Met with my consultant today & he confirmed there was a 1cm area of cancer in the considerable part of my cervix he removed by LLETZ back on November 1st. He thinks he got it all.
Next step is an MRI to check for any more followed by what he thinks might be a radical hysterectomy.
Totally game for the hysterectomy, the waiting is the worst though.
Just turned 40 & don’t know what to think.
The waiting has definitely been the hardest part for me. I like being able to plan, I’m not that patient and I’m normally the one who takes charge of things, so it’s been a tough few weeks so far.
I had an LLETZ in November and got the news in early December that it was cancer. I had an MRI and CT to confirm stage 1B and that it hadn’t spread. And yesterday I got my date for my hysterectomy so it’s full steam ahead now. It’s only been a matter of weeks but it’s done a bit of a number on my mental health.
My surgery is in a couple of weeks but I’m not too worried about the hysterectomy. I’m 34 and we dont want children so it’s been easy to accept that side of things. But the lack of control and the timing being all out of my hands is tough - I’ve had a few wobbles around that.
I hope you get your scan soon and can start looking ahead. This forum has been great for positivity and you’re not alone in the journey xx
Thanks so much for your reply. You sound like me. I get things done & this waiting isn’t my style either. I’m sorry it’s been tough on you. Have you found anything that’s helped distract you? Even for a little while?
I have two teenagers. I’d already grieved for not having more children a few years ago, had decided I wouldn’t have more after 35 so I’m okay with that side of things too.
Hopefully I’ll hear quickly about the scan. I’m already worried about the wait for those results. Can I ask, it must’ve been a relief when you heard it hadn’t spread, did you find an upturn in your mental health when you knew it was full steam ahead, did anything shift for you? Xx
The Christmas break was difficult…because we didn’t know how soon the surgery would be we cancelled a lot of things and really cut back on who we were seeing because of Covid. If I’d have known that the surgery would be further away I might have played it a little differently.
But over the break I tried to find a balance. I made sure I did at least one proper ‘thing’ a day. Cleaning, baking, sorting out pets, crafting etc. Then I found I didn’t feel so guilty when I headed for the sofa to binge Netflix.
I’m back at work for half days this week - they’ve been really supportive and flexible so that’s helped a lot as I’ve been able to do what feels right for me. I’m going to have next week off and spend some time getting the house straight and clean before my surgery the following week.
It’s been a strange journey. It sounds odd but I’m not worried about the cancer. I feel like they’ve caught it early and they know what they’re doing so I’ve been able to park other thoughts.
When they told me it was cancer they were already fairly confident it was 1B and said so at the appointment. I thought that if they were prepared to say it, they were probably right so the wait for results wasn’t too stressful in itself - but I knew the treatment was coming so I just wanted all the boxes ticked so we could get to the next hoop.
I slept better last night knowing I had a date. I feel I’ve got a little bit of control back as I can now make proper arrangements with work, pack my hospital bag etc.
I’m not sure I really believe it all to be honest. Im anticipating that I might have a bit more of a wobble in the immediate run up to the surgery when reality hits. I’ve never stayed overnight in hospital before so that’ll be an experience.
You sound like you’re doing really well, you really do. My husband said to me today that I’m doing really well, like you I’d been doing a “thing” and making use of Netflix over the break. Hadn’t seen many people either. Today particularly the wobbles have come on in waves so I’m letting them happen & letting them go. I’m keen for him to let it happen too.
I think I know what you mean about it being strange even though I’m a little behind you. I had my LLETZ & it was all quite reassuring, then today the same consultant said the cancer they had found was within the bit he’d removed already… so I don’t know how to feel about that & wont til after the MRI to see if there’s more or not I suppose. I had an MRI last yr for an injury & my consultant has already contacted that radiographer from then & had him look over it again. He couldn’t see anything.
I am back to work after the break tomorrow. Don’t know how I’ll cope but it’ll be a good distraction I’m sure. I’ll be like you & lose it a bit before I get to hospital. I’ve stayed in maternity but I’ve never had an operation… xx
Hugs and good thoughts for both of us!
Definitely good to let yourself feel and get through the emotion. I’ve had a few proper sobbing sessions in the last few weeks…one was triggered because I was having trouble getting a refund for something and it all just felt so overwhelming at the time.
My husband has a good tip he’s passed onto me to help manage worry…Tomorrow CV26. I keep telling myself that whatever the worry is I can’t do anything about it today / right now so it’s Tomorrow CV26’s problem. It helps me move on when my brain is in a bit of a loop over something. Probably going to be using that a lot over the next few days.
Hope your first day back at work goes ok xx
Thank you I’m not looking forward to it at all but I’m going. Hopefully it’ll keep me distracted and not be too overwhelming.
A good tip! And I know what you mean already… my husband looked at me earlier & I burst into tears all he did was turn around! Oh dear. Haha, I wonder what else will set us off?
I hope the time flies in for you now, do keep in touch & don’t hesitate to drop me a line whenever you like, good or bad, I’ll be here. Xx
I wasn’t keen on going back to work. I had in my head that I’d roll right into sick leave. But it has made this week pass more quickly already so I hope it proves a good distraction for you too.
I hope your MRI date comes around quickly and the results follow swiftly. Xx
The waiting and anticipation is really hard, and it sounds like you’ve found some strategies to try to manage this awful period. I’m sorry you’re in this situation but hopefully your surgery (if that’s confirmed) will go well and you’ll be in a good place not too far off from now to hopefully put this phase behind you.
I was diagnosed 1b in September and had a radical hysterectomy with sentinel lymph nodes removed in November. I don’t need further treatment at the moment as the cancer hadn’t spread. Recovery has been tough but manageable with the support of my family and friends and a lot of patience. It’s all happened quite quickly now I look back on it (but didn’t feel like that at the time!).
Hi purplecarrot, thanks for your reply!
I can see that looking back I might see it differently than how I see it now. I’m quite a game wee bird & my consultant is well aware that I’m not messing about here & that I’m good for cancellations etc.
Can I ask? Do you feel like you’re getting back to “yourself” or close to it? Is that a thing?
Hi first time posting. I see you guys all had llertz I went for mine and 4 local anaesthetic and I was in absolute agony and consultant couldn’t get a good enough view as viginal wall was bulging. But has anybody else experienced so much pain. He was saying it’s just heat and I was like nooo it’s not it’s agony every movement??? Re booked me for general anesthetic on Tuesday had my pre op today. Sorry for hijacking your post. Xxx
Hi @cricky, I wouldn’t say I’m back to myself (and wonder if I ever will having had a cancer diagnosis?) but the past few weeks I’ve definitely been able to do more of the stuff I enjoyed before like longish walks in the park and popping over to a friends for coffee, so it does feel more like normality is some ways. I read that trying to have a positive outlook can help and I thought this would be really hard to do, but I’ve surprised myself at times and I think appreciating some positive things each day, even if small, has helped.
@Cricky oh and it’s definitely been in stages - I’ve been there with the spontaneous tears and really dark moments too. It all comes in waves but I think it’s all completely normal!
That sounds really awful for you, I’m sorry they weren’t very sympathetic. My LLETZ was with a local anaesthetic and I don’t think it worked everywhere as I felt one bit much more than the rest and flinched when I’d been told to stay still. Although a general anaesthetic sounds scary it will hopefully mean they can perform what they need without hurting you, and you should wake up with a drip/IV so if you’re in pain they can quickly give you something @jobdo
No need to apologise! I had LLETZ with a local and it was absolutely fine, worst bit was when he removed the thing at the end. We’re all different though, I’ve read a lot of comments where they found it painful or uncomfortable.
Thanks guys for the replys. My pain tolerance is quite high but I was literally screaming in pain more when he was moving the spectrum trying to get a good view. They have done the biopsy and it’s cin 3. Hopfully they can remove all with the llertz under general. Just worried that there’s more to worry about with all the pain and the symptoms that started afew months back that this whole smear ect was done. Thanks guys and good luck xx
Hello I am 37, 2 children.
I had 1B1 CC found on colposcopy in Nov. I had a radical hysterectomy and pelvic lymph node removal 4 weeks later. I am now almost 6 weeks post op.
I just thought I’d say hi in case it’s helpful and if you wanted to ask me anything. Take care,
Hello Bootiful even just writing that made me smile
How’s your recovery been?
I have an MRI tomorrow to see what’s next.