Diagnosed on Wednesday

Hi Seriouly20, welcome to the group. I feel for you for the shock you’ve had and as you seek to process it and let it settle. Before they do a hysterectomy they’re only making a prediction as to what they think is going on, and can’t give a full picture until the post-op histology comes back, but they don’t always make this clear. At the appointment on Tuesday you may see a consultant or a registrar and they will explain what was found - what grade and type - and tell you what treatment is recommended (if any). They may also want to do an MRI or CT scan. If treatment is recommended, then you will likely then be given a separate appointment with an oncologist. One of your CNS may be present or they may ask you if you’d like to see one. 

Hello Seriouly, I’m sorry that they found cancerous cells when you weren’t expecting it, that’s a nasty shock for you. It’s good that you’ve already had the hysterectomy, and you’re not waiting around for that. I would expect on Tuesday that you will see the consultant, and there will also be a MacMillan nurse in attendance for support and to help answer any questions you may have. I don’t think there will be anyone else there - but they will discuss the results with you and start to put together a plan for future treatments. Try not to worry too much, lots of hugs, Julia x

Thank you for replying.  I think I’m worried about walking into a room full of people and it all being a bit to much, so I burst into tear. Silly, I know. Atm I’m carrying on like nothing has happened. Going to work, meeting family for lunch, etc - basically  sticking my head in the sand, 

Seriouly22, we all find our own different ways of coping. I wouldn’t personally think it will be a roomful - one or two perhaps.I’m hoping Cakenport may see this thread as she had a similar experience last year. 

Hi Seriouly22 and thank you MarmiteFan59for the mention. Yes, I had this exact thing happen to me earlier this year. The meeting was very low key, my consultant who performed surgery talked me through and there was a CNS nurse present also. After the meeting with the consultant I was then able to have a private talk with her also (for more practical chat to make sure I understood everything). I was very nervous waiting for this in the waiting room and had made sure to write a list of questions. Not long to wait and I hope they have caught things early. Better out that in, whatever. Let us know how you get on.

Hi I suspect the surgeon said this as the uterus didn't have anything suspicious looking from the outside, they see a lot of different stages of cancer so hopefully he was right to say nothing too worrying but they,  I think they leave the findings to the pathology or histology team who will test everything and only once this is done will they know more. Your hospital team initially may have predicted that hysterectomy would be enough but histology may show that you would benefit from adjuvant treatment to try stop the cancer from recurring? 

At your appointment it will probably be the surgeon or another consultant and a CNS nurse, don't worry if you feel you can't absorb all the information they give you, either way the nurse Normally comes away with you after the appointment and will chat with you about what's been discussed or you could ask permission to record the discussion on your mobile telephone.

You should also get a letter from the hospital afterwards informing you about the appointment and what was discussed or you could ask that this is done so you have it written down for reference. 

Personally I took my daughter with me and she made notes about the conversation and I found this useful as I could not take in everything that was being said, I appreciate that not everyone has this option but if you have a family member or a good friend I would advise you go with someone for company and support.

Hope this helps, please do let us know how you get on and best of luck. Xxx

Thank you Cake and Mad. After worrying myself stupid over the last couple of months, I’d finally started to feel quite positive as the recovery from the hysterectomy was quick and relatively painless. This came as quite a shock. I’m getting questions together and reading up on what the next phase could look like. I’m taking my husband with me, not sure about much help he will be as he gets more emotional than me . 
Thank you all, for your support. I can’t really talk to family or friends as I don’t want to worry them even more xx

Hi again Seriouly, telling friends and family can honestly wait, especially as you won’t really know yet what to tell them. Treatment may or may not be needed, depending on the grade/stage, and I’d suggest it’s best to wait till you know. Having a list of questions is a good idea, though you may find you don’t need them. Could I also gently suggest to you that you’re careful and selective about how/where (even whether) you “read up” on what may happen next. Dr Google is not our friend and should really be struck off! The Macmillan site as a whole is a super resource, and accurate and reliable. And this group itself is well moderated. I’d steer clear of anywhere else really. Please do feel free to ask any questions here but also try not to run ahead (I appreciate that’s easier said than done) but what ifs can drive you crazy and it’s better to try and take things one step at a time. 

Thanks Marmite. I’m going to take your advice and keep off Dr Google and stick with MacMillan. I just want to know what is going on, but realise this make take some time if more tests are needed. Thank you for your support.

Bless you, I feel for you as the time between now and Tuesday may feel like quite an age! I had a bit of a weird time - I was told I had cancer, predicted grade 1 stage 1a, had my hysterectomy and was then told a few cells had been also found on top of my cervix so it was changed to a “technical” stage 2 as there may have been cells also in my lymphatic system (no nodes were sampled during my op so they didn’t know). But not just that - they also found a rare pre cancer in my fallopian tubes that if it had remained undetected would have led to aggressive ovarian cancer. So my situation was the other way round, but still a shock nonetheless!