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My story - hoping it helps others!

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worryingwarrior
My story - hoping it helps others!

Hi Everyone,

I wanted to share my story from the past few months in the hope it helps others on this rollercoaster of a journey.

The Jo's trust forum has helped me, my partner and family understand processess, experiences and a little of what to expect thoughout, I can't say enough how much the forum helped me in the thoughest times, and I'm hoping I can help others.

A bit of background - I'm 31, UK based, never smoked, no children, gym goer, healthy eater, pervious smears were clear, never had any medical issues...never even had a filling! 

My periods have always been clockwork, late last year I had a 2 day period after a spinning class. A quick Google found this can happen, and not really much to worry about.

My smear test had come through, so I booked in to see a Doctor in December as I knew something wasn't quite right. Along with my smear test, I had STI and Bacterial tests done (lot's of poking about!) and bled quite a bit after the test. The Doctor said then it could be Cervical Cancer and I was a bit shelled shocked, but convinced myself it couldn't be. Cancer happened to others - not me.

Fast fowards a few days and the Doctor confirmed I'd have a bacterial infection, course of antibiotics and nothing to worry about.

Then I recieved my smear test results - "severe abnormal cells" and was called in for a colposcopy the end of Decemeber - and I thought, "Ah nothing to worry about, it'll be a false negative result from that infection, I'll go in, tell them about the infection and I'll be out again."

Not quite.

I headed in for the colposcopy, and told the nurse about the infection, and she gently corrected me that's not how severe abnormal cells work, and that I was likely to have the lletz there and then. I hadn't mentally prepared for this, and was then taken to the colposcopy room in a bit of a panic! On closer inspection the nurse found there was large amount of something there and took a biospy. She said I'd have to come back and have the lletz done under general anesthetic as it was to much to do there and then - which suited me as the biospy nearly made me pass out - not from pain - just because I'm a wimp!

I then had to wait for the results. Everyone on here says that the waiting is the worst - it really is.

I knew I had cancer, but didn't know how much. I was having pains all over, convinced myself it must be late stage, and feared the very worst. Even when I was logically telling myself my previous smear was clear, I'd had minor symptoms, it didn't make sense to be late stage.

I had fantastic support from my boyfriend, family and friends who listened and helped keep me busy during this time, although I knew they were going through similar scary thoughts.

I then recieved a letter to go in and see the consultant on the 7th of January. Nothing else in the letter. I knew this meant cancer.

We were so nervous before going in, and then so relieved when the consultant confirmed early stage cancer (Squamous cell), possibly 1B1 as it was visible to the naked eye. The next step was an MRI scan to find out more. 

I then had to wait for the MRI results, and for the MDT meeting to confirm next steps. As it wasn't sure if a lletz loop would be needed, or we'd go straight for trachelectomy. I didn't know what a trachelectomy involved, and one morning read up on this...and almost passed out from the idea of it all. (Told you I was a wimp!)

The MRI results came through, and it was decided that it looked to be 5mm in depth and 7mm wide, so a big 1cm lletz loop would be the first step.

I had my loop 30th January, under general anesthetic. I took a few days off work to recover, both physically and mentally. However very little pain, and no infection afterwards.

A week later (the longest week ever) I had the fantastic news that the biospy done on the piece of cervix removed showed clear margins, and no evidence in my blood stream. However the hospital wanted to do a CT Scan to check it wasn't anywhere else in my body.

I had a CT scan a week later, in the run up to the scan my boobs hurt, I had a pain in my side, the bad thoughts of cancer all over were back again. And again the waiting for the results...a week later these came back all clear.

Now to see the senior consultant, to see what the next steps were going to be. I had told myself there could be many options, another loop, loop + lymph nodes, trachelectomy, radio, anything could be on the table. The day before I was due to see the senior, my appointment was cancelled as my results hadn't been discussed in the MDT meeting - I was beyond frustrated. I just wanted to know what was going on. I was booked back in for 2 weeks later...by this point I was pretty much healed from the loop, and was hoping that a trachelectomy wasn't going to be the option.

So finally saw the senior consultant last week - and I'd had a lucky escape. Although there was a mixture of CIN3 and Squamous, the depth of the cancer had actually only reached 0.3mm! A tiny amount, and based on the new grading I was back down to a 1a1. Clear margins, no blood stream involvement, and clear CT Scan means that I'm now clear and will be monitored for the next 10 years.

Typing this out now it's so hard to remember those extreme emotions, and how scared I felt. But I was terrified. 

I wanted to say if you're at the start, you'll be ok, it will be tough, but you'll get through it.

My advice is don't look for your story in others (I did this often) and it wasn't all that helpful, everyone is so different. Different lifestyles, ages, locations, it makes every diagnosis different. The biggest thing I took comfort in from everyone's stories is that we're still here! Even the ladies going through very tough journies with later stages, they're still here.

The waiting is the worst. And your mind will convince you of the most awful things whilst you're waiting, try and write down all the logical things you know and keep referring back to these when your mind is playing up.

Be patient but persistant with the hospital, the NHS are doing an absoultely amazing job, but they are so swamped. Don't be afraid to call and ask what's happening, sometimes they might not have an update, but a quick poke via the phone let's them know you're waiting for info. Be Brave! 

I also took the offer of conselling and found this helped my anxiety so much, along with journelling, meditation and aromathrepahy. It feels a bit daft to start with, but let your preconceptions go and go along with it. It really worked for me!

Wow. Sorry that turned out to be much longer than I anticipated. I hope it helps someone though, please message if you have any questions and I'll try and help.

WorryingWarrior

LK26

Thank you for posting this <3

 

Renee
Renee's picture

Thank you so much for sharing this. 

You are so right about looking for your story in others! 

I wish you lots of health and happiness x 

September 2018 - Gynaecology visit, cervical ectropion 

Abnormal smear - CIN1 & HPV positive (Jan 2019) 

Colposcopy & Punch Biopsy (13th March 2019)

(17th April 2019) Biopsy results CIN1, smear in 12 months 

 

Kellyo

Thanks.

I'm waiting for my LLETZ results which im going in for on Tuesday 19th. I'm trying not to think one way or the other, but to be honest, I am expecting the worst as I was told "biopsy should resolve it" which it clearly didn't. I'm in SAfrica but from the UK. No one here has mentioned any CT scans? Which is a worry.. Will mention to my gyne Tuesday...

worryingwarrior

Hi Kellyo,

Hopefully you can get a CT Scan. Although it made me worry a lot in the run up, I also tried to flip it round and think that actually if it is somewhere else then I want to know about it, and get it sorted. So it was scary, but also helped! 

Fingers crossed for your LLETZ results, thinking of you, it's so hard not to think about the outcome. I always thought on the worst side as well, which I found helped me think realistically and come to terms with it all. Make sure you give yourself some self care time and rest this week.

Thank you Tivoli & Renee for your nice comments, this forum helped me so much I wanted to give back to any ladies going through the same.

Positive thoughts to all :)  

Kellyo

Thanks so much for the response. My OH is terrible with this kind of stuff, and I haven't really told anyone else as I don't want people to feel sorry for me or worry. There is so much to think about (do I go back to UK if I need more treatment? If I'm clear, do we try for a child that we are not sure we want as it could be last chance?) All big shit!! But without results, no point thinking further right? 

Thanks

Have screenshotted this contact number in case of a meltdown tomorrow....!

Xx

worryingwarrior

Hi Kellyo,

Just a quick msg to say I hope you've had some answers from your meeting yesterday, and are a bit clearer on next steps.

I completely understand not wanting to tell anyone, I'm terrible at keeping secrets so told my closest friends and family. I tried my best to explain each step of the way so they didn't worry, and kept reassuring them that even at worst case I'd still be ok. I hate being burden on anyone, but it really helped getting other perspectives! 

Also know what you mean about the big shit! I have no patience which added to the mix! Try your best to take each day as it comes (easier said than done!), and you're right until you have results you're just guessing and tormenting yourself. I found meditation and keeping a diary helped me be more rational about the big questions, and think more in the now, it feels a bit daft at first but it could help!

Hope you're as best as can be xx

Kellyo

Unsuccessful. Outer margins clear, inner not clear!

So, I'm going for a smear 24th April when I'm healed from LLETZ as gyne said she does quite a deep burn during lost a which may have got them. If not, straight into a cone biopsy. There will be a pathologist in cone surgery checking tissue removed. If cone can't go deep enough, they will do a hysterectomy while I'm still under. 

Had a good cry with OH over this, but neither of us wants children, so the crying was a bit confusing...?? 

I was meant to go to UK to visit family but now have to postpone. Just told parents and managed to not freak them out, but just got told mum had a tumor on lung and they also waiting for PET scan results...FML...!

I not too freaked out at this point, there is a plan and my private health I strange is covering everything...

Thanks for your friendship. Xxxc

 

 

Kellyo

Thanks so much for the response. My OH is terrible with this kind of stuff, and I haven't really told anyone else as I don't want people to feel sorry for me or worry. There is so much to think about (do I go back to UK if I need more treatment? If I'm clear, do we try for a child that we are not sure we want as it could be last chance?) All big shit!! But without results, no point thinking further right? 

Thanks

Have screenshotted this contact number in case of a meltdown tomorrow....!

Xx

Tivoli
Tivoli's picture

Thanks so much for posting this :-) Positive stories are always welcome :-)

Be lucky :-)
Tivoli

cielobuttercup

Hey. Thanks for writing thus. I'm in the same boat but am waiting for those initial results post lletz and am naive so have had symptoms for probably about 2 years with worsening lower back cramping, I will be surprised if they come back clear.  I find throwing myself into work keeps my mind off of the waiting game and talking about things too. My favourite phrase is 'it is what it is!!!'

 

 

Girls, we've got this 

worryingwarrior

Hi Cielobuttercup,

Hope your wait isn't to long for the results, it's so hard to not guess what they'll be, but you're right 'it is what it is!', and the most important thing is it's been found now and something will be done to make sure it doesn't get any worse.

Completely agree try and keep yourself busy, but also give yourself some self care time and relaxtion if you can!

Kick ass! :) 

Lotty9000

Hi

Thank you so much for this thread! I’ve just been diagnosed with adenocarcinoma after an abnormal routine smear. I have had regular smears,never missed one and they have always been normal. I had Lletz on 1/5/19 and results on 8/5/19 showed villoglandular adenocarcinoma. I didn’t think I’d had any symptoms but since the letter came through with the abnormal smear results I’ve had abdominal pain.

I’m now waiting for MRI and CT, possible PET scan too. I’m absolutely thinking the worse. I went into the gynaecology ward yesterday with pain and heavy PV bleed and have antibiotics for a possible infection. A consultant spent ages with me yesterday talking me through things and trying to make me feel a bit less stressed. I’m probably going to have a radical hysterectomy with lymph node removal, I’m just hoping there is no lymph node involvement. 

Sorry this post has become a massive out pouring! But thank you all for sharing and please keep me updated with all your progress. It’s good to know I’m not alone.

C xx

 

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Cervical cancer