Hysterectomy Stage IB2

Hello all. I have been staged with 1B2 cancer and I’m scheduled for a radical abdominal hysterectomy next week. I’m wondering if anyone here can give me insight about the likelihood of having clear margins after? How long did you have to wait for pathology results? How was your recovery and do you have any advice for healing?
Feeling so scared about this major surgery and worried that afterwards I will still end up needing chemo/radiation.

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Hi @ahh80

Sorry you have found yourself here. I was staged 1b1 in January and had surgery last month, my results came through just over 2 weeks later and the histology showed clear margins and no lymph node involvement.

With regards to surgery, I would recommend starting lactulose now to avoid constipation post surgery, get plenty of rest/sleep, drink lots of water. Make sure you have something you can do in bed as moving around is hard and tiring for the first week or two x

Hi ahh80

My initial diagnosis was 1B2 (old Figo 1B1) squamous cell cc; tumour measured 3.8cm. I had a robot assisted laparoscopic radical hysterectomy and my surgeon thought it had a 90% chance of success. Unfortunately post op histology showed lympho vascular space invasion, perineural invasion and a close margin, restaged to 2A1 and advised to have chemo-radiotherapy which I did.

I don’t know what the stats are for having clear margins after a RH. The medics want to get it right first time, as much as we do, and I think for the most part they do.

How is your surgery being done? open? laparoscopic?. It makes a difference recovery wise. In terms of healing I advise listening to your body; it’s to get mobile asap but you should rest when you need to, be kind to yourself.

x

Hi alwaystheweekend, thank you for your reply! I’m glad to read that surgery took care of everything and you had clear margins.

Can I ask what kind of hysterectomy you had? Was it laparoscopic or open abdominal? My oncologist said that the laparoscopic has a higher rate of recurrence.

Thank you, Jazza! This will be an open abdominal surgery. I am concerned about the recovery of such a big wound. I have had laparoscopic surgery for endometriosis before, but never something like this. I’m sorry to read that you still had to go through the chemo/radiation. How are you doing now?

@ahh80 I had open surgery, my specialist also said the same about recurrence. Now I had previously had an emergency c section so had an idea of what recovery would be like, this is a bigger operation and also they went through my scar tissue which apparently causes more pain. Jazza is right about getting mobile, little and often to start, trips to the loo and also the foot and leg exercises to prevent blood clots, the physio should go though that when they get you out of bed after surgery, the first 2 weeks I stayed upstairs and just did slow laps of the bedrooms. Oh, Make sure you have a cushion for the journey home to put between you and the seatbelt and tell whoever is driving to go slow and avoid potholes. x

Hi ahh80

I’m doing fairly OK thank you for asking. My diagnosis and treatment was in 2017, which was before laparoscopic surgery for cc fell out of favour. I was discharged from follow up last year: ‘no evidence of disease’.

Recovery has had it’s ups and downs but, apart from being one of the minority to develop lymphoedema, most of my problems resolved fairly well with time.

Hi :wave:

I had an abdominal radical hysterectomy in June last year for the 1b2 squamous cell carcinoma. I’m 39. It took about a week to get the results and I have no evidence of residual cancer. I modified my surgery to have sentimental lymph node mapping so that I had some lymph nodes left due to an increased risk of lymphoedema.

Always hear if you have any questions.

Lou xx

Hi Jazza! So glad to read that you’re doing well with NED! I am worried about the lymphodema too but hopefully it will be minimal or a non-issue.

Hello Lou! Thank you for your reply! I’m so glad to read that surgery took care of everything for you! I hope you contact to be cancer free. I am not entirely sure how many lymph nodes the doctor took out of me yesterday. I am awaiting pathology now and my doctor says we should have results by the end of the week. He is confident that he took good margins and says that he didn’t see anything concerning other than the cervix. So I’m just anxiously waiting.

How are you feeling?

If you ever need to chat, please do drop me a private message. Anything I can talk through or help you with please just shout.

One thing I wished I’d asked for sooner was some senna to move the bowels along. They left me far too long and on day 5, I was in discomfort as the drugs had slowed my Bowels right down.

Hi, sounds like we are on a similar path.

I’m having an appointment with my consultant today for scan results and treatment plan. He estimated a stage 1B2 and I’m booked in for a radical hysterectomy on 16th May.

I was expecting to find out today if I’ll need any further treatment after the op - i hadnt clicked that they will need to run tests to determine that.

Its good to read everyone’s experiences and know what to expect. Good luck to you @ahh80, i hope the surgery goes smoothly. :pray:

Wishing you the very best. Great advise here for recovery. My similar open surgery was in January 22. Rest and excercise! Things i might have liked to know are: Def. listen to your body and rest. Particularly the first 6 weeks - help the scar heal. I would have like to have known to stretch my legs more in the bed in the early days, but later also . I began yoga in September 2022, and would recommend it and walking etc. Drink lots and lots of water! wishing you the best.

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I had 1b2 diagnosis and had my radical hysterectomy Feb this year had vertical cut told that open surgery was gold standard for cc as there was less chance mircroscopic cancer cells would be left behind. The histology came back in 10 days had a phone call to tell me then at 14 days face to face appointment to check healing and go through histology again. Mine was clear of cancer in everything they removed. I joined a hysterectomy group on fb and that’s been a godsend as I didn’t get a lot of info on what recovery would be like. My advice after rest rest rest and when you think you’re ok rest again. I’m back at work this week after 9 weeks but probably should have taken a little bit longer. Good luck you will be fine xx

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Hi Zzzaaacc1, thank you and congratulations on having clear margins!!

I am taking 8 weeks off of work as that is the most I could be approved for. Hoping that it will be enough.

I am also booked for a radical hysterectomy on the same date . Hope it all goes well for you :heart:

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Hi Raquel, thanks for the well wishes. I wish you the best as you’re going through this. It has been the toughest thing I’ve ever had to do. I will say that days 2-3 after surgery were the toughest. Yesterday and today have been better (days 4-5). Right now I am just dealing with a very sore tummy at the incision site and some yucky constipation, which I am sure is increasing the soreness.

I stopped taking the narcotics and didn’t take any yesterday as I was worried about it making the constipation worse.

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Thank you for the advice RosaT. I am resting well at home but still trying to get up from time to time to move my muscles. There is a fine balance between resting and getting active during this recovery.

Wishing you a speedy recovery and clear margins!

You too, @tene03 <3 Let’s hope for clear margins and a good recovery. x

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