What were your waiting times?

Cervical screening (smear test)
41

Update week 9:

My head hasn't been in a good place at all. I've found myself going down the research route. Trying to discover what further tests check for and why they are needed.

 

Are they wondering if the cells have started to invade the barrier that changes a diagnosis from CIN III to cancer?

 

Are they discussing if the nuclei of the cells is borderline large enough to be classified as cancer?

 

Do they think I might possibly have some CGIN changes too, but it's borderline?

 

Are they wondering if I have a rarer type of cancer?

 

Are rarer types of cancers more aggressive?

 

Will I need an operation?

Will I need chemotherapy and radiotherapy?

Will I lose my hair?

How will my family feel if I have to go through this? How is it going to effect them?

Will I get very poorly?

Will my business survive?

 

Why did the secretary not just say 'sorry there's no letter and everyone is on leave for Easter, they'll get a letter sent upon their return'. Then I'd be none the wiser.

 

Both the secretary and the receptionist at different points have said 'oh it's being discussed at MDT due to a discrepancy in your results of smear and biopsy'. It's wrong that they just tell people that without even looking at the notes on file, as that's made me more worried when I have letters that say otherwise.

 

And I know I'm over thinking. I know I'm over analysing and I know I'm doing myself no good right now, but these thoughts are popping up all the same.

 

If on two separate occasions I have been told misinformation, does that mean I was given wrong information by the colposcopy nurse too? Why did she tell me they were discussing if the diathermy ablation would be enough to have got rid of the abnormal cells left behind, if that wasn't true?

 

If it is cancer, why am I not being treated ASAP?

 

I called the consultants secretary back a few days later because I've gotten myself into such a panic and she said she's sorry but until my file is updated after the mdt meeting there's nothing more on it.

 

But surely, whatever tests have been completed are on my file, where else will they be storing the data?

 

I asked if she could tell me exactly what the further tests were for and she said she doesn't know. I cried my eyes out on the phone with her.

 

What if they come back now and say test of cure in 6 months? Great news yes, but what borderline concerns did they have and am I just a test subject... Let's see if cancer develops over the next few months instead? I don't want to have this hanging over me. 

 

I know these are rambling questions of a terrified woman who is possibly completely over reacting and in fight or flight mode. I know that I haven't been given a diagnosis. I know I haven't been told I have cancer. I know I haven't been whisked in fast for treatment. But the illogical side of me is overriding my logical side right now.

 

This post was started as a diary to help others to know what they're experiencing is "normal". So despite my crazy ramblings, I'm posting anyway so that people can see that they are not alone in their own spiralling thoughts.

 

I've barred myself from research and I'm limiting myself to only two more visits to the forum before Fridays oncology mdt. I have a book ready to read and dive deep into as well.

If you are someone who is worrying too, I'm sending you love and can highly recommend this forum, the helpline and providing yourself with distractions xx

4 Likes
42

I am sending you lots of positive thoughts of love and healing just now and I really hope you receive good news...I love reading your posts as they give so much detail xx

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43

Sending you big hugs. Hope you find out more information soon. ? xx

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Thanks so much everyone. I'm feeling much better now I've stopped researching.

 

Only 3 more days ?

 

I hope you're all doing okay? Xx

45

Update - still week 9

 

I called for the results of this mornings oncology MDT and was told the secretary has finished for the day now and the consultant is in clinic all afternoon.

 

I broke my heart on the phone. I couldn't even speak properly to say what I wanted to say.

 

She said she will try and catch the consultant between appointments today but it's best I ring on Monday first thing.

 

The past two nights I've barely slept, my stomach has been in knots. I've felt so sick today with worry... And she told me to give her a call after she knew she would have left work for the day.

 

It's cruel. Beyond cruel. Why not just tell me to call on Monday?

?

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Sounds like you have had a horrid experience with communication . I work in a hospital and would say it may not help you now but will help others if you contact the hospitals Pals department patient advice liaison service and put in a cause of concern . I can't imagine how you must be feeling . Best wishes xx 

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Thank you Mabel,

 

I'm keeping this as a diary so I'll definitely do something when I'm in the right head space. X

48

Update week 9 copied and pasted from a separate post I've just written. 

 

I'm so sad to be writing this.

 

I called today like the secretary told me to at exactly the time she told me to and she had left to go home for the day! 

 

The person I spoke to said the consultant was in clinic all day so call back Monday.

 

I rang back and explained I don't think that's my consultant (last week I was put on to her as mine was on leave). She looked into it and confirmed I had a different consultant and his dictated letters were currently being written up and she'd call me back ASAP and read the letter out loud to me.

 

Phone call arrives a couple of hours later. "I'm so sorry to be having to tell you this after everything else today, but your case was not in your consultants dictations. We've looked and you have been transferred to a new consultant and he needs to see you face to face. His secretary is on leave today but she's back on Monday and will call you to arrange a face to face appointment as soon as possible. I'm so, so sorry but I'm not allowed to tell you anything else over the phone".

 

Could it be anything other than cancer? My LLETZ biopsy got sent off for further testing by a lead specialist at the City hospital due to it possibly containing more than 'just precancerous cells'. I was told that two weeks ago.

 

On Tuesday it will be 10 weeks since my LLETZ.

 

I'm so upset. I'd love to know if anyone else has been called back for a face to face appointment for something other than cancer. 

 

 

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Dear lemon lavender,

I'm so sorry it has turned out like this for you. I can only imagine how you must be feeling. I hope you have success with speaking to the consultants secretary on Monday and hopefully a face-face appointment next week. I do think more consideration needs to be given to mental health in these circumstances.

Lots of love,

Xx

50

Thank you dreamland. It's interesting because all the research papers published in journals and the government guidelines talk about mental health being a serious consideration and that anyone who has been referred for a colposcopy should be offered counselling. I've never been asked about how I'm feeling during all this, let alone been offered counselling.

 

I'm not sure if that's down to a lack of resources because of covid, or it's just normal practice and there's never enough resources to offer counselling.

 

And as, far as I'm aware, my GP practice have no clue that this is still ongoing as that letter I got back in February said I'd be discussed at MDT but likely test of cure in 6 months. I haven't spoke to my gp practice as I really don't like speaking to the receptionists.

 

I hope you're all doing okay xx

51

I've been pretty sick with the worry of it all to be honest, but feeling much better now I've had my treatment. I'm still waiting for results so there is still some apprehension. I was offered counselling as soon as I got my cancer diagnosis. I accepted, but that's the last I heard of it. I should think the appointment will come through at some point and I will be grateful for it but it would have been helpful to have had some mental health support already. I have been assigned a Macmillan nurse who has been a great support. I hope you get some more support soon too. Perhaps you could speak to your GP about a referral for counselling?

Sending lots of love, xx

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I'm so sorry to hear you've not had the counselling yet. Our local counselling service has a 7 month waiting list so I'm wondering if your area may be similar. Although perhaps there's a separate service for oncology patients?

 

I really hope you get some support soon and I'm so pleased your macmillan nurse is wonderful. Keeping everything crossed for your results xx

53

Hi everyone,

 

Thank you so much for all of your wonderfully kind words and love and hugs. I rang at 8am this morning and was told I'd get a call back.

 

They've just returned my call and said someone from their booking office will call me today to book me in for an appointment on Wednesday afternoon with my new consultant who will be able to explain everything that they've found. I'm allowed to bring someone with me.

 

So for now it is more waiting. But on a positive note, it is my fiancé's birthday today and we're going away until Wednesday, so I'll do my utmost to have the best time and try and have two whole days without mentioning it or reading about it or anything at all and maybe it will go a little faster than this last weekend?

Lots of love to you all xxx

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Have a wonderful time away!

I'm glad you're going to get some answers this week.

Sending love,

xx

55

Update week 10:

 

Not an update I wanted to be giving you all. But yesterday I was diagnosed with cervical cancer. 3 foci (microscopic pieces of cancer) were found and had a gap of 3mm from the edge of my biopsies. So, although my biopsy margins (the edge of the lumps of tissue they removed during my LLETZ) were not clear of CIN III, they were clear of squamous cell carcinoma.

 

What happened at my appointment:

 

My appointment was booked for 4pm, I got in at 5:45pm, but I didn't mind the wait. You don't want to put a time on how long it takes to give people the news they have cancer.

 

I had my fiancé with me, which had been preapproved by the secretary I'd spoke with on Monday. The receptionist checked and double checked that he had been approved to be with me (due to covid).

 

A nurse came to get us and both the nurse and consultant apologised for the wait. The consultant asked if I was panicking. I nodded, and he said please do not panic. I can assure you, you have nothing to panic about.

 

For a few moments I thought that meant I didn't have cancer.

 

He drew the cervix on a notepad and explained I had had a large biopsy taken during my LLETZ. Within that biopsy 3 foci had been found, which were very tiny amounts of squamous cells within the CIN III.

 

He explained my biopsy had been sent for a second review before the colposcopy MDT on 16th March and that the review came back that the pathologists who had previously been looking at my biopsy were general pathologists who look at all kinds of cells every day from all different parts of the body and therefore not an expert in cervical cells. And because they were uncertain as to whether tiny pieces of cancer were visible, they wanted a lead pathologist who only sees cervical biopsies to take a look.

Unfortunately, the lead pathologist confirmed that they were right to have it checked by a specialist.

 

But as it is so small between 0.1mm and 0.3mm and 3mm away from the margins, they do think they have got it all.

 

But they know they haven't got all of the severe precancerous cells as all edges of the biopsy were positive. They are hoping that the diathermy ablation I was given on my first LLETZ will have got rid of any remaining CIN III, but I'll be booked in next week for a further LLETZ so they can check.

 

My next biopsy will be sent off to the specialist pathologist too so that it can be fully checked for the cancerous cells, which means it will be another six weeks before I get my results.

 

He said once we get the results, I'll be brought back in to see him and we will likely be discussing how we will monitor me over the next five years more closely.

 

If the results are not good news then we will be discussing the possibility of hysterectomy and other treatment options.

 

I said I have had my children so I am okay with having a hysterectomy if it's needed. He explained that many women in similar positions may say they would rather a hysterectomy than another LLETZ and to keep going through it, but that the next LLETZ would determine what kind of hysterectomy was needed (if one was needed at all) and therefore he strongly recommends the LLETZ first.

 

His bedside manner was amazing. He was so lovely. Even though he should have finished work at 5pm, he was attentive and reassuring and then explained the nurse would take us out to talk to us some more. He also recorded his dictated letter whilst we were there so that we would know exactly what it included now and not have to worry and wait again. 

 

We were taken to a different room where the nurse introduced herself and explained that she is my macmillan nurse and will be my nurse for the next 5 years. She gave us a pack of information. Asked about finances and explained if ever our circumstances changed and we were struggling then to let her know as they have a benefits macmillan specialist who can help.

 

She asked if I pay for prescriptions and I said yes. And she explained that from the date of diagnosis for 5 years afterwards I will be exempt. My fiancé said 'just after you paid for a year's of prescriptions too' and she explained you can be refunded for that too.

 

She explained I could call her any time Monday to Friday 9-5 and told me about Jo's trust and forum and the macmillan helpline etc too.

 

She also said that after 5 years of close monitoring I will be given the option to be discharged or to keep being closely monitored for another five years. This was reassuring. 

 

And then we said goodbye and left at 6:30pm (we had arrived at 3:30pm).

 

How am I feeling?

 

Relieved. After all the waiting. I'm really just relieved to finally know what they know. I do know that it's common for cervical cancer to be recatergorised after further biopsies, but right now I'm okay with that. I've been given a waiting time of 6 weeks and been told I will be seen by him then too. So I feel okay. Possibly a little bit numb. We both cried with relief. But on Friday when I was told I'd have my letter, read out, then told there's no letter and I need an urgent face to face appointment, I knew then I had cancer, and I cried my tears for that then. 

 

It feels weird to know that I have or have had cancer. But I'm okay. The biggest relief for me is that I'm up to date. They don't know anything that I don't, and that feels good.

 

Those of you who are reading this and are at the start of your journey:

 

Please don't stress. My case is very unusual because they found the cancer so early, and usually people are brought in to have their results explained within two weeks if there is a cancer diagnosis. It just needed longer as it was difficult to diagnose. 

 

If you're at the beginning of your journey, the best thing I can recommend is to plan lots of amazing fun activities to do to keep you occupied and stop your brain from thinking all kinds of horrendous possibilities that in all probabilities are highly unlikely to happen anyway.

 

Sending much love to all of you reading xx

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56

Sending you all love and glad your care is so good and they seem to be absolutely on the case 

xxxx

I found out this morning just by the receptionist that my lletz will go ahead within 4 weeks so I'll keep everyone posted about that

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57

I'm so pleased you finally have a definite time frame! It's about time. I hope you're feeling okay Rebecca xxx

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I'm so glad you have answers now, lemon lavender.

The waiting must have been horrendous. I realise looking at your backstory that my timescale had been equally long however for most of my waiting I was completely oblivious to any serious issues. I had my smear test in November last year but didn't get the lletz until February this year. Once the cancer was found they acted pretty quickly to tell me and then to book me in for the second lletz. I hoping my second lletz results come through quickly. My Macmillan nurse is pretty good at chasing results up for me. I wonder if you could ask yours to try to fast track it?

 

Rebecca: I'm glad you've got a timeframe for your lletz now. Keep us posted.

Sending lots of love, xx

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I was kind of ok but as it was my daughter's internment I was fairly edgy and have been signed off 2 days more compassionate leave. I was also told I could have some after the lletz, which I feel i might need 

Thank you so much for asking xxxxx

I sat with my friend in the graveyard. That was helpful  

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I will do x 

Love to both you and LL and everyone else