Womb (uterus) cancer

A place for people affected by womb cancer (also known as uterus or endometrial cancer) to support one another, ask questions, and share their experiences.

Anxious and Confused

Nina5252
Posted by

I have posted on here before when I received my diagnosis of Endometrial Cancer Grade 1 (Not staged yet) CT shows it is in the endometrium and the muscle. Has anyone ever asked the question , how long does it take to grow? I was supposed to have surgery this Saturday (Waiting List Initiative) but the anaesthetist has asked for me to have the surgery weekday as not enough cover at the weekend. This has pushed my surgery to the 12th July (6 days later). 

I am seeing the surgeon today to discuss the operation. I want to ask him if I can have Progesterone until next week in the hope it will have a positive effect on the cancer until the surgery. 

I just wish this was over and done with as I am emotionally spent. Also I am worried about any spread on removal, as I am having a radical hysterectomy, so Key Hole and Vaginal.

Thank You

Nina

Fairycake
Posted by

Hi @Nina5252 Gentle hugs coming your way. The whole diagnosis process really is quite a scary time so it's no wonder you're feeling so anxious. I never asked the question about growth but I have read on here somewhere that womb cancer is generally slow growing. If it helps, my experience of delay to diagnosis and surgery was that I had an initial hysteroscopy under general anaesthetic which resulted in two rare complications which necessitated six weeks healing and treatment. I had the repeat procedure and then had 3 weeks wait for results, then should have had the hysterectomy 4 weeks later. The date fell on what was to be my daughters engagement party. My CNS was lovely, spoke to the surgeon and he happily agreed that another 4 days wouldn't be detrimental to the outcome. So all in all I was around 13/14 weeks from initial diagnostic procedure to actual surgery. 

Please try not to worry too much about the op itself. I was petrified, I admit, but I needn't have been. I had total hysterectomy plus removal of omentum  and lymphnode sampling via vertical incision. I was well looked after throughout and afterwards wasn't in nearly as much pain as I expected - after an initial dose of morphine I managed on paracetamol and ibuprofen. Follow all the rules they give you and hopefully your re overly will go well.

Sending you lots of good wishes - you can do this! x

Nina5252
Posted by

Hi Fairycake

Thank You for taking the time to reply. This is helpful, I just feel on a roller coaster and want off. I now it all takes time, 

Thank You

Nina x

Nina5252
Posted by

I will let you know when I see the surgeon today. x

Little lamb
Posted by

Hi nina5252, welcome back again. No, I didn't ask how quickly the cancer would grow either (I didn't think of that question!) But stage one is usually slow growing and if it hasn't gone outside the womb chances are that they will get it all out anyway with surgery. The grading is done when they send everything off to the lab to be analysed. I had a radical hysterectomy at the beginning of may. It was originally meant to be by robotic surgery but as the womb was big and bulky and full of necrotic material that was discharging they got the ovaries,and tubes out robotically but cut me horizontally along my Caesarean scar to remove the womb and cervix. Like you I was scared that something would escape and be left behind but they did a biopsy of the omentum and peritoneal washing as well and it came back as stage 1 grade 2. Surgery had removed it all and no further treatment was needed.I did enquire about a course of radiotherapy as a follow up as one of my friends said it would be good to have as a sort of safeguard to make sure everything was exterminated ( sounds like the domestic ad years ago or the daleks!)  But as you can only receive radiotherapy in this area once that was not an option for me God forbid it rears it's ugly little head again I don't want to limit my treatment. And there's the cost of course. So the surgery wasn't so bad, like you I wanted it gone there and then and as fairycake said after the original shot of morphine they usually put you on paracetamol,sometimes with added codeine but cue constipation, and ibuprofen if you can tolerate it. That helps the swelling go down. So hope the surgeons meeting goes ok this afternoon and prior to your operation come back here because we've got lists of stuff that will help and plenty of tips.( We don't provide hospital bag packing service which would be nice so I'm afraid you have to do that bit yourself!) God bless hou. Love lamb xx

Arla
Posted by

Hi Nina,

How did your appointment gp?

xxx

Nina5252
Posted by

Hi Arla

It went well (Ithink) I took my sister with me. The suregeon was lovely, but the computer system was down. They did have my biopsy results, which was originally given to me by the first consultant I saw. 

I am having a Radical Hysterectomy with Abdominal Wash. All will be sent to Histology, so he said to me he couldnt see the CT scan as computer was down. I said "Oh I can tell you what it is as the Consultant told me " I said I was told it was in the endometrium and in the muscle of the womb. He looked at me really confused, then he asked me my name and date of birth. He siad yes we have the smae person, he then said the scan said it was in the Endometrium with no involvement in the muscle of the womb. He said it is not counted as a mass if below 2cm and it did not show on the scan as a mass. 

I was so confused as I said I was told different. I came away tho grateful that it may not be as bad as originally thought, but I have also left a message with my CNS to find out what was said at original consultation.

Nina x

Arla
Posted by

Hi Nina,

i was stage 1a, grade 1, my tumour was something like 7cm x 5cm. I got my diagnosis in June and my surgery in august (I know you were worrying about the wait, they let me go on holiday before my op and were lovely and fit everything around my trip. 

Its a good idea doing a check with your CNS, she should keep you right. We've lots of tips for preparing for the op when you are ready for them, just practical hints and things we wish we'd known to prepare for.

i had tubes, cervix, ovaries and womb out and had an abdominal wash too, you should confirm whether they are taking your whole cervix or not, if they keep part of it you still need to attend smear tests, if they take it all you don't.  Have you been through menopause yet? 

Xxx

Fairycake
Posted by

Hello I'm sorry to read that the computer system was down and the consultant couldn't see your ct report. I think you're doing the right thing asking your nurse to double check what was said. Sorry you e had such a frustrating time but hopefully she'll ring you back soon and hopefully it will be good news. x

Nina5252
Posted by

Hi

They are taking all the cervix away...I am going through menopause just now. X

oldady
Posted by

Hi ,

That all sounds like good news for you but I can understand you feeling a bit confused by the different information!  As a matter of interest did the surgeon definitely confirm you would be having a radical hysterectomy rather a total hysterectomy?  If it isn't really a mass at all perhaps you will only need the total op.  .Another question to ask perhaps.

Good Luck  - at least you haven't too long to wait now.   . 

XXXX

Anne

(Class of 2015!)

Arla
Posted by

Hopefully the surgical menopause won't be too bad, you might not even get it, that's a huge plus! 

Xx

Nina5252
Posted by

Hi Anne

It will be womb, tubes, ovaries and cervix