Frustrated and feel in the dark!!

Cervical cancer treatment
1

Hi all

 

I just wanted a bit of feedback and advice on your own experiences about diagnosis, waiting times and general information.

I'm feeling really frustated about the situation, and almost as if I have been given this diagnosis then left to figure it all out myself. I have found all my info out from websites like this one, as no one i.e. a medical professional has really told me anything.

When I went for my LLETZ biopsy results I was seen by the doctor who carried out my LLETZ and he told me I had cancer, and that it was stage 1 (although everyone else says theirs wasn't graded until after their MRI). He told me that my next appointment would be an MRI within the next week and then I'd have an appointment with a consultant a few days after that to discuss treatment. This is not a summary of what I was told, this is ALL I was told, then given a macmillan booklet then left the hospital. I felt so confused and scared as I had no idea what to feel and I had been given the bare minimun info.

In my macmillan pack there was a card for the clinical nurse specialist, so I emailed her to ask for some more information. She was great and told me that my MRI would be within 3 weeks, not 1 (in fact ended up being 2 weeks after diagnosis) and that I wasn't going to meet the consultant the next week, that the doctor must have meant that this was the MDT meeting about me that I wouldn't attend.

After my MRI the person who carried it out told me my results would be available that same day to be reviewed, but then I had to wait almost a week after that for the next MDT meeting, and then my nurse rang me and told me that (thankfully!) it was very early stages, and that I'd have a meeting with a surgeon the following week. When I received my letter it was in fact 3 weeks until my surgeon appointment, which will be 6 weeks after diagnosis, and then I'll have a further wait before any treatment takes place.

 

What I want to know is, is it normal to have such long waits in between appointments, and is it normal that I was diagnosed 4 weeks ago but haven't even seen a doctor, a nurse, a consultant or a surgeon yet?

 

So sorry for the lenghty post, quite aware that I'm moaning a lot but I'm just very confused and annoyed.

 

Thank you :)

2

As you can see from my footer I had very long waiting times before even being diagnosed, then after diagnosis it was 3 months before I had my hysterectomy (they diagnosed on 8th may I now know from my notes). I think it varies where you are and on an individual basis. I was told they thought the lletz under GA had cleared everything , which was why I wasn’t an urgent priority. The waiting is very frustrating, and yes in my case I felt it was very much up to me to find my own info. The nurse has helped, but some of what she says contradicts what the consultant has said, so I did all my own research as much as I could before making a treatment choice. I found here and the hystersisters websites good for finding other people’s experiences. As you say the leaflets etc can be quite vague, the section relating to my type of cancer just says ‘speak to your health professional’!
Anyway, enough waffling from me. I hope you get your stage soon and at least know where you stand.
All the best.x

3

Thanks for your reply :) sometimes it's just good to know other people's experiences. I think if I'd had someone to speak to after diagnosis to ask questions etc I would've felt much better, but instead I just felt like it was "you have cancer, off you go now" and I just went back to work as if nothing had happened! I just want to know what I'm going to need doing, so then I can deal with it, instead of speculating and worrying. I haven't told my parents yet because then they'd be worrying and speculating too and I want to tell them when I have all the information to give them. I've got a few people around me that know and they've been great but it's been fab to have websites like this to see what other people go through so you know you're not alone.

4

I'm so sorry that you have had such a rough start to your cc journey...

 

I thought I had it bad having to wait for meetings after diagnosis but found I have actually had a good ride and now I have calmed down, I can see that it was actually ok. I felt in the dark but have realised that I haven't been forgotten, it's just that everything has happened without me.

 

you see, at my diagnosis the consultant mumbled out that I had cancer and was early stage and would need a hysterectomy and that was it. He left, I was left with a nurse in shock asking if I had any questions but I didn't as I didn't know what to ask. She said I would most prob have meeting with surgeon at Nottingham the following Wednesday but would depend on when had MRI. So went home in a daze

 

Local hospital rang that day to say MRI Booked for following Wed then got letter through a few days later to say go to Nottingham straight after MRI. So that's what I did this past Wed. I sat and imagined the worst and was in a complete state but when went in to see consultant he told me MRI back clear and was 1b1 as he had thought from the loop procedure results and then opened his diary to show a postit note put in his diary for my hysterectomy on 24th which had been stuck there even before I had been told diagnosis as they had met the previous week at MDT meeting!  

This shows they already knew everything they needed to know about me and had booked everything in before even seeing me and telling me and that is the important bit!! They have these MDT meetings to discuss lots of patients and get things sorted then tell us. May seem cold but us knowing isnt actually the important bit, getting the treatment organised in the right time is though. Yes, we sit and worry but as long as they are sorting us then that is good. I can only see that I think now I have my hysterectomy in the diary.

Sorry to have waffled on but I am really tired tonight. I could have explained this in half the words if had a clear mind!

I hope it helps. Thinking of you x

5

Hello.
I hope you’re holding up ok… Unfortunately the waiting seems normal ! It’s by far the worst time aswell! … I would pester that nurse of yours as much as possible! And everytime you see your consultant go in with a list of questions… This really helped me.

I was diagnosed on 17th May… (2 weeks after my lletz) Then I had my MRI a couple of weeks later… A week until the results then another week until
I met my consultant and my op was 10th July… So about 2 months waiting!

I hope you’re staying strong… Surround yourself with people and things you love, this really helped me… And I actually had a great time through all the waiting!

Take care

Em xxx

6

Thanks for your replies. I'm so glad I started using this forum as it's so good to talk to people who understand how you're feeling! xx