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.

Waiting for results

iamok
Posted by

Hi 

I was diagnosed with endometrial cancer at the end of May.  I am waiting for the results of my CT scan that I had 2 weeks ago.  I am keen to know about the timescales for results, next steps etc. My nurse told me that I should be discussed this week but there is a backlog of scans. I am assuming that I will be getting a hysterectomy and I am trying to plan my life around all this. Does anyone have experience of approx. timescales for all this. This waiting game isn't easy. xx

Arla
Posted by

Hey iamok,

 I was diagnosed in June 2017 and had my operation in the august. I think the national target is that treatment (generally a hysterectomy for womb cancer) should be within 62 days. If they discuss you this week it should hopefully not be too long until you have a plan and some timescales. My team were really good at moving things along for me, keep in touch with your nurse, I'm sure they are putting as much pressure on as they can to get your scan results back (I had an MRI scan and the technician told me they had emails about me to get my results in quickly and fast tracked so they could fit me in for my op). 

Cancer research U.K. Show the targets for different areas at: https://www.cancerresearchuk.org/sites/default/files/cs_report_cwt.pdf 

They also a page about waiting https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/access-to-treatment/waiting-times-after-diagnosis 

waiting isn't easy, we are all here to wait with you, if you have any questions, fire away, if you are thinking it we will probably have thought or worried about it too 

lots of love

xxx

iamok
Posted by

Hi Arla

Thanks for information. My diagnosis was a complete shock to me. Hopefully I will find out this week. Fingers crossed. 

Can I ask a couple of questions - why do some people get a MRI and others a CT scan? how long was your recovery?

thanks

xx

Arla
Posted by

Hi iamok,

i think the ct and MRI scan is just down to the individual hospitals equipment, availability and area guidelines, I can't see any other reason for the difference, they give roughly the same information, again I'm not a medic, that's just my understanding of things, lots of the group have had ct rather than MRI scans, I was treated at my local hospital so I imagine they are behind the times lol.

I had open surgery and Recovery wise I was up showered and dressed myself the morning after my operation, I was shocked that I could do that, my movement was restricted and I had to avoid lifting and too much bending but other than that I could walk about and fetch a drink or snack from then on. I was driving our automatic car after three weeks (I couldn't have done the manual one until six) and was meeting friends for lunch every couple of days. I felt stepped changes at one week, three weeks, six weeks, three months, etc. I went back to my desk job at three months but if I'd really had to I could have gone back sooner, I'm glad I didn't have to. 

I read here that it can take one to two years to heal properly on the inside and that matches what I felt but I really wasn't too restricted after the first three months, if you listen to your body and have a cautious approach you will know what you can and can't do, I could feel pulling and got tired when things got too much.

Have you gone through menopause yet? I was pre menopause so had surgical menopause.

xxx

NannyAnny
Posted by

Hi iamok,

Sorry you find yourself here, but its a good place to wait!!

I had keyhole surgery, which was amazing. Only three tiny holes to be seen, and pain no worse than a bad period!!! I think its a quicker recovery time, although you still have to be careful about not lifting. I took things slowly, walked every day, and was about right again after 3 months. I was 72 at the time, so no problems with a menopause!!!

I had both scans, on the same day as it happens, and they picked up another potential problem! It was just like having an MOT!!!   XXXXX 

Little lamb
Posted by

Hi iamok, I had both Ct and MRI scans and the wait ranges from four to six weeks for the results although there is a backlog for most things as you say. The reason I had the MRI was because I had two failed hysteroscopies, one under general anaesthetic and they couldn't get good enough samples. That showed a suspicious mass that looked very much like cancer but they called me in to tell me this then gave me a Ct scan there And then because it would apparently show the positioning or something in greater detail. I then had a radical hysterectomy,tubes,ovaries,cervix and womb taken with washing and a biopsy of the omentum by robotic and open surgery as the womb was too bulky to get out and was filled with nasty neurotic material which was discharging. Once they have all the results back they discuss it at an MDT meeting then decide on a treatment plan for you. As arla says it is around 62 days but mine was slightly over this time..too many failed procedures i think! Waiting is awful especially when you know what's got to be done and just want it gone but we wait with you. By the way, if any bits of this post don't make sense this thing has a mind of its own this morning and is changing things that I write into ridiculous parodies! I have already had to change a womb washroom and neurotic broadcasting which we don't do although I would be interested to see what a womb washroom looked like! Anyway my dear I hope you aren't waiting too long for your results and remembered are all here for you , no questions too stupid or too personal. Ask and it will be told like it is. God bless. Love lamb.xx

Fairycake
Posted by

Hi   A very belated welcome from me too. Waiting for results is never easy and it does make planning anything more difficult. I was diagnosed three years ago and my ct and MRI results both came back within a couple of weeks, though I have to say it felt like a lot longer as I waited. I found that keeping busy helped a lot and as I worked in a very busy school office at the time, that took care of the days. Evenings and nights were the hardest emotionally because that's when the worries would crowd in. I found that walking was good and generally just trying to keep my life as normal as possible - so still planning in the days out, meeting family and friends etc, gave me something pleasant  to focus on as well as good memories to chat about during recuperation. During my recovery from surgery and then on through chemo and radiotherapy rediscovered knitting, which I found occupied both hands and enough of the brain to help keep some of the negative stuff at bay. Three years on from diagnosis, I still knit and find it very therapeutic. Mindfulness techniques, prayer and meditation can help too. The best advice I had came from my specialist nurse who told me not to second guess anything and to try to concentrate on  one day at a time. You've found a safe place here to wait. I know it's hard right now but hope that as you wait you'll have lots of things that brighten your day x

iamok
Posted by

Dear all

Thanks you for all your support and kind words. It really has helped me. Today I got the results from my CT scan and the cancer is confined to the womb - it was such a relief to hear this.  I don't think that you fully appreciate the emotional turmoil that you go through dealing with your diagnosis and waiting for your results. 

I still have a way to go but it looks like I will be going in for a laparoscopic hysterectomy within a month or so. I still have to meet with my consultant to discuss the ins and out but I am feeling much more positive. 

Thank you 

xxx

GBear
Posted by

, having cancer is scary but I know how much relieved I was when it was said to be confined to the womb. So I can see the sense of relief you have, I know you have up coming surgery but you have lots of support and tips from here.

  GBear Xxxx 

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