I've been lurking here for a while as I've been going through the stages of being diagnosed, and thought it was time to join up! I've recently been diagnosed as having stage 1b1 after cone biopsy, and have a hysterectomy scheduled for early June. I feel as though I'm "lucky", as I've completed my family, so fertility isn't an issue for me, but I get so paranoid that maybe the Dr's have got it wrong, and it's further on than what they thought. I've recently had a CT scan that I'll get the results from next week, and I'm afraid that I'll get bad news. I guess what I'm wondering is whether the staging from LLETZ or cone biopsy is pretty accurate, or is it common to get staged up after having scans? Thanks lovelies.
im sorry to hear about your diagnosis as it is such a hard time. First I would like to tell you that where you are in this journey is defiantly the hardest part. All of the unknowns and waiting and emotions are very hard to mentally get through. However, once you do get a plan in place you can focus on that part and you will be able to centre yourself.
So, usually or commonly they are pretty accurate in the initial guess of the staging and plan but the scans are for making sure. There would be nothing worse then going in for surgury to wake up and find out that the surgury was aborted because of spread. Now, I do want to tell you that even though your staging might be the same it will depend on if lymphnodes are involved and if that is the case you will go straight to chemorad. Right now just keep busy stay positive and hang out hear not on Google.
Thanks Lolli, the waiting really does mess with my head! I will try very hard to stay away from the Google, and keep my fingers crossed that the first assessment was accurate.
Hi there - sorry to hear of your diagnosis. You've definitely come to the right place.
It's been an absolute life saver for me, especially during the first few weeks.
As already mentioned by Lolli this is the absolute worst waiting for news and imagining all different kinds of scenarios. At this point my mind was playing tricks on me and I kept thinking it had spread everywhere etc.
They will have a pretty accurate idea from the dimensions of the tumour which was taken out already. This was exactly the same for me, they said I was at least 1b1 as the amount they had taken out was 2cm by 1cm or something along those lines.
During the scans they'll want to see that everything joins up and is in line with this. To put your mind at rest I asked my Surgeon the same question, what if the stage goes up etc? He said that this happens in 15% of cases, so statistically the odds are in your favour.
Best of luck and please feel free to message if you'd like to chat further.
ive literallly just signed up to comment as I'm in a very similar position. Sadly I don't have any answers for you, I'm just joining in As I'd like any information from anyone as well.
told they think it's stage 1b (don't know the second bit) and have had my MRI and CT scan this week. Got an appointment tomorrow to find out the results. I'm like a little bowl of jelly as I'm prettified it's spread.
Good luck Gilly - we are all thinking of you xxx
Thank you. I now have something to add which might help. I was told they thoght it was stage 1b, had MRI and CT scan and got results today. Still stage 1b so their initial thoughts were bang on. Waiting for operation date. Just trust that theyre probably right and if not they're not going to be far off the mark.
hope this helps. Xxxx
Thanks Gilly and Rachel! Glad that your staging has stayed the same Gilly, it gives me some confidence going into my appointment tomorrow.
Good luck stormchaser and let us know how you get on! x
Stormchaser, good luck. You probably have already had your appointment by now and I know how awful that feels before you get in there. Hope all went well. Let us know, we're all here for you.
Hi all, yes, have had my appointment and all my worry was for no reason as I'm still 1b1, and radical hysterectomy is booked for 2 weeks time. The CT showed no sign of lymph node involvement, but they are taking them out anyway. I'm relieved that there is no sign of any spread, and even though having a hysterectomy and the recovery from it will be tough I can't wait to get through this and put it behind me. When is your surgery scheduled for Gilly?
Yey! I'm so pelased for you and have been thinking about your post and hoping you would get this news. It's the best news you could have hoped for. Do you know if yours was squamous or adenocarcinom (the glandular one). I'm just curious as I have adenocarcinoma.
I feel exactly the same, get me in for the op! I was only referred on Friday, so I'm hoping to get a letter come through this wee with my appointment. I'm having a trachelectomy, I think because I'd mentioned that we'd been trying for our second baby and I have had two miscarriages right before my smear.
Really pleased for you.
The waiting for things to happen is the most frustrating part of the journey isn't it? Your timeline looks really similar to mine, except that I had punch biopsys confirming microinvasion at my colposcopy, so that's why they did the cone biopsy rather than the LLETZ, and at that time my surgeon said that they wouldn't be able to do the hysterectomy until 6 weeks after the cone " to let things settle down in there", I don't know if that's normal procedure, or his preference, or just how things are done here rather than the UK (I am in Australia). And 6 weeks to the day after the cone is H Day. Mine was SSC, rather than adeno. Hope you get your date soon Gilly, did they give you even a rough idea of when it would be, or do you just have to wait for the letter?
Ah I see. they never mentioned a 6 week wait and I had got dates through for a hysterectomy (now cancelled!) which would have been just under 6 weeks. So I guess it's probably different here!
yours can't be too far away! If you're like me you just want it to happen now. Good luck. Xxx