What were your waiting times?

Cervical screening (smear test)
61

Dear Lemon Lavender,

I just wanted to wish you luck this week with your second lletz. I've been pretty anxious waiting for my second lletz results so I've been avoiding the forum. I spoke to my nurse today and she checked the results for me. She told me she's not really meant to share the results with me before they go to the MDT but as I was so anxious she let me know that the sample was completely negative- no cin and no malignancy! I thought I would let you know as hopefully yours will be either clear or clear margins too. And hopefully your nurse will be equally helpful as I know how torturous it is waiting for results so I hope yours come through quickly.

Lots of love,

Xx

62

Oh Dreamland, this is such wonderful news! I'm so, so pleased for you. Like you, I have avoided the forum for a few days, so I'm so pleased to come back to this news. Xxx

63

Update week 11:

 

Not really sure if u should be using week numbers since my first LLETZ now?

 

I've avoided the forum since my diagnosis really. I can't quite get a hold of understanding my emotions at the moment.

 

Sometimes my mind spirals into catastrophising the future and I know it's unhelpful. I know it's unlikely, but it's hard not to go there. And I feel like no one else understands these fears.

 

Once you have cancer once, how likely is it to return? If they remove my cervix or uterus or everything, will it just come back in my vaginal wall in the future?

 

If I have to have a hysterectomy will that be a huge relief because they've taken it all away? Would they find more cancer if they did that they don't know about yet?

 

How would having a hysterectomy effect my sex life?

 

Do I want a hysterectomy or not?

 

Should I contact the doctors about going on some anxiety relieving meds for the next few weeks? Would they help?

 

Can I not just curl up into a ball and not wake up until its all over?

 

There's been no mention of an MRI but I did have a full spine MRI in December so I'm not sure if they can just look at that? I don't really know how they work.

 

I feel like I shouldn't call my macmillan nurse as she'll be supporting people with much more difficult diagnoses than mine.

 

Due to more annual leave (does anyone else have a team who are constantly on leave right now?), my op has been moved to next Monday 26th April.

 

Had a, telephone chat with my mum yesterday about my daughters birthday and at the end, almost like she had just completely forgotten she said: oh yes and how are you feeling after your cancer scare?

 

And it felt a little like a punch in the heart. Like it shouldn't be this significant of a thing to me if it's just 'a scare'.

 

Trying to lift my mood by sitting out in the glorious sunshine we have had the last few days.

 

Sending you all so much love and hugs. I would like a real hug right now xxx

64

Sending you love and hugs Lemon Lavender. I totally get you!

Xxxxxx

65

I feel like I've been pretty much okay, despite my concerns and worries. I haven't cried, I haven't panicked.

 

But today I got a pack from Macmillan in the post about having a holistic assessment and at first I was still okay.

 

But then I sat down, read through the booklet, went online and took a look at the assessment and I suddenly felt very panicky and tearful.

 

I don't know what to put on the assessment. I'm currently undergoing tests for other things at the moment and I'm sat looking at this asstjinking, well do I click that because I am experiencing it, even though I don't think it has anything to do with my cancer diagnosis?

 

And what if I don't click it and this gets sent to my GP (which it says it will be) and then my GP thinks I'm not experiencing those symptoms anymore.

 

But what if I do click it and my consultant sees it and thinks what on earth is going on with this woman! Why is she getting all those unrelated symptoms and why is she telling me about it?

 

And for each thing it only asks you how concerned you are out of 10. So there's nowhere for you to add anything additional. It's a very odd tool. Beforehand I felt pleased that I might be able to have somewhere to share my anxieties but it doesn't seem to be that. 

 

I really feel like a good cry would be helpful right now but I'm too busy with appointments so just felt like popping it all out here might help me get on with the rest of my day. X

66

Hi Lemon Lavender. I've been avoiding the forum for a while but have logged in and read the latest on your journey. They definitely should offer counselling. So many emotions. I would call your MM nurse to check in if you want to talk about anything. That's what they are there for.  Very good that the pathologists were thorough and that you finally have some more news, even though it wasn't what you wanted to hear. Just wanted to send you big hugs. Stay strong. You've got this! ?? xxx

67

Dear Lemon Lavender,

I just wanted to wish you good luck for next week with your second lletz.

Lots of love,

Xx

68

Update week 12 since first LLETZ:

 

Second LLETZ tomorrow.

 

Missed our last chance of having sex for 6 weeks because I have been really upset and just wasn't in the mood. My fiancé was as lovely and supportive as ever.

 

I worry that there's still cancer there and it's hard not to think of it, even when you're 'in the moment'.

 

I had to bring a large work project forward to last week because of tomorrow's op and I don't think I appreciated how much it was keeping me going. It finished on Friday night and I've been quite upset and tearful ever since.

 

I'm getting loads of gifts and cards from people which is lovely but feels weird. And I'm reading a book by Emma Davies called Take my Hair (but not my humour). I've found it pretty emotive, but also quite helpful. Sge uses humour as a coping mechanism and it has inspired me to try and be a bit more positive.

 

I've just reread my own experience as I've already forgotten what my recovery after my first LLETZ was like (disappointed to read I was still having pain after a week, fingers crossed its better this time round).

 

I've written some questions down to ask my consultant but I'm so on the verge of crying that I'm not sure I'll be able to speak without floods of tears. And I know crying will only tense up my body which will make it more painful, so I'd rather not cry beforehand.

 

We'll see.

 

Questions I've just written:

Can I have pictures of my cervix? 

Will you be using the iodine and vinegar liquid again this time?

Can you see when my last smear was? Will it be checked again?

Why has cancer grown within three years when everywhere says 10-20 years?

Exactly how much of my cervix has already been removed?

How much of my cervix are you planning on removing today?

I got an infection last time, cdoes that mean I'm more likely to get one this time?

Will we book my results appointment today?

Can I see my macmillan nurse today?

 

Just typing that final question out makes me cry. I am syluch a positive, strong person usually so my reaction to all of this has really taken me by surprise.

 

Sending you all love. Thank you for all your posts, I know I'm not on a lot at all right now. It's mainly because the forum is making me feel worse at the moment as I start searching for similar circumstances and finding results that aren't great. I'm so grateful to those of you that have posted with good news, it is so, so valuable and to all of you offering support and love. Sorry I'm not really giving it back right now. xxx

69

Dear lemon lavender,

Just wishing you well for today. I hope you're recovery goes smoothly.

When I had my second lletz I actually felt really good after the procedure as it gave me confidence that all the abnormality had been removed. However, I found the waiting for results really tough and gradually got more and more anxious as the days went on. So, I'm really hoping your results come in quickly, or more quickly than last time anyway.

I'm trying to stay away from the forum as I'm finding it's better for my mental health to try not to think about it so much. But I will keep checking to see how your getting on.

Lots of love,

Xx

70

Update second LLETZ - exactly 3 months to the day of my first LLETZ. 

 

Feeling pretty sorry for myself after my second  LLETZ today. My cervix still feels numbed by my womb is dragging like there's no tomorrow and I'm constantly thinking I might need a ?, but then have struggled to get up and move for nothing! Consultant said to completely rest for next few days. 

 

I took in all my questions again. Consultant was so lovely and funny. I'm so pleased to have him as my consultant! He's great!

 

The original plan was to take 10mm but after the iodine and observation he decided to go for 20mm by 18mm.

 

He said my womb looks very inflamed so I've been given antibiotics for 5 days metronidazole. And then he decided he was also going to go as far up the cervical canal as he could and take some biopsies too. Which for me is really reassuring.

 

Unfortunately I found a lump in my breast lastnight so I was pretty freaked out. He reassured me that in 30 years of working he has never come across a case of cervical cancer spreading to breast or vice versa.

 

They used a medium speculum this time which was perfect for what they needed and for my vagina. The pain was definitely worse in my vaginal walls after the last one, due to the large speculum being the only one available. 

 

I kept on bleeding everytime he was trying to cauterise it so he rang his secretary up and asked her to keep an eye on me for bleeding. I'm not sure how she will do that?

 

I spoke to my macmillan nurse afterwards. Floods of snotty tears whilst wearing a mask and feeling your about to inhale the mask is not a great experience, but she was just perfect. I said I had been just fine until this Friday and all of a sudden, my work finished and I can't stop crying. She explained that often happens when the diagnosis hits you.

 

I explained I was reluctant to phone her as right now I'm staged at 1a1 and I feel she has more important work supporting people at later stages. She said she'd had someone say a very similar thing to her just this morning and cancer is cancer. She explained that I'm also still at the waiting for full results stage (another 4-6 weeks due to my cancer being difficult to diagnose and needing a specialist to look at it after their own pathologist lab look) and that the waiting is an anxiety inducing experience for everyone.

 

We discussed counselling and medication. I'm seeing my GP tomorrow for my breast examination, so going to discuss medication for the anxiety I'm experiencing.

 

The procedure was different to last time but only in that they had a new machine that whilst using the LLETZ had suction too! Everything else was pretty much the same, and because I knew how valuable relaxing was to stop any pain, the only pain I felt was when he removed the speculum at the end because I think it had got a bit dry and stuck (like last time it wasn't the first speculum they had used and the first one came out just fine). I didn't even feel any pain from the local anaesthetic, which this time was 6/7 times (the last one, he noticed was leaking as he was inserting it, so asked the nurse for another).

 

Macmillan nurse has marked me down for a call when she knows I'm being discussed at MDT, and then she'll call me straight after the mdt and let me know what was said too.

 

I feel in a much better place mentally thanks to the consultant, the lovely nurse and the macmillan nurse. We are so lucky to have our NHS and charities like Jo's and Macmillan.

 

I'm staying away from the forum for a few days as it's not been good for my mental health at the minute, but I know some of you were waiting for updates.

 

You are all in my thoughts, especially Rebecca and Dreamland. I hope you're both doing okay and I'm sending love to all of you who are in this rubbish waiting for results situation and beyond xxx 

71

Lovely to hear from you lemon lavender.

I'm glad to hear your procedure went smoothly today and your consultant has put your mind at rest a little. It really makes a difference the approach of the professionals, doesn't it? After seeing one of my doctors, I had to take 2 days off work because I felt terrible about it all. Then, after my second lletz, the doctor made me feel so confident about it I felt brilliant afterwards! Anyway, I'm glad to hear you're in a better place mentally.

Sorry to hear you found a lump in your breast, that must be worrying. However I'm glad to hear your getting everything checked out and I'm sure you'll be well looked after. I hope you're not letting your mind run away with you. Through this process I have had all sort of thoughts about other cancers I might have! It's easy to develop health anxiety particular with the worry of waiting for results.

Anyway, like you I'm trying to stay away from the forum as it's been good for me to try to forget about it all as much as possible. But I will keep checking on your progress. I'm thinking of you and Rebecca1965 and the other women here going through this and looking forward to the days when this is all a distant memory and we've all got our health back on track!

Lots of love, xx

72

Hey Lemon lavender,

Thinking of you today. Hope your doctor's appointment went well.

Xx

73

Hi lemon!

I've spent the last hour or so reading your posts and then got here from your signature and I just want to say thank you for sharing your experience. 

I feel very silly for even sharing what is my experience so far, but I am just feeling very alone and maybe that I've come across this site tonight for a reason. I have had three smears in total, first was normal, last one hpv positive and borderline changes, and so I had a colposcopy. I was pretty oblivious at the time to it all and didn't pay much attention at my appointment and was told see you in three years. I was due in January 2021, which I knew because I previously went to the doctors for recurrent bv, irregular bleeding and bleeding after sex and pain during sex. Wouldn't do a smear in January 2020 as it was only 2 years after my last. Sent me for a pelvis and internal scan and I went for bloods too, what for, I'm not really sure but all fine, so I've just kind of done nothing else much about it. 

Heard nothing about my next smear, left it til feb with Covid and that, still heard nothing and so contacted them. Was told nope not due, but I insisted, so was told a nurse would call me back. A nurse did, confirmed I was right and I got an appointment 11th March, I think it was about 3 and 1/2 weeks away. I arrived at my appointment and the nurse asked me about my last results which I told her about, said I went for the colposcopy and she appeared confused and said so, this was 12 months ago? I explained it was just over three years ago and she told me I should have come back after 12 months. I was annoyed but just got on with it, told results 2-4 weeks but to call after 6. Well I was worried and so called after 4, then 5 and then eventually on the 6th week, I was told normal, no recall by the receptionist. This was 23rd April. I then receive a letter in the post on the 23rd April telling me I'm again hpv positive and borderline changes. I've then since received a letter on the 26th April for a colposcopy 1st May. So that I am at least grateful for. 

I feel I'm over reacting and worrying, overthinking. I'm 32 with no parents or partner and a 13 year old daughter. I've been checking my contract at work to ensure I definitely get death in service and that it's protected so my daughter is the beneficiary, along with my pensions. I have gone down that rabbit hole but, I think reading someone so openly talk about their own thoughts, anxiety's etc, well it's just been really comforting, so thank you, really thank you xxx

 

1 Like
74

Hey Sbd88,

You're not alone!

I'm sure the colposcopy appointment will reasure you. If it's borderline changes you will be absolutely fine. I had borderline changes for years which were just monitored. However, definitely push for yearly recall.

Let us know how you get on.

Xx

75

Hi sbs,

 

What a worrying time for you. Its completely understandable that your anxiety will be sky rocketing right now. Although very positive that they feel the changes are borderline.

 

I think whatever the results we get from our smear or biopsies, the way we process them and the waiting period until we get final confirmation can be excruciating. Don't be afraid to have a chat to your GP. Mine has put me on some anxiety medication now just to help me get through the next few months and I'm certain, if you explain how scared you are and the processes you've been going through, your GP will be really supportive.

 

Really pleased my posts have helped. Please do stay in touch and let us know how you get on. Xx

76

Update 3 days post LLETZ number 2:

 

Firstly, I want to start by saying wow! My recovery this time round is completely different to last time! I have not had sore vaginal walls or outer vagina at all. This makes me think it must have been that large speculum last time.

 

I've still experienced some pain, but just the dragging and tugging you might get during a particularly painful period and an achiness in my pelvic bones and lower back.

 

I've not had any real discharge until today. Last few days was just the liquid they'd used coming out.

 

Today though, true to form like last time on day 3, came the lumpy disgusting fleshy thing! Eurgh! Which isn't flesh at all, it is just the paste they apply to stop you bleeding.

 

As soon as that left my body I've started with discharge and lots of it.

 

But I'm feeling so much better this time round!

 

I thought it might be helpful to list the questions I asked during my appointment and the answers my consultant gave:

 

Why has my cancer grown quicker than 10-20 years?

 

If it took 10 to 20 years for cancer to grow, we would only do smears every 10 years... Stop googling!

 

Can you see when I had my last smear?

 

No, ask GP.

 

How much of my cervix is being removed today?

Likely the same amount as last time but I'll decide when I see your cervix.

 

Will you be using the liquids on my cervix again today?

 

Yes, the iodine.

 

When can I have a bath? (last time I was told after 6 weeks).

 

Have you been googling again? You do not have to wait at all. You can have a bath tonight even. (After they removed so much they did change this to waiting at least 24 hours).

 

I got a urine infection last time, does this mean I'm more likely to get one again?

 

It is a procedure with a moderate risk of infection due to where it is, but having had an infection previously doesn't mean you are more prone to one this time.

 

Please can I have a picture of my cervix for beautifulcervix.com? (Yes, I dared to ask!)

 

Yes of course you can have a pic of your beautiful cervix. And thereafter everytime my cervix was mentioned he called it beautiful haha!

 

Will we book my appointment for results today?

 

Your results have to go to our pathology lab and then after that they will go to the specialist pathologist again. It's best we don't book your appointment until we know we have all the information.

 

Please can I see my macmillan nurse today?

 

Yes, I'll call her now for you and she'll meet you in the coffee area after we finish up.

 

Can my breast lump be linked to cervical cancer?

 

In my 30 years of working I have never come across anyone with cervical cancer moving to breast cancer or vice versa.

He wasn't as abrupt as my responses above, I've just kept it clear and simple here. 

 

I saw my GP on Tuesday. She immediately could feel the lump and also found a lump in my right breast. She said she is certain that they are fibrocystic breast disease (not cancer or a precursor to cancer). But she has referred me on the urgent cancer pathway given my current situation and I'll have an appointment within two weeks. She also said if I don't have an appointment through by Friday to give the secretary a call and they will chase it up for me.

 

We also spoke about my heightened anxiety right now and trouble sleeping and she has given me anxiety medication and antihistamines that have drowsiness as a side effect to help me sleep.

 

So along with my antibiotics for my inflamed gynae area, I feel like I'll rattle when I walk! ?

 

I am feeling much better though. Although, I had friends plan to come round each day and so far the first one didn't show, and apologised due to something coming up.

 

Second one showed but her toddler wasn't happy so they had to go pretty quick, and third today called just before she was due and said couldn't come after all.

So that's felt pretty rubbish. They have no idea of the efforts I've gone to to try and make the house look half decent when I've not meant to have been doing anything! But hey ho, that's life! And I know it doesn't revolve around me.

 

I just wish they'd told me they weren't coming days before, instead of after all the effort had been made if that makes sense?

 

I hope you are all doing okay? I have been thinking of you all often. Lots of love xxx

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77

Hi lemon lavender,

I keep checking to see how you're doing. I'm glad to hear your doctor has been very thorough regarding the breast lumps. I'm sure you'll get some reassurance from the specialist soon that all is fine in that area!

It's such a worrying time, isn't it? I've started getting lower back pain and keep wondering if I'm going to have kidney failure! I still have this feeling that the doctors might have missed something. Part of me just hopes that feeling will fade with time, but part of me hopes that they do some more checks just to be sure. I'm going to ask my cancer nurse next time I speak to her.

I'm glad to hear you're feeling much better this time round.

Lots of love,

Xx

 

78

Oh lovely, my heart breaks for you.

 

I have seen a few places that after a diagnosis the worrying that it might come back is something that tends to stay with us, at least initially.

 

Wish I could give you a big hug. Keep talking to your GP too as they will hopefully help alleviate your fears through reassurance and even further scans etc when necessary.

 

Big, big hugs lovely xx

79

Big hugs to you too! Let us know how the appointments go and your test results.

I've had so much support from this forum. It's really helped me through what would otherwise be a very lonely and worrying time. Sending love support to you too.

Lots of love, xx

80

Update day 5 after second LLETZ:

 

I can't believe the difference in me this time round. I'm even wondering if the anxiety of the unknown hindered my healing last time.

 

I don't feel worried at all about my pill break and other than just a slight tugging/dragging and occasional spasming of my uterus and possibly cervix I am okay.

 

Discharge is not too bad. Started to get the metallic smell again. Not had any black bits yet, just the bits of the paste they put on.

 

Those reading this who have a planned LLETZ, it's I'd still stick by booking a week off work, but already I feel like I could easily go for a gentle walk (not that I have haha).

 

Night night and sweet dreams everyone xxx

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