Upcoming hysterectomy

Are experiences are so similar. 

What grade and stage were you given and did it change after your op? and are having any further treatments

No I’ve not packed yet, I’ve bought a couple of items of nightwear and have thought about a few things to take. 

I’ve been thinking more about food some batch cooking when I get home.

im trying to keep really busy between now and Tuesday to try and keep my mind occupied. 

I was predicted grade 1 stage 1, but it changed to stage 2 post histology and I had radiotherapy and brachytherapy finishing in May 2022. I’ll try and find a link to the overnight bag thread - it can make all the difference having some extra things with you. 

Here you are!  community.macmillan.org.uk/.../top-tips-for-packing-for-a-hysterectomy

Does stage 2 mean it had gone further into the muscle? Was it a full hysterectomy you had
I gather you still have regular check ups now, how long does this continue to happen. 

thanks for the tips for packing, few things on there I wouldn’t have thought of 

Hi again, no, stage 2 means it has spread to the cervix. I only had a tiny polyp just above the cervix (removed at hysteroscopy and found the be cancerous) but a few stray cancerous cells were found on top of the cervix post histology (plus extremely rare precancerous “stics” in my fallopian tubes which would have led to high grade ovarian cancer). So basically being diagnosed with endometrial cancer saved my life. And yes everything out - uterus, ovaries, ovaries - I just call it a hysterectomy to save typing out the full title. I had three monthly check ups for a year, then they wanted to change me to patient led follow ups, but I requested actual check ups to continue so they were happy to do so. I carried on having 3 monthly checks a couple of times and then asked for it to go to 6 monthly, and thats what I’m on at the moment.

Hi again, 

please let me know if I’m asking too many questions or you don’t feel comfortable answering these. 

Did you have an MRI scan pre op, I’m a bit unsure why they provisionally stage you pre histology when there is a chance of it being changed. 

it must have been a scary time waiting for the histology report to come back. Did this come directly to you or via an appointment with your consultant. 

i think the waiting is horrendous. You wait for the biopsy results then the MRI, then the histology and no doubt the waiting between your 3 monthly appointments was stressful. 

Hi Malaseb. I had the same operation as you at the end of February. I too felt really well beforehand and had no symptoms. I almost didn’t go to the doctors as i had only two very, very slight bleeds a week apart and none after that, but am so glad that I did. My grading before my operation was 1a stage 1 too and has been confirmed as such after the operation. On the day all the staff at my hospital were really reassuring even the receptionist who found us all waiting for him when he arrived at 7:00am introduced himself and told us what would happen next.   The anaesthetist talked to me about where I lived and we found that we lived in the same area and knew the same coffee shops and the next thing I knew I was waking up in recovery. I was very fortunate as I was first on the list (that never happens to me) so I didn‘t have to wait too long before walking down to the theatre. I have had very little pain to be honest and have not felt too washed out by the anaesthetic which I did the last time I had an operation (over thirty years ago). Everyone deals with things like this in their own way and whilst my original diagnosis was not what I was expecting at all (and the ultrasound gave a very misleading and much more concerning picture) I tried to focus on it being a good thing that it had been found early. Like you I prepared for coming out of hospital (I stayed in just one night) which I think helped with dealing with the unknown.  

I saw one of the consultants last week and was told I would need no further treatment  just regular follow ups over the next five years  However yesterday I was sent an appointment for a consultation in April at the specialist cancer centre which put me into a bit of a tail spin.  I managed to speak to both my CNS and a CNS at the centre who confirmed that my grading remains the same and that this was to discuss the offer of external radiography.  

I hope all goes well with your operation next week and that you too have a good recovery. 

Hi again Malaseb, ask away! For me I found being open and honest about my cancer experience really helped me deal with the whole thing and I’m more than happy to answer any questions even personal ones. 
Yes I had a staging MRI and also a chest X Ray pre op. It seems that for the vast majority of women things stay the same post histology. I think they do it to give an idea of the urgency and also to check which kind of op would need to be done and how complicated it might be, whether it would require lymph node sampling etc. But they can only tell so much from the outside - for example the precancerous stics in my fallopian tubes would not have been visible on any scans, but are also extremely rare, so rare that a retired GP friend had never heard of them! Also the few stray cells on my cervix could not have been picked up by scans. 

My hospital (Southampton) were extremely organised: they book the hysteroscopy appointment along with the ultrasound and then cancel if not needed. And when I saw my consultant and got my operation date for my hysterectomy, my consultant also gave me a date for my results just under two weeks after. My op was on a Saturday and the MDT meet on a Friday morning, so he booked me in for late morning on the Friday 13 days post op. Most people seem to have to wait a bit longer nowadays but they should give you an idea, I got my results in person at an appointment at the hospital. 

I personally didn’t find the waiting between follow up appointments post treatment stressful. Having faced it all head on, I was ready to move on and tended to put it out of my mind until the appointment came up. After my next appointment in July, I’m going to request a check up in a year. Feel free to ask anything else at all!

Hello please can I ask what grade you were and if any changes with grade, I am 3 weeks post op and awaiting staging after histology reports I was stage 1a but so scared of the results :(

Hi my staging and grade  remained the same stage 1 grade 1a which was a relief  I do  hope you  hear soon   I too am three weeks post op and the MDT met this week which is where the option of further treatment (it appears to be my choice whether to have it or not) has come from. When I was sent the appointment without any notice I must admit I did I panic that the staging had changed but it hasn’t. Will wait to hear what the consultant has to say when I see them after Easter.