newbie

Hi, 

Sorry about your diagnosis, I found it helpful to have all the information available before telling people. That way if there were questions, which there will be, you're in a good position to give the answers. 

I hope your pet goes smoothly tomorrow. Jeep us updated .

Thank you XXHHXX

I very much appreciate the advice. in these scary times xx

Hi Winner (Jane) and welcome to our group.

When you’re newly diagnosed, it’s hard enough getting your own head round it all as everything is so much to take in.

My daughters are adults, but I waited until I knew the staging of my cancer and the treatment plan so that I could tell them I was being treated with curative intent, and that I felt very positive about it all. They told me much later how much this helped them come to terms with things and feel more reassured.

If you are to have a pet scan, it will be a little wait for the results from that, but hopefully once they are in you’ll get your treatment plan put in place. I know it’s a very scary time when you’re first diagnosed, but having the treatment plan sorted out makes most of us feel better in terms of being able to get on with things and focus. It’s hard when you don’t yet have all the information you need.

I found having a petscan easier than an mri, but there’s a bit of sitting around before the scan while you wait for the radioactive tracer (given through a cannula) to go round your body. 

I hope it goes smoothly for tomorrow, and you don’t have long to wait to find out more. We’ve had experience in the group of various treatments for cervical cancer, so please keep us posted and we’ll be happy to help support you through this. 

Sarah xx

Thank you Sarah. 

Yes it is hard getting your own head around the whole situation, its constantly there. iv been trying to do brain training therapy on wellness, and Iv found its helping me massively to help keep my calm when im going into melt down.

it makes sense to me what you said about when you told your daughters, as you do want to reassure them that you have a plan and that you are going to fight it, so hopefully I will know more before he returns home. I just hate the fact that every time he's asking me if im ok, that im lying to him. But at the same time im doing it with good intent.

yes the waiting for results is also hard, not feeling in control of things, very difficult. Im also glad you told me about the injection for the PAT scan, im ok with a cannula going in. just don't like injection into the mussels. lol how mad is that.

I was reading a bit about the size and stages, my surgeon said mine was about 6x4 cm now that seems big to me, do you know if that means its more advanced?

I thank you kindly for your response.

Jane xx    

Hi Jane

I know it’s tempting to try and look at things like staging, but size doesn’t always mean it is more advanced, so it can lead you down all sorts of rabbit holes. My tumour was 3.8cm and I was stage 2b, a friend diagnosed just before me had a 7cm tumour and was also stage 2b. Mine was described as “locally advanced” because of its position and the fact that it was growing into the vaginal wall. I’ve known ladies with tumours larger than mine with a lower staging, so it’s hard for us to guess, and we may well not be right! 

There are a lot of factors to take into account to establish the stage, and hence how advanced the cancer is, and that will ultimately determine the treatment plan-whether surgery is possible, or whether chemotherapy and radiotherapy is required. It’s best to wait till all your results are available before thinking too far ahead. Try not to Google when you are new to all of this, as you may not interpret things correctly and it can make you more anxious. I never used Google, but relied on my consultant to tell me what I needed to know.

I don’t really think of it as lying to your son at all, and I didn’t think I was lying to my daughters when I knew some things but not everything. It’s just a desire to protect them until you have the full story-at the moment you wouldn’t be able to answer any questions as you don’t know your plan yet. You’re just avoiding worrying him unnecessarily right now, and that’s ok in my world! 

Feeling out of control is one of the most common feelings we have, so it’s a good idea to use well-being apps to try and calm our racing minds. I did that too-still do in times of stress! It was helpful during treatment too, and when I was waiting for results. You’ll need to get used to waiting-there’s a lot of that in a cancer diagnosis and treatment! 

Keep posting with any questions that pop into your head, and use the group to share any worries and concerns. Those of us who have been through this know exactly how it feels so we understand how hard it is, especially at the start.

Sarah xx

Hi Winner 

I’m sorry you are going through this too. It is an extremely difficult time when you first get diagnosed. It takes some time to have all the tests and find out what’s next. I was never sure who to tell and when. I knew I needed some support so I did tell some family and friends early on. But I did wait until I knew my initial staging before telling others so I could at least tell them how I would tackle it. My children are young so I told them a bit about what was happening but not the whole story. 

It’s good that you have your son home next week. It is hard telling family but it’s good to have their support. Hopefully you will have more info by then toox

Thankyou may2

Must be even harder when you have younger children. im sorry you are also going through it x yes its good to have support from friends and family, but i also feel nobody really knows what you are going through until it happens to you, so i thank you for your support too x 

oh thank you Sarah, that was very helpful information, makes me feel more reassured, I have not googled anything as I know it would blow my mind, it was just from reading the pamphlet in the Macmillan pack. anyway really appreciate you taking the time to help. may I ask how long you have been going through this? and how you are doing now? if that's to personal I understand. x 

Hi Jane

If you click on my name, you can read my story, but my first diagnosis was just over 5 years ago in September 2018. Once you have your treatment plan, you may want to add details to your profile too as it helps others know where you’re at. 

My story is quite a dramatic one in some ways as I was unfortunate in having a recurrence soon after treatment ended, but please don’t let it alarm you. I’m am not typical! And I’m doing fine now, thank you. 

Sarah xx

WOW Sarah, you are brave, im so sorry you had to go through all of that. but very happy that you still here and even more so helping people like me out. im so scared of everything, I cant even go to the dentist. I run from it all.

I will try to do the profile thing im really not that savvy on the internet took me a couple of hours to get to write on here lol. but again thank you for being here. x