Thinking of cancelling my hysterectomy changing treatment

Any advice welcome.

I have hysterectomy booked for 19 Feb. I have stage 1a Cc diagnosis but they think my Lletz in Dec probably removed cancer but margin of safety of abnormal Cgin cells wasn't as good as they would like. I was also offered further deeper lletz and monitoring as alternative.

I opted for hysterectomy as having been told I had cc I just panicked and had a get it all out response.

Now am having second thoughts as hysterectomy is such abig procedure esp as they may have to do abdominal as I have had 2 c-sections.

I am active and only 37 so thought of early menopause (keeping ovaries but understand high chance they will fail in 5 yrs) and the recovery time for hysterectomy ( I thought a couple of weeks but can it be months?) putting me off. 

I feel I maybe shouldn't leap to have hysterectomy and maybe have another lletz. Ifthey find more cc I am no worse off? As?  Can still have hysterectomy. However if lletz clear I save myself a major op. But worried I am then putting myself at more risk. 

I am worried about the emotional effects of the hysterectomy esp as I have had PND and minor depression episodes in my life. I have no cc symptoms so no other reason to have hysterectomy. Will I feel reassured if I have Lletz and then monitoring?

Any advice from the horses mouth?? 

 

 

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Hi there :-)

In my opinion, if you have been offered the option of further LLETZ or other treatments that are less invasive than a hysterectomy then it suggests to me that they are really quite confident that this will do the job for you. I can quite see why being told the word 'cancer' made you take a bit of a leap and opt for drastic measures, but I can assure you that even though I was fifty and already at the start of my natural menopause, and even though mine was a stage 2b, it turns out they were pleasantly surprised by the lack of spread once they got inside me. I have never been told that not having a hysterectomy was an option for me, but if I had an option I would use minimum force. As you quite rightly say, you can always choose a hysterectomy later if you still don't feel confident about your own safety.

Be lucky

Tivoli

Hi Chandos

What a difficult weigh up for you. I think you have to go with your heart, make a clear decision and don't look back either way.

Personally I think I would go with the deeper LLETZ and monitoring, but I am not walking in your shoes. I'm really sorry you are having to look at this decision and wish you all the very best whatever you decide.

Big hugs

x

 

 

Thanks ladies Heard back today that consultant will call me Monday to discuss and it's fine to change my mind. I will make sure I listen more this time. Good to hear your angles on this been helpful thanks xxx

 

Hi Chandos,

What a difficult decision to make, no wonder you're going back and forth. If it helps, I believe a hysterectomy takes about 6 weeks to recover from in general, with most people out of hospital within the week.

it doesn't always mean ovaries need to be removed too, so if they remain you wouldn't begin an early menopause. 

it sounds like you need to chat through the options with your doctor. Maybe a friend could be with you when the doctor calls to remember what he says. Sometimes it goes in one ear and out the other when you're worried.

x

 

Hi,

I agree with Tivoli.....If they have given you an option take

the easier on.More options left for the future if needed.

The recovery time from a hysterectomy varies from person to person,

but I would say most including myself take alot longer than 6wks.

All the best

Becky x

That meant to say easier " One" :-)

Hi. I can't offer any advice about what you should choose to do, but I wanted to chip in about the radical hysteria...I had one in August for 1B2, never had any surgery before, and it was a full abdominal one and I was absolutely fine afterwards...even started swimming again at 5 weeks post op! I know it was major surgery, but in my opinion, it is no worse than a caesarean recovery! Good luck with your decision xxx

Thanks I am relatively fit and have a history of recovering from ops quickly but... if I had to take 5-6 weeks off work I would lose my job as I am on a fixed term contract up for renewal Summer this year. I know my health is more important but I love my job. I kind of feel this is swaying my decision too as if I don't really need the major op then I will be less anxious.

On another note I told some friends about my diagnosis today 2 of whom owned up that they hadn't been for their most recent smear so they both will be onto the docs next week. 

I agree with Rebecca I was longer than 6 weeks I don't think I would have managed to have gone back then BUT like said before each and everyone of us are different. 

Get all your questions written down and make your desision for yourself and your health and body..

good luck

helen..

Hi again,

This is more for the benefit of others with difficult decisions to make, not necessarily for Chandos. I wanted to add that I know what it's like to love a fantastic job and be afraid of losing it, but remember this; you can go and get another job and you cannot go and get another health. Would your bosses put their staff before their own health? I think not.

Sunset Dawn is absolutely correct, taking somebody with you is a great idea because it's really hard to concentrate on the important stuff when it is your own body that is being discussed.

Be lucky

Tivoli

Thanks Tivoli that's a good perspective to have. I will listen to the docs should speak to them tomorrow and I will let them guide me. If they thing Lletz 2 is too big a risk I will go back to hysterectomy. 

 

 

Hi everyone 

Spoke to doc on Monday and she is ok with more lletz. She said if I was younger/wanted more kids then this would have been the preferred option. They recommended hysterectomy due to me saying I didnt want more. She talked thru everything with me and all my q's so feel happy. She did say for me ovary fail was unlikely but bladder damage more likely due to my c-sections. Hopefully lletz will be under LA with same colposcopist and in about a month. 

Work wise found macmillan ahave some good advice like being covered under disability discrimination act when u have cancer diagnosis. May wait and see dates before I tell work but made me more confident to tell them if I need hysterectomy. 

 

That sounds like a win/win/win situation to me :-)

Brilliant! well done!

Be lucky

Tivoli

Hi,

Also in a similar situation to you. Awaiting MRI to confirm but at the moment staged 1a1, consultant thinks a cone biopsy under GA is all I will need, but I like you jumped and thought I want a hysterectomy to cover myself. I’m going to see what MRI results say and what consultant thinks is best option for me.
Well done for sorting your out, sounds like a great plan xx

Hi,

Did they talk to you about the possibility of a trachelectomy? I had 1b and they originally offered me a hyst but I said no. Trach preserves the uterus & ovaries etc and just removes the cervix and surrounding tissue. Still the same recovery time as the hyst in most cases though.

 

 

Thanks for all the useful advice ladies. It's lletz mark 2 day tomorrow thanks to a cancellation so fingers crossed I might know what's what in a few weeks.  If I need further treatment I might ask about the trach although prob as I don't want more kids and have scar tissue guess it might not be an option. 

 

Don't forget to #smearforsmear selfie 

Leanne good luck they haven't offered me Mri. Here's hoping yours is clearxxxx 

Good luck today Chandos

x

Well I have very little cervix left now post Lletz no 2  :-S The consultant was very much steering me down the next stop hysterectomy route. Have to say once again how brilliant the staff were.  I bled a bit in the waiting room after lletz which they dealt with really well by bringing me back in straight away for stitches. Having a chill out in bed now with a hot water bottle and bargain hunt.