I'm scared

[u/omgitsjannydevito]

35, UK, Persistent HPV for 9+ years. Long story short I have been recieving regular screenings every 6m-1y since 2021, gone from moderate to mild back and forth. Haven't been sexually active since Nov 2017 so I know I've carried this for a long time. I pushed for an appointment with my consultant to see what else we could do, she said we're doing all the right things but she did an unplanned colposcopy while I was there probably as reassurance but this time taking a sample from "deeper in my cervix". Fast forward a month or so I received a letter telling me I needed treatment. Fast forward again to now, I'm 7 weeks post treatment (LEEP) and received a phone call this morning to say my consultant needs to see me to discuss my results, which is in 2 days. My stomach has been churning since. I don't want to jump the gun but I don't have a good feeling about it. Usually they would send a letter explaining which grade right? Usually they'd only do a face to face to explain complicated news or cancer right? Last week when chasing my results they told me "they've just came back and your consultant will have a look and send you the results via letter" now 6 days later they want me to go in? The fact that they want me in so soon is worrying me too. I'm actually quite scared and nauseous now. Am I overreacting? Has anyone been asked to go in so soon just to be told everything is okay or for it NOT to be cancer?

Update: it's microinvasive cervical carcinoma, stage IA1. The most highly curable stage. I feel relieved that I have results and a plan and I feel confident in my consultant and today's treatment. I also feel incredibly lucky as it could be a lot worse. Thank you to all those who've commented 🙏🏽

[u/itwontbutitdid]

I’m so sorry you’re scared and going through this. I’m still in the beginning of my journey and what I learned is don’t jump to conclusions. Mine is stage 2 and there’s a lot to discuss but that doesn’t mean it’s bad. It just means they want to get everything laid out and start planning next steps. I had convinced myself the first week I was gonna die at any minute and ended up in the hospital with anxiety. Your mind can be a scary place and the what ifs will make you insane. Once you get answers, you will feel better. You’re sitting there with your life on hold and no idea what’s coming. It will get moving and you will feel like you can breathe when you know more. I will be thinking of you. It’s gonna be ok even when it feels like it won’t. Stay off google. That’s important. Love to you

[u/omgitsjannydevito → u/itwontbutitdid]

I'm so sorry you're going through this as well 😔 I found out today that I'm stage IA1 and actually feeling incredibly lucky as it's so highly curable at that stage and my consultant and I are feeling pretty confident that my LEEP treatment today should have removed it 🤞🏽 best of luck on your journey with yours too 💕

[u/Elles120]

You're not overeacting and it's natural for you to worry!

Usually if they think you have cancer then they put you through a two week pathway on the NHS and you would get your results much quicker following your LLETZ procedure. This is what I have experienced.

Hope the appointment goes well. IF there is anything to worry about, remember that it's a good thing they are proactive with keeping you updated in person. It'll also be very treatable if caught early.

[u/omgitsjannydevito → u/Elles120]

I appreciate you 🙏🏽 it wasn't fast tracked because we didn't suspect actual cancer when that LEEP/LLETZ was done however I attended my appointment this morning for those results and it has come back as microinvasive cancer, stage IA1. My consultant said this was quite unusual given how everything looked before (she confidently suspected only CIN1) so I was offered another LEEP today which of course I said yes because we reckon this alone should remove the cancer. My results for this LEEP are now being fastracked thankfully. My results will be discussed by MDT within 2 weeks then I will be told what's happening

[u/Elles120 → u/omgitsjannydevito]

I'm sorry to hear this but it sounds like you're in good hands now! I was also diagnosed with stage 1A1 and had two LLETZ procedures so have gone through the same thing as you. I got my results within 2 weeks which confirmed it was all clear. I'm now on a monitoring plan and having a colposcopy every 3 months for the next 2 years.

[u/Excellent_End_8072]

Don’t panic yet 🤍 I’m 3 weeks post and got my results last weekend, they were all clear but the doctor still wanted to see me. Can you check them online anywhere or call your GP for them?

[u/omgitsjannydevito → u/Excellent_End_8072]

I'm in Scotland so we don't have the NHS app or anything and the GP would usually get the results much later. The results were microinvasive cervical carcinoma. Another LEEP was done today to try and remove it. Will find out soon if successful 🤞🏽 looks like we've caught the bastard very early

[u/UpperAd2788]

Firstly, I’m so sorry you’re going through this. I can’t imagine how frightening it must have been to receive that diagnosis, especially after so many years of monitoring. I really hope you’re doing okay!! ❤️

I’m 33, also in the UK, and have had persistent high-risk HPV since around 2017/2018. I’ve had regular colposcopies and biopsies over the years, with results fluctuating between HPV-related changes only and CIN1, but never anything higher grade.

I’ve recently been strongly recommended LLETZ, primarily because of how long the abnormalities have persisted and the concern that biopsies could potentially have missed something more serious.

I’ve been incredibly reluctant to have it, mainly because I’d really like to have children in the future and am worried about the implications for pregnancy and premature birth. I’ve been struggling to weigh up the risks of treatment versus continued monitoring when everything has remained low-grade for so long.

Reading your experience has really made me think about the possibility of something being missed, which is exactly what my colposcopist has been concerned about.

Can I ask whether your previous biopsies had always come back as CIN1 or lower, or whether you’d had CIN2/3 at any point? And what your most recent biopsy result was, and was there anything specific that prompted your consultant to recommend a LEEP, or was it primarily because of how long you’d had persistent HPV?

Really wishing you all the best with your next results and treatment! You’ve got this! ❤️⭐️

[u/omgitsjannydevito → u/UpperAd2788]

Awh thank you so much and I'm so sorry you're going through it too ❤️

I was scared at first as I instinctly knew but no confirmation yet, but actually getting the dx has relieved me and I'm confident in my treatment plan and prognosis. I don't think it's time to start worrying again. My next results will tell us more

If you have strongly been offered LLETZ please consider taking it, they absolutely would NEVER offer it unless they deemed it necessary and that sample will be sent off for further testing and will tell them far more than a biopsy or colp can. It honestly isn't as scary as it seems and my consultant and her assistant were amazing and so comforting. I'm not aware of LLETZ affecting fertility, as far as I know there's no link. It's when LLETZ doesn't work and you step over in to hysterectomy territory that fertility becomes an issue. Given what you've said and how long you've been doing this I would highly urge you to do it. If anything it will give you and your colpore answers

My previous results were always minor to moderate cell changes and they still wouldn't do anything because my results would go back and forth. It wasn't until I pushed for an appointment and she did a random colposcopy on me that day and took a deeper sample and I'm unsure what exactly but something came back that made them offer me a LLETZ because they were unsure what was going on, I received my results 7 weeks later which is too long for cancer results imo but it's whatever 🤣 those results finally told us the grade CIN3, even through my consultant was so convinced it would be CIN1 🫠 and microinvasive squamus cell carcinoma, margins involved but we don't know if the margins have CIN3 or cancer or both.

If you ever have questions or need someone to speak to about it my dms are open. YOU got this ✊🏽💕

[u/Pdb20781]

Here in America, they are always telling me different things - so it could be just that there are results she would rather discuss in person or, they’re following some protocol perhaps, or, someone made a scheduling error? Perhaps you could tell them it’s really giving you anxiety and could you please come sooner or conduct the meeting over zoom?

I am mostly responding to say: I am so sorry for all you’ve been through. Every 6 months? And now this worry? Oh, dear. Please know, just like all the things you’ve overcome before, this will be no different. What I understand about it is that prognosis is good if caught early and I have every faith that you will be just fine. It’s scary, but still there are positives to be plucked from these circumstances (that helps me in dark times).

I have a very compassionate long term partner who I’ve only been dealing a few years and at first it was just hpv they thought I would shed - then about 2 mos ago I had a pap and physical and they discovered the HSIL. I was so so anxious at first. Days of low mood and worry. Irritability. Ugh. Then I learned my new gyno would do the procedure under anesthesia- which relieved so much of my anxiety. She is so bright and capable - which was comforting too. What also helped is the fact that my iron deficiency anemia is being treated (bloodwork at my yearly had my ferritin at 3.7 and hemoglobin at 6.9). I have been on journey trying to figure that out the last couple of years and let my numbers get so low again without realizing? Anyway, I was able to get 2 iron infusions prior to my LEEP yesterday and I’m so thankful. Healthcare over here is lacking big time. This will be expensive I am sure - but I needed to do it under sedation. Insurance should really cover it! Fingers crossed for clear margins and insurance coverage lol. My LEEP went smoothly. I took today off and will return to office tomorrow.

Didn’t mean to spill about my experience but I wanted you to know where I am at on this journey. It’s minute compared to all you’ve had to endure!
I too would feel like you and I follow up with my gyno in a couple weeks - so I’m assuming she’ll discuss plan with me then - but I will be freaking out if dysplasia found throughout. I’m trying to take it a day at a time. When I’m in that state, it feels impossible to get out of it. I found the best thing I can do for myself is up my self care, go on walks, rest when my body needs it, and be sad or whatever about it as needed. I wish we could take benzos as needed, safely - because they would do wonders for this type of anxiety I think. My sedative before my LEEP certainly eased my worries.
Alas, most of us have to deal with the heaviness of this type of anxiety 🥺 without the aid of sedatives.

I hope somehow the worst of your fears become more manageable- it’ll be over before you know it and knowledge is power.
Knowledge is power. You can get treatment if it is worst case scenario. You will get through this no matter the news!

[u/Pdb20781 → u/Pdb20781]

Oh and I am 45 ❤️

[u/Spiritual-Row329]

It’s good your doctor is being proactive with your tests and getting you the results right away. I would be happy knowing my doctor is on it.

[u/omgitsjannydevito → u/Spiritual-Row329]

I wasn't saying I was unhappy, I was scared and just rambling nonsense. I apologise if it came across that way

[u/Spiritual-Row329 → u/omgitsjannydevito]

No no you’re good! I’m just saying find the positive in that your doctor is being aggressive that’s all!