Very Confused!

Hi all, I have just joined this site! I am 29 yrs old diagnosed with cc a few weeks ago. I met with my consultant today and feel more confused thatn ever!!! I was under the impression I was having radical hysterectomy but now she is saying it might be best to do chemo and radiation as I have had two c-sections already. I am desperate for straight answers and a plan the whole thing just confuses me, She said I have stage 2 caqncer, I think it's 2A but i'm not even sure about that. I have been super positive up until now but to be honest I feel a bit flat tonight! Any responses of similar happenings gratefully received x x x

Hi Kate, 

There are very clear international guidelines on which treatment you should receive. These depend on which stage your cancer is at and which type of tumour it is (squamous cell carcinoma, adenocarcinoma or clear cell carcinoma). I am not a doctor or a medical scientist but, as far as I understand it, the treatment that is most suitable and effective for you has little to do with whether or not you've had previous c-sections, and unless they're giving you a very good reason for it, they should not be doing an open procedure anyway - they should either be doing it vaginally or laparoscopically. Your treatment - whatever that is going to be - also needs to start within 49 days of diagnosis. Always bear in mind that the rules are different when it comes to treating cancer and how long the waiting lists are for that particular hospital or who they have available etc.. simply doesn't come into it - there are certain things that they just HAVE to do. 

Have you had an MRI? And have you been given a specialist gynae nurse you can phone? If you've had an MRI, then you should have been staged. I would ring your cancer nurse and ask her what your staging is and which kind of tumour you've got (see the bit I've written in the above paragraph). Also ask who your oncologist is - this is a different person from your consultant. I'm sure your consultant is a lovely person and is no doubt very knowledgable, but being a gynaecologist specialising in oncology is different from being an actual oncologist. You need to know what the oncologist thinks, because they are the micro-speciaists on this matter and will also has to be present when you're having your surgery. Also ask your cancer nurse what was discussed in the MDT (multi-disciplinary team) meeting that made them change their mind about treatment. 

Sorry - I don't mean to bombard you, but being uncertain about things is horrible and I really feel for you. There are certain things that they should know by now if it's a few weeks since you've been diagnosed, and you are entitled to know the answers to these things. It doesn't hurt to be a bit pushy with them - by which I don't mean be rude with them - you can be firm yet polite! 

I'll be thinking of you. Let us know how you get on.

Annabel. x

Hi Annabel,

Thank you so much for your reply, I really appreciate it. I actually just spoke with a Mcmillan nurse who I thought was really lovely and explained things a bit better.  I have adenocarcinoma stage 2A and the tumour is around 1cm in size so the nurse told me the caught it early. I am being discussed a MDT tomorrow and the nurse said she would call me tomorrow with info which is rally reassuring because the consultant did not give me a time frame. It has been 23 days sice diagnosis which feels a lot longer! They are still saying that due to 2 C-Sections surgery may be tricky and chemo/radiotherapy is still an option. They have said that surgery is preferable because it would leve my ovarie's intact and they think I am too young for menapause! Sometimes I guess it just feels like you are not in the decision making process at all and have no say in how you feel. I still think I don't know enough about both options to know which is better for me! I have has MRI and CT done also. Thank you so much for your post, so kind of you to take the time and there was lots of things I didn't know before!!! Will keep you posted x x

Hi Kate, 

Stage 2a is the only stage where it really is a case of either/or in terms of surgery or chemoradiation. With most stages, it's very clearly one or the other recommended, but 2a can be either/or and this really depends on where exactly in the cervix your tumour is and the direction in which there is any spread, as well as unique features of the patient. I can understand you feeling like you don't know enough to make decisions - it's easy to feel overwhelmed at this time and it's very difficult to feel able to make decisions and, like you say, you feel a bit like you're not involved in the decision-making anyway! I think you're right, that surgery is preferable (apart from anything else, this means you still have chemoradiation as an option later on) but, at the end of the day, they will recommend treatment based on what they think will be the safest outcome for you. I know that everything else, like menopause etc.. is very difficult, but all that matters at the end of the day is that your future is protected. 

I know what you mean about the time - when you've been diagnosed, every day that goes by without something obvious happening feels like an age, but on the other hand, everything is a complete whirlwind as well!! It's all very odd! 

Know that I'm thinking about you - do keep me updated if you would like to. 

Annabel. x

I had stage 2B in 2003 and they said they no point in a hysterectomy as would not get a clear margin of tissue as my tumour was 6cm in diameter.  This really scared me but the oncologist reassured me the treatment of combined radiotherapy and chemo was very good. Had weekly Chemo and daily radiotherapy which was ok. Felt quite hyper actually as they gave me steroids in the intravenous drip before the chemo whch made me feel like I had bags of energy.  It was mid Dec and the chemo unit were putting up Christmas decorations the first day of my chemo and I recall thinking I had a choice to either feel sorry for myself or to be focused on being positive as plenty of people worse off than me.  Had follow up MRI shortly after treatment finished and the scan was clear. 5 years of check ups followed that go from every 3 months to 6 months to yearly they discharged me. Hope this helps you not to worry too much if they decide not to operate it will be about whats best for you, take care xx