Clear Cell Adenocarcinoma

Hi Suki Silver and a warm welcome to our spot in the Online Community. Here you'll find a group of supportive ladies who've all been in the same position as you but, between us, we've massed loads of experience which we're happy to share.

I'm attaching a link to Womb cancer for you to look at. - you'll see stage 2b means the cancer has spread outside of the uterus to the cervix and grade 2 means the cells look more abnormal and a slightly faster growing. Therefore radiotherapy is normally offered in the first instance, perhaps chemotherapy later.

I myself was stage 1b/grade 3 serous adenocarcinoma - I'm not sure if it was clear cell.

It’s always helpful to others if you write a little something (or a lot) about yourself and how you came to find yourself here. Why not take a few moments to update your profile. It's always helpful for us to read if we want to ask you questions and you also won't end up repeating yourself. You can enter it into your profile (click on your username and select “Profile”) . You can amend or update it at any time. If you’re not sure what to write, just click on my username.

If you want to ask any of us any questions please come back and do so. There's always someone around and we can offer a shoulder to cry on, a hand to hold or listen to a rant, we’re here for you.

It might also be a good idea to download this booklet Understanding Womb (Endometrial) Cancer. I found it really informative and helpful.

Click on the link I’ve created to find out more information covering diagnosis and treatments for Womb cancer.

You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

There is also an Ask an Expert section, but you should allow two to three working days for replies from our expert team.

Sending you welcoming hugs, Barb xx 

Hi Suki Silver and welcome to the group.

Clear cell adenocarcinoma is indeed a rare form of the disease, so it may be that no-one has any current experience of this or the usual treatment. 

In addition to the Macmillan support line and “ask an expert” within the community which Barb has signposted for you, there is a charity called The Eve Appeal which a gynaecological cancer charity where you may be able to find out further info and advice. I know there is a cancer information nurse there who can respond to questions etc. 

I think it’s important to know and understand the reasons behind a particular course of treatment, so in addition to your own team being able to explain the rationale for treatment decisions to you, you will hopefully be able to use additional resources to find out more.

Sarah xx

Hi Suki silver,

Welcome to the group, even if the ladies here are not the same type as you, you will find a lot of support. Everyone is very kind and helpful and the Champions are an excellent resource of information.

It's a lot to get your head around at first and your CNS will be a good point of contact for your questions. Best wishes for your treatment,

A x

Hi Suki Silver, I’ve been told I’ve got a rare and aggressive carcoma, they’ve sent it off for verification, so it might be the same as yours. I’ve got to have a CT asap, and I was told that if it’s spread I won’t get a hysterectomy which was a horrible shock, as if womb cancer isn’t bad enough. They did say though, if that was the case I could have anything else that might help because (apart from cancer!) I haven’t got anything else..small comfort! Julia xx

Thank you for your welcoming words, this is the first opportunity I've had to speak to anyone. I don't know what a CNS is, so I'm guessing I don't have one! I haven't had any appointments or information since my gynaecologist told me my biopsy came back as clear cell adenocarcinoma and it was rare, and I'd be having 5 weeks of radiotherapy in Edinburgh (that's about a 4 hours away from me in Galway) I looked up radiology online and apparently it's daily, I'm not looking forward to 8 hours a day in the car! I hope it's not painful

That's so worrying  :( Maybe that's why I'm not having a hysterectomy too, because it's spread into my cervix. It's good news you haven't got anything else but it's VERY small comfort!! Suki xxx

Hi Suki Silver, regarding the long round-trips for radiotherapy - ask at the hospital, and ask Macmillan, and the nearest Maggie's Centre, if there is any help available with temporary accommodation near the hospital at that time.

I looked into that, apparently there used to be temporary accommodation, but there isn't any more, and the hotels near the hospital were a tad pricey! It looks like I'll have to take the train now anyway (the person who was going to drive me isn't going to be able to), which will definitely be cheaper, if I can get a disabled railcard.

Hi Suki Silver, I don’t know if it’s different in Scotland, but in England people travelling very long distances for treatment (radio or chemo) have their hotel booking paid for by the hospital. I had my radio at Southampton and met patients who had travelled from the Isle of Wight and Channel Islands, all staying at the Jury’s Inn. Their ferry/air fares were paid fir as well. You will likely have an appointment with an oncologist and a planning scan first I suggest you ask your consultant’s secretary asap for the contact details for your CNS as then you can access more support.

Thank you, that sounds very encouraging!! I'll see if I can find some contact details, or the hospital should know who my consultant is (I wasn't seen by the consultant but by one of the doctors in the department, although I know there is a consultant) 

Can I just ask a really silly question, what is a CNS?