Feeling confused about contradictory results, and MDT feedback

Cervical cancer treatment
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I am not very good at joining in on here, but have been reading people's experiences and it is so helpful to read about other people's journey. I had issues with logging back in, so sorry if anyone replied to me and I didn't respond.

From my earlier post, I mentioned I was diagnosed adenocarcinoma cc in March after a LLETZ for abnormal cells. Was quite the shock as never missed a smear and they have all been clear! (still don't understand how it can have developed into cancer so fast - other than the glandula aspect, I am told this type is rarer than squamous cell?)

Anyway after MRI and CT, the MDT met and I was told end of March that it was contained to womb and smaller than expected - preliminary staging from LLETZ biopsy was 1b2. Now they were thinking 1a2. But some other inflamtation showing in scans. Anyway they wanted to try and remove without surgery - and pathology said they wanted more tissue to examine before deciding if they would do any further treatment. So 2 weeks ago I went in for another LLETZ/Cone biopsy (seemed to be a mix of the 2?!) but was under GA this time. Last week MDT met again and said actually scrap the last info we gave, pathology showing multiple additional glandual abnormalities, and will need surgery. 

However - and this is the frustrating part! - they have said my case is "unique" and they are not clear enough if a hyste with pelvic lymph node removal is enough, or if I need more radical (where they also remove top part of vagina and surrounding tissue etc?!). So they have referred my case off to a specialist in a different region to get a second opinion, before they decide which surgery to do. So - more waiting and not knowing the plan. It is torture not knowing, but I know I am very lucky compared to so many of you. Trying to stay positive.

Just wondered if anyone else had similar experience, or any thoughts? I have been asked to go to meeting with the MDT team on Saturday to discuss (they said not to be concerned, no more bad news, just so I can ask questions and they can explain why they have uncertainly). It is a (very) long week so am trying to distract myself! All your stories are helping with that xxx

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Hi fifer78 I am so sorry to hear you are having such a terrible wait I think this waiting prior to getting a treatment plan is one of the worst bits about a cc diagnosis once you know what is coming it seems a little easier. Yo have something to fight against if you know what I mean. I think it takes longer when things are not so straight forward because they want to be absolutely sure they are giving you the best chance. Good luck and take carex

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Thank you Cherryelm x 

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So sorry to hear you are going through this, like cherryelm  says the waiting is the worst.  I’m afraid I can’t help with similar experiences  But its good they are consulting with another specialist and exploring all options so that they can give you the best treatment.  Hang in there, I hope you get your treatment plan soon and that your meeting on Saturday answers all your questions and concerns x 

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Hi fifer78, I also had adenocarcinoma and had a radical hysterectomy and radiotherapy  and it seems that most ppl with this cancer do have a radical hysterectomy,  my oncologist told me it can be more sneaky than squamous cell cancer and there for they would prefer to take as much as the can to try and prevent a future reaccurance , hope this helps  , melissa x x

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Thanks for replying ladies. 

I actually got called today and it’s really good news. I don’t need the full radical. I’m getting hysterectomy with lymph node extraction on Tuesday so all happening fast. I’ll find out more as I’ve to go for a pre-op assessment tomorrow, but they don’t think I need the extreme type as the cancer is so much earlier than they initially thought. I’m so relieved!

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That's fantastic news for you, the fact you wont be going into early menopause is an added bonus, I wish you all the best of luck , melissa x x