Results - finally!! Need feedback

Well after 6 weeks of waiting and constant phone calls I have finally received a diagnosis. I have adenocarconoma of the cervix. I persuaded the gynae nurse to tell me over the phone ahead of my consultant appt Tuesday. She said the cancer was 4mm x 2mm (or the other way round) and had been completely removed by the lletz procedure I had 6 weeks ago. She mentioned internal radiotherapy to prevent it coming back 

Has anyone else had a similar diagnosis and any idea what that means from a staging point of view, apparently no scans have been requested at the moment. I think at this moment in time I want the whole lot removed to reduce any risk of recurrence but also understand the implications of major surgery. I hate the fact I have this disease and that it's going to hang over me forever!

Any feedback or comments appreciated

Hope everyone is doing well with treatments recovery

Anne xx

Hi Anne, so sorry to hear your diagnosis. 

 

I was in a similar situation in May this year when I was first diagnosed. Similarly they thought mine was all removed at LLETZ too, however the CIN3 surrounding the cancer didnt have clear margins so they done a repeat LLETZ, which came back clear. I'm not sure about the radiotherapy side of things as I didnt require this. And I was sent for an MRI around 3weeks after diagnosis. Hope that's a bit helpful! 

 

Hugs xxx

I am really surprised that it has taken that long to get back to you with that result. You must be so cross. 

I have been diagnosed stage 1b now, and although they have clear margins, because is it cgin they want to do a hysterectomy to be sure. 

I too feel like I want it all out! But slightly worried about recovery as my children have special needs. 

Will you have scans now? You will probably find out a lot more on Tuesday.

big hugs, Molly xxxxxx

What have they said to you for long term monitoring?

Anne x

Hi Molly,

sorry you also find yourself in this cancer nightmare! I too have cgin, so I think I will be asking for hysterectomy anyway. I think recovery depends in the type of surgery you need, have they said anything to you? The gynae nurse said to me that I might not need a scan but I will be asking for one for piece of mind. Any ache and pain I get now I'm convinced it's bloody spread although I know this is probably unlikely. Did they give you any indication to size of the cancer

Anne xx

I have to have 4-6monthly colposcopys for two years, then yearly for 3 years, then all being well back to usual 3yearly smears. I have my first follow up in a few weeks, so will c what is going on then. 

 

The waiting between appointments  was what I found hardest throughout as you just want it over with. Xx

Hi Anne,

I'm sorry you have had this dreadful long wait for your results. At the top left of this screen you will find a tab entitled "Cervical cancer and abnormalities" and in there is a very helpful guide to staging. If yours was indeed 4mm x 2mm it's tiny, please don't worry yourself into a frenzy over this. And it won't hang over you 'forever', if they have got rid of it and it doesn't return in five years you are as fit and well as everybody who doesn't have it and never has. Well, at least that's my understanding.

Write yourself a list of questions you want to ask at your consultant appointment on Tuesday. It's very easy to forget to ask things when you are being told things that appear frightening, and if possible, take a good friend with you who might be able to ask the questions on your behalf in case you find that your mind goes blank.

Be lucky

Tivoli

Hi

i think he said it was 2mm. I think that's the depth of the invasion. It was restaged because it was visible to the eye and 1a1 is only seen under microscope. There has been so much to take in! I have no idea what sort of hysterectomy yet, I will be sent an appointment with a new consultant now for after my scans and he will discuss all that with me. Want it all to be over now!!! I have a refrain of 'I have cancer' going round in my head, I think it hasn't really sunk in yet.

I second what Tivoli says about writing down questions and bringing someone with you to take in the bits that your stressed brain will forget about.

love, Molly xx

Hi ladies,

thank you so much for your replies, any information helps with trying to get my head round this whole thing. My other half is coming with me on Tuesday but while I've always known it would end up with a cancer diagnosis he has completely blanked the idea of it happening so think he is struggling now. I have taken your advice and I am writing a list of questions, I've even split them into sections (quite impressed with myself!!)

Trying to find any decent information on cgin and adenocarcinoma is proving difficult, think I need to stop googling now though as keep looking at survival rates and scaring myself silly! I've been fairly calm since i was told on Friday but don't know if that's because I already had an idea or because it's not fully sank in yet. I have the odd wobble when I look at my 3 year old and imagine him without a mommy but thankfully these moments are few at the moment

Keep up the fight girls xx