Question about hysterectomy

Hi B74,

Sorry you find yourself here and at first it is quite bewildering and scarey.

I think they warn you that they might have to cut you depending on what they find. I know they warned me and in the end it was done by keyhole. My cancer cells were grade 2 and I was stage 1A. My staging and grade stayed the same after the operation as before, but I think it can often change. Try not to worry too much. They are very good at sorting you out. I found the best way was to keep too busy to let my mind wander, and that was 6 years ago now!!! xx

Hello B74

I am sorry to hear that you have been diagnosed with womb cancer. It is reassuring that they believe it is contained within your womb and that the CT confirmed this. 

It is always a worrying time when you first have a diagnosis and I found the ladies on here a great support when I was having my surgery and follow up treatments last year. It is natural to have lots of questions and worries so please do not be afraid to reach out for support.

I had grade 3 womb cancer last year and my hysterectomy was done laparoscopically. I did not know what grade I had until the post op pathology came back. In fact grades were not mentioned until then. All I knew was it was a probable stage 1-2 cancer. The post op pathology came back as stage 1b carcinoma sarcoma (grade 3). 

I do not know why the grade would mean it could not be done laparoscopically but I do know they take lots of factors into account and I suppose it could be to gain better access to any lymph nodes? It may be due to there being several solid areas of the cancer?  Have you been given a cancer nurse specialist yet? They would be the best person to ask about this as everyone is different and they will have all your details. If you have a letter from the hospital there may be a contact number or email address that you could use. The other alternative that I did a couple of times was to do an online consultation with my GP, ask him the questions and he was able to find out directly for me. 

I think the main thing is to put your trust in the doctors and that they will decide with you the best way forward with the hysterectomy. They would not suggest the open surgery if they did not think it was needed. There may be a little longer recovery from the open surgery, but the main thing is they will be operating to remove the cancer.

I will pop a link below with some information that I found helpful when I first had my diagnosis. 

Womb cancer booklet | Macmillan Cancer Support

I hope this helps a bit. If you feel like talking it through would help then please do give the Support Line a call. They are lovely on there. The number is below.

Jane

Hi B74, I think it’s pretty standard for all of us who are told our ops will be laparoscopic or robotic that we need to allow for the fact that it may turn into open surgery once they get in there. Mine was predicted grade 1 stage 1A and I was told hopefully laparoscopic but can’t tell for sure till they start the op and see what’s what. First thing I did when I came round from surgery was look down at my tummy to see what I’d had! 

Thank you to everyone for replying. I do have three CNS who job share, I am just not comfortable with talking, I feel too concerned about falling apart (vulnerability is a real issue for me due to CPTSD), typing is easier. 

Hi B74

I can understand preferring not to talk- why not email your CNS instead and ask for reply via email. I agree with the others- it could well be that they are just talking about the possibility and it is something that they say to all ladies at your hospital.  My own consultant did not mention it to me but I suppose from the CT scans etc they have an idea how things may go. 

Hi B74, sorry to hear of your diagnosis. I was diagnosed with endometrial cancer July 2022 and the consultant who did my biopsies suggested that keyhole surgery would be appropriate. However, when I saw the surgeon she advised that, as I had 3 fibroids one of which was cancerous, it would have to be open abdominal surgery. I imagine there are various reasons for deciding on what type of surgery is performed. Hopefully when all your tests have been done the surgeon will be able to make an informed decision. I found my Cancer Nurse Specialists very helpful in answering all my questions and concerns. I tended to e mail them as I found it easier to express myself in that way.