In a state of limbo

Hi Shezza1225,

I thought id respond as my symptoms seemed similar to yours, as i was waiting for my MDT meeting following PET and MRI etc i ended up getting admitted to hospital due to excessive bloodloss (id already over the previous 3 weeks been passing big blood clots, some the size of the palm of my hand. This night i had blood gushing and it just would not stop, i remember feeling quite detached but it was really frightening for my daughter and an ambulance was called etc. The hospital had already put me on tranexamic acid to help stop clots, and when i was taken via ambulance i was given more intravenously. Have you been prescribed anything for the clots/blood loss? You will have treatment soon so my advice is to let your hospital know if they dont already, you will want to get your bleeding under control as much as possible in preperation and these tablets helped. My stage was 2b, i was treated to cure and had 25 external radiotherapy, 5 chemo and 4 nights inpatient brachy, that was December 23 and im still no evidence of disease x wishing you the very best for the MDT and your treatment x

Hi mochimoo,

Thank you for your response, its goodto hear im not alone in this.  I went to A&E last week as bleeding really heavy and was informed they couldn't prescribe anything for the bleeding as I had a heart attack last year and am on blood thinners, they said this could be why the bleeding so heavy.

Since early hours of this morning feels like a tap has been turned on

So pleased for you that you have NEOD xx

Hi Shezza1225 and welcome to our group.

A cancer diagnosis is a lot to take in when you first hear those words, isn’t it? I’m sorry to read you’ve had this so recently-it’s a lot to take in at the start, Things look to be moving quickly but I know it won’t feel like that for you at the minute where every day seems endless. 

The different scans will all add to the picture they’re building up to decide the best treatment plan for you. It’s important to know the exact position and size of the cancer, which the mri will show, and then determine if there is any spread of the cancer outside the cervix which the pet ct will pick up. 

Hopefully the stage will be confirmed as stage 3, which is curative but I’ve found doctors are cautious with giving more information until they have everything they need for final confirmation. Once the pet ct scan results are available, all of your results will be discussed at an MDT meeting. This is normally a weekly meeting where all the specialists involved in your care-such as radiologists, oncologist and cancer nurses discussed everyone’s case and come to a decision on individual treatment plans.

Normally you would then have an appointment with your consultant to discuss this and go through everything. It seems like a lot of waiting, and waiting is always tough, but waiting is unfortunately a feature of cancer-waiting for a plan, waiting for treatment to start and then waiting for further scans and results to see how treatment has gone. 

I’n not sure how old you are, but I was post menopausal when I started to have very heavy bleeding and a lot of pain-it was horrible and very scary. I had this for far too long before seeing a doctor, but once I was diagnosed and started treatment, my bleeding stopped. It never happened again.

You've come to the right place to get support from those of us who have been through this and understand how you’ll be feeling. It’s hard for families when a loved one has a cancer diagnosis and as mums we usually want to protect our children and make everything all right. You don’t always need to be strong though-your emotions will likely be up and down and you’re frightened.

Keep posting here and we’ll do our best to help. My cancer was stage 2b at diagnosis and that was more than 7 years ago. It did recur, but last week I passed the sixth anniversary of the surgery I was able to have to deal with it. My consultant/surgeon considers me cured.

I hope you’ll get your results and plan soon, and everything can get going. We have lots of experience in the group of different treatments, so feel free to ask any questions and we’ll be happy to share with you.

Sarah xx