Petrified right now....

Cervical cancer

For people affected by cancer of the cervix to get together, ask questions, share experiences and support each other

Petrified right now....

No. of entries: 21 | Posted on 27 Jan 2013 09:45

Petrified right now....

  • I feel like I probably don't have the right to post here yet or maybe I will do soon, but il start with what has happened so far..........just before christmas I had my first ever smear (I'm 31 but i was pregnant every time I was due a smear in the past and that is the only reason for not going when i was called) anyway I rang and booked my appointment, had my smear and 5 days got a letter saying my smear showed severe dyskaryosis and I was being sent for a colposcopy, I had my colposcopy on the 16th jan and also the loop as she said it looks like what my smear result said and she could treat me now instead of coming back again, so i had it done and she also took two biopsys, the nurse who did the procedure was really nice and I felt at ease throughout. At the end of it all she said the biopsy is sent to confirm they have burnt away the cells picked up on my smear test and I would get a letter to confirm this within 6 weeks and an appointment for a follow up smear in 6 months time, well 8 days after my treatment a hospital receptionist rang me to say a consultant has asked me to come in on Tuesday to discuss my results, my heart sank straight away and I was shaking for ages after, I asked her if that means they have found something bad and she said I'm just a receptionist i don't know any details, which I expected to be honest, anyway she said she would send me a letter to confirm my appointment. I got the letter yesterday and this is what it says.... Dear Rebecca, I am writing to let you know the result of the cervical loop treatment that you had in colposcopy clinic on 16th January. The result has confirmed the presence of an early stage abnormality of the cervix. To discuss the result in full detail and to give you further information regarding further investigations and treatment, I enclose an appointment in gynaecology clinic with the appropriate specialist. That has made me panic even more, has anyone had this letter or similar? I'm just assuming this means early stage cancer, I'm so worried, Tuesday can't come round quick enough. Sorry for rambling :) Rebecca x
  • Hi Rebecca

    The not knowing and the waiting is DREADFUL. There are many people on here who understand the agony of waiting. I'll be honest, your story is very similar to mine and yes it does sound like they've caught something. BUT be reassured, if it was terrible news they would have asked you to come in straight away. It sounds like a VERY EARLY cancer which can be treated and they'll treat you quickly. 

    Try and fill your time before Tuesday as much as you can so you don't go loopy with the wait and the chattering in your head. Make sure someone goes in with you and try to write down some pre-prepared questions so you can get some answers.

    Good luck honey

    Sarah x

  • Thanks for replying to me, your the first person to be honest with me, everybody else says oh it's nothing it will be fine, or they are calling you back because they forgot to do something at the colposcopy etc. I agree the only reassuring thing is the word early on the letter, my hubby has booked the day off work to come with me, so not long to wait now. X
  • Hi Rebecca My god reading your story is like, listening to my own all over again, I have now had two cone biopsy's but it seems like yours is at an early stage and they may do a cone biopsy but I was also petrified my world came crashing down but after the first cone I got 95% all clear which is why I've had to have the second cone, I am now waiting for more results and I know how hard the waiting is, you never know til you get there, I think everyone automatically thinks the worst and I think it's our bodies own way of preparing mentally for what may come, try and keep busy till Tuesday I know it's hard but I just through myself into my family and work and didn't stop until the day! I think that was my way of dealing with things and everyone's different, Either way of your outcome, comeback and let us know how you got on, I wish you well and this forum is great for support and advice! X Gemma X
  • Hi Rebecca, sounds a lot like my story too. I had stage 1b1 which meant it was early and there were options open to me. I've had a trachelectomy, which had removed my cervix, but left me with my uterus meaning I can still try and have a baby. I fact, I'm I otherwise perfect health now! Keep yourself as busy as possible. It does sound like they have caught it early, which is good. Nothing I can do will make Tuesday better, but try to write down as many questions as possible. Stay strong. X
  • Thanks Gemma, everybody on here seems so nice, I don't have any close family at all and I'm a stay at home mum so I'm pretty lonely (omg how sad does that sound?!) I will let you know what happens Tuesday morning. X
  • Thanks cervy1b1, It's nice to know I'm not alone and I appreciate you sharing your experience of this with me x
  • Rebecca, it is so scary what you are going through and I know it all too well..I am a stage IIB cancer survivor of almost 20 years now. I had a hysterectomy and radiation..20 yrs have gone by ( so fast ) and let me tell you, it can be done and especially at an early stage sweetie! You are NOT rambling and you have every right to post here! You are a woman, and are HUMAN and are scared!

  • Hi Rebecca, reading your post reminded me of how I felt back in October when I was going through this! To cut a long story short, I was rushed throught the system following a smear in September and had lletz and a polyp removed from cervix and was told to expect follow up appt in 4 weeks. After 2 I haqd a letter bringing the appt forward to that week and when I called they could tell me nothing, but I knew. the day I was told I had cancer was the worst day of my life but everything then happened really quickly, I found a focus and as someone has said, you find a strength and determination to fight which you never realised you had!
    I am now 1 month post treatment (chemo/rad) and also have an appt tomorrow (my first checkup) so I am feeling anxious too - its perfectly normal to fear the unknown! Will be thinking of you in your appt tomorrow but be assured that whatever the outcome, there is always someone here to talk to. Also hold on to the fact that they have said "early" to keep you sane! Do let us know how you get on won't you and stay positive as you will come through this Rebecca. We all feel alone to a certain extent as you cant expect family and friends who have not had this experience to fully understand and its hard on them too for that reason as they want to say the right think but sometimes you do just want hnonesty. You will feel so much better once you know what you are facing and have had time to digest all the info they give you (there will be quite a lot!). Take a paper and pen and write stuff down if need be. Always good to have someone with you as a second pair of ears. My husband absorbed a lot more than I did on the day we were told so he was able to talk it through and clarify anything I had jumbled in my head. Good advice you have also been given is to take a list of questions. Be prepared for difficult news but equally know that it may not be that bad. will be thinking of you best wishes Andrea

  • hi Rebecca, Your story is also very similar to mine.you sound very much like the way I felt! This time last year I had my smear 31st january. I also had mild dyskaryosis and had treatment, Lletz and biopsy in march. They called me back with a similar letter , sadly diagnosed with early stage cancer, i was transferred to the oncology unit at Maidstone hosp who i may say have been brilliant .  I have  thankfully not needed any chemo or radiotherapy. As it was a small early cancer I had options, i agreed to a total hysterectomy, took the ovaries too, so early menopause  but Ive had my kids so better safe then sorry. They have told me they got all the cancer when they did the lletz in march! but the hyterectomy was more a precaution as I was also having v heavy periods since a year too.I Have two early teens girls, I never told them about the cancer bit. They didnt need to know any more than I needed an op for heavy periods and thats worked out just fine. but like you I have no family near and my friends don't really quite get it, so use this site as much as you like to talk and ask quetions and to share. try keep yourself busy and focus on your family. I'll be thinking of you tomorrow, I have my fourth mri thursday , fingers crossed. its the waiting for results which drives you insane....xxfrom one crazy one to anotherxxx Take care xxx

     

     

  • Wow I'm so overwhelmed by all the lovely replies and support. It's been on my mind all day and I do t think il sleep well. A few questions if nobody minds.... If you got you period within a week of having the loop was it more painful than usual? I got mine today and had lots of pain in lower back and low in pelvis, like labour pains is the only way to describe it. Also they won't need to do an internal tomorow will they? Sorry if its a stupid question I don't quite know what to expect to be honest. Thanks for all the support so far ladies xx
  • Hi Rebecca,

    I would be prepared for an internal tomorrow but under the circumstances they may not - I'm not really sure...With regards to the period, my first one was definitely heavier, longer and more painful and I think thats normal as your "bits" have been aggravated etc.  Try not to worry and sleep well tonight.  Let us now how you get on, ok?

    best wishes

    Andrea

    x

  • Hi Rebecca,

    I have been reading this the last few days, but only now got the chance to respond - sorry! This is a really scary time, and in truth there will probably be some scary information tomorrow, but try not to get yourself too worked up, and remember everything is very early and treatable.

    If you had the loop done at your last visit I wouldn't think they would want to do an internal exam. When we went back after the loop the doctor just talked to us, and explained the next steps. Ours was a scheduled follow-up, and we had been told that they expected to say 'all's well', so the cancer diagnosis came as a complete shock. 

    As a little tip - I highly recommend you bring a notebook with you, not a scrappy bit of paper, but a notebook so you can write down what you are told. There may be lots of minor details, but actually I also find it helpful to give yourself a little moment of break to take things in. I like to listen, write things down, clarify spelling etc, and then I always have a moment looking at it - and say 'ok, great, what's next'. It also makes the consultant slow down slightly rather than rush through things. 

    If it is cancer (and try to be ready for the word) the next steps will be tests tests tests. You probably won't get a clear answer, and the doctor will take into account if you want to preserve fertility, or preserve ovaries (to prevent menopause) and if your family is complete. But try not to panic, the whole point of the smear is to find these things really early, so it has achieved what it was meant to. It's a good thing! The alternative is finding out much later. 

    The other option could be another cone biopsy (Loop) if they feel they just need to take a little more. When I had my cone biopsy they actually did it under a general as they wanted to look further into the womb to ensure the cells hadn't spread (they hadn't) under a procedure called a hysteroscopy. I freaked out when they said it was a general, but it was easy enough.

    Some questions you may want to ask if they say they are doing more tests or treatment. 

    • What tests or treatment are you going to do?
    • What are you looking for?
    • I might be pregnant. Can you still do the tests I need?
    • Will the tests cause any problems with pregnancy in the future?
    • What happens if I don't have the tests?
    • Will the tests show whether I have cancer?
    • Can I have all the tests as an outpatient?
    • Are any of the tests painful?
    • Who will give me the test results?
    • How long will the results take?
    • When should I contact you if I don't get the results?
    • Is there a clinical nurse specialist (CNS) I can talk to?
    • Can I get a second opinion?

    (taken from here)

    http://www.cancerresearchuk.org/cancer-help/type/cervical-cancer/

    And my blog - although I am not a doctor, so bear in mind that it may not all be medically correct! Just my interpretations. 

    http://community.macmillan.org.uk/blogs/b/kaths_cervical_cancer_blog/default.aspx

    Best of luck. Remember it can seem here that bad news is normal, but the lovely ladies are all here because we have ended up on the wrong side of the stats, so we are not representative of the general population. 

    Let us know how it goes, and will be thinking of you. 

    Kath

  • Hi Rebecca,

    I had a loop excision mid-September and was diagnosed with cervical cancer at the beginning of October. I had a lot of very bad pain immediately after my loop - I had a period at the time - all like you describe. In my opinion, the medical profession underestimate the effect a loop can have on you - it's a surgical procedure to an extremely sensitive area of your body, so it's not surprising you'd feel yucky for a while afterwards. 

    I'm not going to tell you not to worry - not because I think you've got cancer, because only the people who have your results know that, but because you're bound to be worried, anyone would be - but what I can do is tell you my story, which in the situation you're in now, might help you a bit. 

    As I said, I was diagnosed at the beginning of October, with cervical cancer. I had an adenocarcinoma, which is not very common (most cervical cancer is squamous, which basically means the mutations have occurred in skin cells, rather than glandular cells), which cannot be 'staged' with scans. I had a radical hysterectomy on 1st November, which my consultant and surgeon both said was to 'protect your future' (I am in my 30s). My cancer was Stage 1a2. I have now had the all-clear and put on check-ups every few months. You've been offered such good advice on here already, that I think it would be pointless for me to repeat that, but I just wanted to show you that even if you do get diagnosed with cervical cancer, there is every reason to be hopeful. That doesn't mean it isn't hard - I'm not going to lie to you, it's shit - but I'm still here, and there's no reason to think you wouldn't be either. I am friends with someone who had cervical cancer and had a radical hysterectomy as well - eight years ago - she's just got back from a kayaking holiday! 

    Whatever your result, please do come back and tell us, if you feel able to. 

    Sending lots of positive thoughts and good wishes your way, Rebecca, and I'll be thinking of you tomorrow. x

  • Kath makes an excellent point, we are all here as we are on the wrong side of the stats.  There are thousands of women who have one quick treatment and are done with this.

    Thinking of you today.

    Katherine