Hysterectomy done, what now?

Hi Flatlander, welcome to the group! And well done for having had your op. Do you have the contact details for your CNS? They should be able to advise you. For me, I was lucky in that I got my results appointment through before I’d even had my op as that’s how Southampton work. Mine was 13 days afterwards but I think that’s not typical and it varies a lot from hospital. I’d suggest you ask when it’s likely to be and how you will hear. Mine was predicted grade 1 stage 1A, but it was revised to stage 2 post op and I was offered radio and brachy. The national guideline is to start that within 12 weeks; mine started 11 weeks post op, and my oncologist apologised for that. Post treatment I first of all had 3 monthly checks, then they wanted to put me on patient led follow up, but I asked for continued in person checks and I’m currently still having those every 6 months. (My op was in Jan 2022). How are you doing with your recovery?

Hi Flatlander

Welcome to the Online Community and the Womb group.

I am sorry to hear that you had a diagnosis of endometrial cancer. I hope that you are starting to recover from the surgery. I found that the recovery was ok as long as I had plenty of rest and paced myself. I found short walks helped.

My histology results came through (with a lot of chasing) at around 3 1/2 weeks post op, but there can be a lot of variation between hospitals. It just depends on how busy the pathology lab is. There is no harm in emailing your surgeons secretary (should be on discharge paperwork) or calling your CNS for an update. Most hospitals seem to discuss the results at a Multi Disciplinary Team meeting (usually held once a week) and then call you after it. Its where all the professionals get together and discuss what next. 

Your stage 1 and type 2 is a provisional diagnosis based on your biopsy and scans but it is the post op pathology that will confirm it and also give them a few other markers and genetic factors that will help them decide if you would benefit from some follow up treatment. 

I had my pathology results over the phone because I emailed my surgeons secretary and he called me back. Sometimes you are given an appointment. There is usually a choice.

I went to the hospital for an appointment at 5 weeks post surgery to discuss chemo and external beam radiotherapy. 

Chemo started just after 6 weeks post op. I had another appointment just before my last chemo to discuss radiotherapy. That started 3/4 weeks after the last chemo. 

I get seen by my hospital every 12 weeks. (for 2 years) Then it goes to patient led follow up for the next 3 years. I find it reassuring to be seen in person. But there is variations between hospitals and it can also depend on your follow up treatments- if you need them. 

I was a bit like you in that I tried to focus on the surgery first and then realised I didn't know what to expect next. I suppose its a good way of doing it- one step at a time so its not so overwhelming. Hopefully you will hear very soon about your results and will know what the plan is. Give your CNS a call at anytime- they never mind. 

Hope this helps and that you are not waiting too much longer, in the meantime we are here if you need us and any questions, please do ask.

Jane

Thanks for the reply Jane, it’s reassuring to know that my results aren’t stuck in the system somewhere. My cancer nurse left to join another department straight after my “breaking bad news” appointment and her replacement is on annual leave in the Lake District! Similarly my surgeon went on a conference the day after my op, I was checked by two different consultants after that so continuity of care really.

My discharge seemed remarkably casual, they checked me over and then said “you can wander off now”!

Thanks Marmitefan, I suppose it’s only 9 working days due to bank holiday… I may email the nurse so the message is waiting for her after annual leave.

Recovery is going quite well, minimal pain (easily tackled by paracetamol plus ibuprofen) however I had 30 staples and picked up an infection in the wound in hospital. The nurse at the doctors surgery put me on clarithromycin on Thursday however it doesn’t seem to have kicked in yet. I had a third of the staples removed at that appointment, another 10 on Monday, if all is good I will get the remaining ones out next Thursday. Slightly concerned about the infection though.

Hi I also had an abdominal hysterectomy and recovered well. Hopefully your infection will soon clear up! When my results were in I had a call from the consultant’s secretary with an appointment time. May be worth giving them a call instead of waiting for the specialist nurse to get back from leave? She should be able to give you an approx timescale for results to come back. The waiting is so hard isn’t it.

Hi I popped my timeline in my profile so that might help. I too was discharged from my local hospital after the operation with very little info but did see my CNS before I left which was helpful. I had my follow up about two weeks after the operation but that was a bit premature as the consultant gave me the all clear before the full histology results and MDT had met (not that they ever mentioned the MDT whenever I saw them). Have to say my specialist cancer centre and the oncologist there much more on the ball and patient oriented.  I found this site really helpful in knowing what to expect.  Hope it isn’t too long before you get your results and next steps.  

Hi Flatlander

I  am new to the group , I had my total hysterectomy plus ovaries etc on 20 May , at Derby royal hospital gynaecological cancer centre,I was  diagnosed on 8 May  with endometrial hyperplasia with atypical ,I am waiting for lab to return results . I have 40% chance of cancer . I have been told if I don’t hear from the  the clinic in 4 weeks to phone ,  I feel like you in the dark , let me know how you get on x

Thank you travellinggirl and Hydrangea for sharing your experiences. No apparent change in the infection after 6.5 days of erythromycin, I’ve got an appointment tomorrow am to hopefully get the rest of the staples out, I shall raise it with the nurse.

Hi Tanyard, again thanks for sharing, I completely share the “in the dark” anxiety, I hope that you get excellent news very soon, I have my fingers crossed for you. 

Hi, I had hysterectomy by Robotic method, I was discharged the following day and made a brilliant recovery. I got a phone call from my surgeon 3 weeks after the op to say the cancer had spread out of my womb to my Cervix and my diagnosis was then staged at  Grade 2 endometrial endometrioid adencarcinoma FIGO stage 3A. I was given an appointment the next day to see my Oncologist. He said because the cancer had spread out of the Cervix there was a possibility that there would be cancer cells in other places. He prescribed 18 x  weekly chemotherapy, 25 daily external beam radio therapy and 4 sessions of Brachytherapy over the course of 8-10 months. I started chemo last week but had an allergic reaction to it (not every one has this, I have an allergy to Yew Tree which impacted this.) I start a new drug tomorrow 12th June called Docetaxel which I will have on a 21 day cycle. My surgeon told me its a 3 week wait for the results as every thing they take is sliced into minute samples to make absolutely sure they get a 100% reading. I am based in the East Lancashire Hospitals area. Usually there are 2 or more  CNS so give them a try and see if there is someone there who will help you. Good Luck and please keep us all updated x  Remember there is someone always here in this group. x

Good luck with your treatment today. I hope it works out this time.

I have updated my profile, but the upshot is that I don't require further treatment at the moment.

Even so my head is all over the place because I had feared the worst, but realise I am lucky.

I hope that you do well and have a good outcome.

Kx