Hysterectomy- is this normal?

[MissDefoe]

I have name changed for this.

I’m 46 and had a womb cancer diagnosis in February. I’ve just had a total hysterectomy. I was told there would be a check up after 4 weeks but when I phoned yesterday to ask the date I was told they don’t do this anymore and there are no check ups.

I’m managing ok but I’m really quite shocked that I’ve not had a single phone call from the hospital or cancer team (if there is one?) or nurse specialist or anyone to ask if I’m ok. I’ve had barely any actual literature to read about what to expect. What I was given was for an abdominal hysterectomy which I didn’t have. I had to ring to ask exactly what was being taken out of me and the nurse read it off the booking form. I’ve had quite a few scans but heard nothing back.

The operation went fine which is the main thing. I read in the discharge letter that there was a fibroid which I didn’t know about. And that the operation was done laparoscopically (which I knew) but also vaginally which I didn’t know. I have stitches which are apparently dissolvable but I have no idea when they are meant to dissolve. The ones in my vagina hurt and I’m not sure if this is to be expected.

The surgeon was excellent but not the best communicator - it’s fine I would rather she was good at what she did. But I feel a bit all at sea with what’s going on and I guess my question to you all is to ask if it is normal to have zero support and information with this kind of thing? I’ve purposely avoided things like the “hyster sisters” website support groups because I wanted to keep it low key in my mind and not to get stressed about it all. I’ve been Googling a lot to help me understand what’s going on and some NHS trusts have created some helpful booklets.

I’m an NHS patient so I expect that private patients get a lot more contact and support. But to all of you who have had hysterectomies (and also to treat cancer) have your experiences been similar?

I had a lap hysterectomy in January. Did they check your sentinel nodes?

I got a follow up call to tell me that the nodes showed a few cancer cells but not enough to need radiation or chemo. Any care I needed I was supposed to see my GP. There will be a follow up appt with the surgeon in June (I will not be surprised if that happens a lot later.)

Hi
I don’t know if they checked the nodes. She said they send off what they took out and check it and I may have to have radiotherapy but I’ve heard nothing yet.

Who was it you phoned to check the date for follow up op?

Sorry about your diagnosis OP, but no it's not normal, you should definitely have a post op follow up after a cancer diagnosis and a contact number of the nurse specialist for any questions. Can you try ringing the nurse specialist or the consultant's secretary and see if someone can have a chat with you on the phone?

It was the nurse specialist I spoke to who confirmed there are no check ups. She said I would be contacted if there was anything I needed to be spoken to about.

I would phone the consultants secretary first thing Tuesday.

I did have a total hysterectomy, vaginally assisted laparoscopic, pre pandemic. I had no follow up for the actual op but no cancer so I had no concerns.

The sutures do dissolve but it takes longer than you think. I had a horrible flood of blood once the swelling went down and the bleeding was finally able to get past the swelling. I think it was around 6 weeks. Also -sorry if tmi- a few huge clots. I could actually see the imprints of the sutures in them so assumed they had started dissolving and so the clot had, sort of, been released as it were.

I didn’t actually have a letter with the lab results until a couple of months post op but I would assume with cancer you would hear pretty quickly.

Sorry you are having to worry like this. Do phone the consults secretary. Just phone the main hospital switch board and ask to be put through and tell the secretary your concerns. She will be able to speak to the cons and get back to you.

I had a total hysterectomy last year. The laparoscopic bit is the snipping, the vaginal bit is how they remove it all.
Mine wasn't for cancer, but I didn't have a follow up appointment either. They told me I didn't need a sick note, so was back in work 2 weeks later, got a phone call from the consultant at 6 weeks to check I was ok and that's been it. My internal stitches stung for quite some time (like ages rather than a couple of weeks) and I had the ones from my biggest keyhole wound removed as they kept catching on my clothes.
I was a little surprised to say the least that my after care was so minimal but given the shit care in hospital I should have expected it really!

Thanks so much everyone for your comments - really helpful.

Call your consultants secretary and explain your worries and any questions you have. They will liaise with your consultant to get you the answers you want.

Has anyone discussed HRT with you?

I asked the consultant just before I went into surgery about hrt and she said I couldn’t have it as another cancer could come back more aggressively.

I'm recovering from similar op done privately. (I was told it might be done in May via NHS.)
I was sent home with leaflets and like you have found some very useful info online from different NHS trusts.
I do have a four week telephone appointment booked with the surgeon.
I DID need to have lymph nodes removed which was made clear by NHS after imaging results had come back. I have just had a call back to say they were clear.
Both NHS and private hospital did say they had a cancer nurse to contact to speak to if I needed.
I have have picked up 6 weeks being the time for internal healing to take place but can't recall where from now! The anaesthetist pointed out that though the laprascopic wounds are far smaller than old style surgery, internally you've had just the same amount done. Which was a helpful way of looking at it for me anyway.
Best of luck. X

Have you still got your ovaries OP? Or by total hysterectomy do you mean you don't? You need to read up on menopause and HRT and maybe find a menopause specialist as I think your consultant might not be up to date. At the very least you can make an informed choice. I've included a screen shot from one of the booklets on the website below.

www.balance-menopause.com/subject/cancer/

I had a hysterectomy for cervical cancer three years ago. I didn't have a check up as such, but saw my gp for sick lines so was able to discuss recovery there. I stayed off work for 8 weeks after the operation.

I didn't hear from my consultant until the histology report was in from the operation. This was about 3 weeks after surgery. They confirmed cancer hadn't spread further. I would think you'd get a follow up like this at the very least.

Definitely get in touch with your consultant if in any doubt.

[quote Apileofballyhoo]Have you still got your ovaries OP? Or by total hysterectomy do you mean you don't? You need to read up on menopause and HRT and maybe find a menopause specialist as I think your consultant might not be up to date. At the very least you can make an informed choice. I've included a screen shot from one of the booklets on the website below.

www.balance-menopause.com/subject/cancer/[/quote]
Everything was taken out. I’m pretty much hollow in that department now. Ovaries tubes the lot.

Thanks I will have a read of that information. She said the risk of another more aggressive cancer coming back with HRT would be counter any positive effects.

Yes I agree it can be tempting to think with the tiny portholes all healing up that the surgery was not as major as it was. Important to remember it was the same operation inside!

I had a follow-up for physio at the hospital. Anything else I had to book to see a GP. TAH/BSO.

Well you can read up at your leisure, OP. Everything I've come across seems to be saying modern body identical HRT is very safe. A lot of doctors and consultants don't seem to have the right information and women are suffering unnecessarily as a result. It seems to be breast cancer that is the biggest concern so I'm surprised, I dont understand how you could get a different type of cancer now when you've had everything removed.

Look out for the symptoms of menopause so you'll recognise what they are if they hit. It might be a bit of a shock for your body. Have you been given any literature or anything on that?

Just to warn you that the stitches used to close the top of the vagina may emerge looking like a huge spider - mine gave me quite a turn until I realised what it was.
I'd call your consultant's secretary and ask. You don't need to know their name (but ask when you are put through so you know for the future). Just ring the main number and ask for consultant X's secretary.

They may be bio identical hormones, but it the op has a tumour which grows with estrogen then she can’t take them.

@vipersnest1

Just to warn you that the stitches used to close the top of the vagina may emerge looking like a huge spider - mine gave me quite a turn until I realised what it was. I'd call your consultant's secretary and ask. You don't need to know their name (but ask when you are put through so you know for the future). Just ring the main number and ask for consultant X's secretary.

Thank you yes I can kind of see it’s black and can imagine it looks like a spider. How long till it comes out? The nurse specialist said I can take out the stitches on the portholes with tweezers myself after day 10 but I can’t bear it… and I also can’t see how it’s knotted so I’m not sure if I would be pulling on something that can’t pull if you see what I mean.

They’re meant to be dissolvable so I think I’ll try and wait.

I dont understand how you could get a different type of cancer now when you've had everything removed.

Womb cancer can come back in the vagina or bowel, or can metastasise to other parts of the body. I think you should leave it, it's not the focus of what the OP is asking and it's pretty insensitive to tell a woman with an oestrogen-receptive cancer to take HRT when she's been warned against it.

Hi there missdefoe,
I had an abdominal hysterectomy 16 days ago for womb cancer. My experience was that I was given all details of the surgery beforehand as I had to sign a consent form and demonstrate my understanding of the risks.
I was told by my consultant that I would be telephoned with histology results and further treatment plan (not called yet) and that I would be followed up.
In terms of HRT, I agree with previous poster that it’s a no no as endometrial cancer is oestrogen positive - I say this as someone who has also had breast cancer. It’s a huge shame but there are other ways to manage the effects of menopause. I saw (privately) a menopause doctor and will follow up with them when I’m a month post surgery.
I wish you a full and speedy recovery. Btw totally with you on the ‘hyster sisters’ - not my scene. X

I'm also going through this at the moment.
Diagnosed with womb cancer in January, I had a hysterectomy over three weeks ago. I met the surgeon before the op and he explained exactly what would be removed (everything) and sentinel lymph node and omentum biopsies would be carried out.
The op went fine and I was home the next day but, like you, there is no after care - no follow ups. Not much advice from the ward nurses - in fact minimal interactions between nurses/patients. On discharge, I even had to pester them for the ward phone number in case of problems.
The consultant rang me yesterday with the biopsy results - the good news is the cancer hadn't spread (stage 1b) so in theory I'm currently cancer free. The bad news is the cancer is rare and there are no precedents for how to treat it, so I will be undergoing chemotherapy, radiotherapy/brachytherapy 🙄
Best wishes for your recovery Op and fingers crossed you get good news soon