Well ladies, at least the picture is becoming clearer. Getting the “you’ve got cancer” news today from the gyn-onc and MacMillan nurse was hard. I cried for the first time ever during this saga; it finally came rushing out after so many weeks of worry but trying to put on a brave face.
At the very least, all the reading I had done, and exchanging messages with you on this forum, did soften the blow a bit. But I am of course petrified, angry and just sad. “I have cancer.” It sounds unreal and just horrible.
MRI and CT are both on Tuesday next week. And this should give clarity on which path to take - surgery or chemorads. They say I am really on the cusp, erring slightly more towards chemorads. Am I wrong to secretly want the surgery for fear of getting ill?
I’ve told a small group of friends; am avoiding telling my family until absolutely necessary. And I pray work will be understanding. I’ve just started at my dream job and am still under probation. I fear they’ll give up on me.
The doctor said they would also investigate my case as they were very surprised to find cancer (after the LLETZ). Thank you for reading. xx
Oh @AnaM Im so sorry your having to deal with this! There isn’t much I can say advice wise but I just wanted to send virtual hugs your way and say I hope your scans can go as well as they can, hopefully they can get to the bottom of why this has happened and get you some well deserved answers! sending my love xx
Oh those horrid horrid words. Those words will stay with many of us for years to come.
Big hugs pet… the words you need to focus on now are ’ time to kick this things a** "
Shammy I know you’re a frequent poster here and have given others hope with your upbeat-ness! Right now I am coping ok but am really really scared about the future. I know it’s about one day at a time but…how can I pretend to be “normal” (and/or ass kicking) with this gremlin inside of me? Yes I am having a pity party tonight…
Thank you, icedblue. On one hand, it’s nice not to wonder anymore. The do I, don’t I was absolutely wrecking me inside. Then some communication bumbling from the NHS kind of confirmed it before I even had my diagnosis appointment. To be honest with you, where I am now is worrying about my job and side effects from the treatment which is likely to be chemorads (I guess). And the weight of knowing that my life is going to be different from now on, the degree to which we don’t know yet. Trying to be positive but mostly I am sad. How are you doing?? Well, I really hope xx
I hope you’re ok Ana, I’m so sorry you’ve had a horrible gruelling wait. The MRI is fine, I didn’t mind it at all actually it was just the fear of the results that made me feel worse about it. My doctor was also very surprised to find cancer after my lletz. I have Adenocarcinoma which is harder to detect from the MRI so need to go back for a further lletz next week and my next stages will be determined. The positive for you is, it’s still early and you will beat this!! Always here if you need a chat xx
Thank you, Jodie, too kind. I hope your next LLETZ goes well - I take it this is to get a larger sample for further investigation? Xx
Yes, I will have further investigation, my appointment is provisionally booked for Thursday but depending on the outcome of the MDT meeting on Wednesday xx
Hoping for the best possible news for us. x
Aw ana I’m sorry to hear your news!! I guess this all came from the 2nd lletz? Sending love xx
Yep. But I’m trying to take things as they come. I am tired of worrying excessively, especially as I now know I need to preserve my energy for bigger things. Xx I hope you’re doing ok? If I read correctly are you in a bit of a waiting game? Xx
Yes I’m still in the waiting game! I have a 2nd lletz on 21/7 and then more waiting for results. Last one was cin 3 unclear margins so they want to repeat it again . Hope you’re doing ok, you have got this!! Xx
Thank you kindly Jem, and likewise I hope your second LLETZ is a smashing success and they get all the baddies out. Xx
I was ‘on the cusp’ (back in 2017). I was advised to have a radical hysterectomy on the basis of a 90% chance of cure; the surgeon said he thought ‘he could get it’ so I consented - with a degree of trepidation. I also had my ovaries removed but I was well past menopause so that wasn’t really an issue for me.
Unfortunately my post op histology showed I had lympho-vascular space invasion (LVSI), peri-neural invasion (PNI) and a close anterior margin; my staging moved from 1B1 old Figo (1B2 new Figo) to 2A. I was devastated when I was then advised to have chemo-radio as well.
So ironically I ended up having more treatment than someone whose diagnosis was more advanced than mine. However I believe I had a lower dose of external radiotherapy than if I’d started of with chemo-radio and also my brachy was only two short sessions in out-patients.
A couple or so years after my treatment my surgeon said there had been quite a heated debate whether to offer me chemo-radio following my surgery. He said he felt the surgery would have been effective but apparently the oncologists were very much advocating further treatment and he was outnumbered. Not sure if I needed to know that but, as good and experienced a surgeon as he was/is, even the best don’t always make the right call. There can be ‘many shades of grey’ with this thing but I’m asssured protocol was followed and everyone did what seemed best at the time.
We’re all different and cervical cancer treatment isn’t easy for anyone but I can particularly empathise with the ‘on the cusp’ treatment dilemma. Rightly or wrongly I went along with the treatment recommendations of my oncology team albeit I agonised over whether I should choose other options. I feel I’ve been fairly unlucky with side effects and I went through a period of wondering/regretting if I should have made other choices but, of course, I can never know how they may have ended up.
If you’re in the UK I suggest contacting Macmillan for help regarding your concerns about work. The Equality Act considers a cancer diagnosis as a disability and means you have certain rights which Macmillan will be able to advise you about. Even if your employer is understanding and supportive, from personal experience, I recommend contacting Macmillan:
Hi Jazza - thank you for the valuable perspective. You’ve been through a lot - I really hope in and amongst the pain there’s also been lots of good, pain-free times.
It is indeed a conundrum. They way the doctor described it was, there was some CIN3 but more cancerous cells than not in the LLETZ sample. But as they weren’t expecting to find cancer, the sample is an average sized one, making margins difficult if not impossible to see/determine. I would of course like to get the plan right the first time, so I hope whomever will be in that MDT meeting two Tuesdays from now can pull it together…xx
Oh I am so sad to read this. Sending love and hugs xx
Don’t know what your history is but they audit previous smears up to 10years beforehand anyway - what you sign for is that you want the results sharing with you.
If you’ve had nothing before this then they will be looking to see if mistakes were made beforehand. I had all neg and then in 2019 was diagnosed 1b1. There was no discussion of any other treatment but a radical hysterectomy. I also asked for the audit (apparently they would have done it but I wasn’t aware of any of this it was only because I asked and signed to have results shared) communication has been very poor and it took over two years to get results. In the end they’d missed cell changes on both the 2013 and 2016 smear which would have avoided cancer and the surgery I had at 35yrs old. Not sure how old you are or whether you’d want to know but for me I did and am now having a solicitor take on my case. It all could have been avoided. The consultant himself said they’re liable and I’m eligible for comp.
Really hope you have the treatment you want and you recover well. It does sound surreal hearing those words and it’s still hard to believe it happens to you. It took me 6 -8 weeks off work and a very short phased return but fingers crossed you’ll be back to your old self before you know it. Work wise you should be covered I can’t imagine they can discriminate due to a cancer diagnosis.
Fingers crossed for you
Hi @Mel.T, I’m 48, had plenty of “normal” smears, then one abnormal that led to my first LLETZ way before 2021/22 when this current saga began.
I do fear that I, along with too many other women, have been failed somewhere along the way. How else do you explain it? I really appreciate you sharing your audit experience as it is worth following up on!!
And I appreciate the words of comfort around work. I really, really hope you’re right xx. My paranoia is simply because I am so new to this job, is all. Who shares a cancer diagnosis with their new boss one month into the role??!
Yes it is a tricky one but I suppose you have little choice. I’m sure they’d be very understanding. It’s real life isn’t it.
Fingers crossed for you and keep us informed with how you get on xx