2 or CIN3 you will have the procedure under local anaesthetic. If the cells are deeper than this i.e. CGIN you will go under general anaesthetic, however depending on the gynecologist and size of the affected area you may also get the option to go under local anaesthetic here too.

In my case, suspected CGIN and the abnormal cells going into my cervical canal, I had the option of going under general but decided to opt for local anaesthetic and would recommend this. I went into the surgery room at 17.55 and at 18.28 I was being driven home…ok I’m not one to feel sorry for myself so I pretty much hopped out of the horrendous looking chair with the stirrups (by the way there is NO way to do this gracefully), said I felt fine and marched myself out but still – even though I’m sure the recommended recovery time is longer I felt absolutely fine.

So, what happens?

You go in, ask more questions, the process is explained to you along with the risks and you sign your consent. The main risk of treatment is a 10% chance of giving birth prematurely – I’ll take those odds against cancer any day. I believe the reason for this is as you are having an area of your cervix removed, you are effectively weakening it. If you need the treatment again in future perhaps this figure may change.

You get undressed, get into the chair and kiss goodbye to being a lady for twenty minutes or so while the nurse chats to you about current events (in my case we’d just won a load of gold medals in the Olympics THANK GOD) to take your mind off what’s happening. Again I emphasize in my case dignity was maintained at all times and the staff at the hospital were incredible.

A speculum is inserted, and then an iodine dye which when spread over the area shows where the abnormal cells are, you are then asked to give a small cough which I believe is when you are given the local anaesthetic. Then the gynecologist gets their hot wire type contraption which lets out what isn’t the quietest noise in the world and burns those suckers out! They remove the cells, plus a space around them to ensure they have them all. Then voila, you’re done. It’s uncomfortable yes but it hardly hurts at all.

I’m not sure if this is true for all hospitals but if you don’t mind the gory stuff there was a monitor in my room where you could watch all the…er…action unfold. I surprised myself by finding I wanted to watch it, just to see them gone. I suspect people surprise themselves a lot in these situations; I felt like I’d had a parasite living inside me for weeks and I wanted to see for myself that the cells I so despised were out of my body.

Whoever you have with you will most likely not be allowed in the treatment room and you will be with the gynecologist and a nurse during the process. At the end of the procedure I was given a copy of the smear results and histology report to take home with me where I read the sweetest words I have ever seen over and over again “There is no evidence of invasive melanoma”.

So, what next?

This brings us up to date with my story. The cells that were taken out have been sent for testing to make sure they’ve all been removed after which the Doctor will call me to verify this, six months down the line I will then go for another colposcopy. If this comes back clear then happy days, mines a vodka lemonade – I can breathe again.

Conclusion

– This plays havoc with your mind, the psychology is far worse than the reality and your mind will make up horrible stories. Don’t let it falsely verify them by asking Google! As much as it pains me to say it there are some instances when Google doesn’t have the best answer.
– The worry isn’t over until it’s over. First you worry about the smear, then the colposcopy, then the results of the colposcopy, then even when you hear its not cancer you’re scared they got the results wrong and it is cancer, then you worry that the biopsy was wrong, then you worry they’re going to do the procedure and find out the cells have gone into the cervix after all, then you worry that they haven’t removed them all and they’re still there, then you worry that they’ll come back…There is no getting away from this annoying, seemingly indelible, part of human nature, so talk to the professionals, ask them questions, give this the appropriate energy then park it – it’s done. If you need to deal with it again in future you will.
Get tested – we’re all busy, we all have things to do, but we can all take preventable action against cervical cancer. Make a Doctor’s appointment and get a cervical smear test.
Perspective: nothing like a cancer scare to give you some of this! That kilo you gained on holiday? The toilet seat your boyfriend left up the other day? That bad day at work? Not so bad! Enjoy life and be grateful for your health, without it we wouldn’t be able to niggle at life’s imperfections nearly so much as we do.

The Facts and Statistics (also available here)

HPV:
1. HPV is very common; we’re all likely to have it at some point in our lives and our immune system usually fights it off on its own. You can have it if you have had 1 or 100 sexual partners and it’s when your immune system can’t fight the virus off naturally that the cervical abnormalities develop
2. We develop immunity to the HPV virus with age which is why its more common in younger people
3. There are many strains of HPV, only if you test positive for the high risk cancer causing ones (strains 16 or 18) will you require treatment
4. Working on your immunity can help your body to fight off HPV naturally. A fully functioning immune system can fight the virus which causes the abnormalities more effectively than a partially functioning one
5. The HPV vaccine given to teenagers isn’t 100% guaranteed to prevent cervical cancer and your suitability for it is dependent on being sexually active and other factors. If you’re passed the age where they give it currently or are an adult you won’t be suitable for it now.

Screening:
1. Screening is a preventative measure, it very rarely means you already have cancer, it’s designed to prevent you getting it
2. Treatment is around 95% effective
3. About 1 in 20 tests shows some level of abnormality
4. About 3-4 in every 100 tests show borderline changes
5. About 2 in every 100 tests show mild abnormalities (related to CIN1)
6. About 6-7 in every 1,000 tests show moderate or severe abnormalities (related to CIN2 and CIN3)
7. Less than 1 test in 1,000 has invasive or glandular neoplasia (related to CGIN), one of the more serious abnormalities. This suggests cervical cancer might be present but this is not proven until a biopsy has been taken at colposcopy.
8. Less than 1 in 1000 tests show invasive cancer
9. For women between 25 and 49, 3 yearly screening prevents 84 cervical cancers out of every 100 that would develop without screening
10. Almost half of the new cases of cervical cancer in the UK occur in women who have never had a smear test
11. Smoking increases your risk of developing these cells

Jade Goody:
1. Here is a link to her timeline if you’d like to recap. Her tragedy did an incredible job raising awareness however after an initial surge screening figures have now dropped again as per this article by the Daily Mail.
2. This is a great video – made only better by the mustache…some great points addressed and Jade Goody mentioned.

Points to remember:
1. When you go for your colposcopy try not to book an appointment for when you are on your period, its ok if its very light but going when its heavy is risky – always call up and check
2. You will feel incontinent for a few weeks after, like old age come early. My understanding is as the cervix heals (bucket at the ready) it secretes a clear discharge. It’s normal though and not dissimilar to having a clear period – just wear a sanitary towel
3. No heavy exercise for 4 weeks after treatment
4. No tampons for 4 weeks after treatment
5. I’ve read no flying for six weeks after treatment but I cannot verify this
6. No sex for 4 weeks after treatment
7. I had slight stomach ache for a few days after and I believe this is normal
8. If you have treatment you will have a smear in six months time and if this is clear, once a year for a number of years
9. By going for regular smears you will stay on top of it if the cells return and you will catch them in time

Notes:
* All stats are from sources I have read and respected but I cannot personally verify their validity.
* I am speaking from personal experience; others may have had different experiences to this. I am only going on the professionals and establishments I had treating me.

3 Comments
  1. Oh Charlotte!! This is a very bad news I heard today. God can’t be so cruel. Feeling very sad for you :( Don’t know what is HPV & all that thing but my prayers & wishes are with you.

    Get Well Soon!! Waiting for your SEO tweets :)

  2. Excellent article Charlotte! Informative and well-written.
    It must have been a very anxious time for you, but brilliant news it’s all sorted now. And it is so rest easy now. You were very lucky it was caught before it could develop. Regular smears will keep anything at bay. Continue as before – being healthy and enjoying life! x

    • Thanks so much for the kind words :) Definitely! all looking good now, 20% of women skip testing so wanted to do my bit! Hope you had a great weekend :) xx

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