Newly diagnosed and awaiting CT scan

Welcome to the group Tigerlily! I’ve just finished my treatment but I still remember the day I got my diagnosis and the shock, Re timing, it very much depends on your particular hospital. Some of us here have had our operations sooner than others. To give you an idea, this was my timing:

- diagnosis after hysteroscopy 19/11/21

- staging MRI 23/11/21 and results 26/11/21  (note: I think the MRI happened more quickly than many places and the results certainly did)

- pre-assessment for hysterectomy 15/12/21

- meeting with new consultant 31/12/22 (he gave me my operation date)

- hysterectomy 22/1/22 

My original consultant had a long waiting list and also needed an op himself so I was transferred to the new consultant’s list. Had that not harkened and had it not been Christmas, I suspect I’d have been brought in a bit sooner. In which part of June is your son’s wedding and how long would you be away? You may find the timing works out anyway or doesn’t make too much difference but you may want to wait till you’ve had your CT and staging results till you make your decision - unless of course your trip is due in early June and you go before your CT appointment.

Hi Tigerlily

I'm so sorry you've also been diagnosed with womb cancer 

Can I ask if you know what Grade or type of cancer and what stage it is? This could make a difference. 

Mine was Grade 3 Serous (aggressive type) but early stage 1A, so I had hysterescopy 24th November 2021, was called to clinic 14th December and informed of my diagnosis (just said cancer,  didn't tell me it was high grade) Had my total hysterectomy on 25th January 2022. 

Have you mentioned this(wedding)to your Consultant or Specialist Nurse.  I'm sure you may be able to work around that and you wouldn't be able to travel or enjoy the wedding if you just had such a major operation. By the way I thought my wait was long and cancer may spread.  But all my other things they tested omentum and nodes were all clear luckily hadn't spread.  Good luck  xxx

Hi Tigerlily. Sorry you've had this diagnosis and the timing is making you anxious. As Madesp says it will very much depend on your staging and also your postcode lottery. Just so you know mine has been a 9 week wait from diagnosis to hysterectomy. I had my pre-op 3 weeks ago and only found out my date last week. I think anywhere between 6 weeks - 12 weeks seems to be standard for NHS which might work out well for you to enjoy the wedding beforehand?

Hi Tigerlily,

When my husband was diagnosed with throat cancer 14 years ago we had a holiday booked to the Black Forest in Germany. We told the consultant who said the holiday would do us good. They arranged the operation for when we got back. It only delayed things for about a week. Tell them and see what they say.  I can't remember the timings for my operation (coming up to 5 years), but I didn't have to wait long for a date. They slotted me in two weeks earlier as they had a spare slot, then at the last minute I was cancelled as they had an emergency!!! Good luck !!!

Thank you for your reply. They said Stage 1 but never mentioned a grade. I did give them my dates for the wedding. They said that would be discussed at the oncology meeting.

Hi Tigerlily, it’s more usual to be given a probable grade rather than a stage - staging is what the CT or MRI is for. Were you given contact details for your CNS? (Cancer nurse specialist) I’d suggest giving them a call and asking them about the grade as they will have access to your notes. 

Hi Tigerlily and a warm welcome to our spot in the Online Community. Here you'll find a lovely group of supportive ladies who have all been exactly where you find yourself now. Any cancer diagnosis brings all sorts of stress and fears and if anyone can hold your hand and reassure you we will as you’re not alone in this. We're all at the start, in the middle or the end of what can only be described as an emotional roller-coaster ride. 

I'm sure your team will take into account your plans to go to your son's wedding, it's only next month so I'm sure that won't present too much of a problem for them -  It also depends on where you are in the country but as a generalisation the op would be 8 week from diagnosis.

The actual stage and grade won't be finally confirmed until after the op and histology has been concluded. Stage 1 means it's confined to the womb so don't worry yourself too much.

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 invaluable on my journey. 

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

You might also find this link to what to take in my overnight bag useful for when you have surgery.

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