New here, in waiting limbo to see if have cancer

VivD 1 month ago

13 replies
19 subscribers
228 views

Hi folks,

I'm in that tricky place of waiting to see if I have cancer, and having lots of the terror, while not truly knowing. But also knowing enough about what's going on to know that things are not looking good for me.

It's very difficult emotionally at times, even though I'm a very level headed person. The lump on my ovary was found 37 days ago, but it was the result of an MRI with blood tests that raised huge concerns 16 days ago, and saw me immediately referred to the local multidisciplinary team. They didn't consider my case that week, or the next, waiting for the CT scan results, despite the gynaecologist's wishes. Those results didn't come through in time for today's 3rd try of a Wednesday meeting. Fingers crossed for next week!

I've accepted that it may very well be cancer. I just want to know now. Either way I also know they're going to need to operate to remove some stuff, possibly quite a lot of stuff, and maybe do a staging procedure as well. And any operation like that is extra concerning given other health factors in my case.

I'm finding it hard to talk to people other than my husband or gynaecologist about it. Too many people want to say something like "Stay positive!", or "I have a feeling everything will be ok!", or "Hoping to hear good news from you!" That is very much not helping, though I'm currently mainly biting my tongue. My normally calm as a cucumber husband has also been getting annoyed by some of these remarks, even before I say anything to him after. It's also tricky because most people don't realise that I'm going to need an operation anyway, and how very risky it is in my case. And that I can't have a simpler biopsy.

But yup, limbo land. I've accepted I may have a tough path ahead. I've had chemotherapy infusions for autoimmune disease before, and always said I'd do it again if need be. I just wasn't anticipating cancer down the line.

And yes, of course, I may get the all clear, albeit after a hefty operation to investigate. That would be lovely.

But it is what it is. I just want to know now.

Thanks and hugs to all.

Viv

Annousks 18 days ago in reply to VivD

Thank you Viv, I had my fon call today, the lady gynaecologist was lovely. I've been diagnosed with endometrial adenomacarcinoma. It's a shock to hear it in words. I have an MRI AND CT Scan on Tuesday so it will be another wait for those results to stage it etc. And looks like a hysterectomy too.

VivD 18 days ago in reply to Annousks

Oh sending virtual hugs. Yes I can understand it would have been a shock. Wishing you all the best. Glad that the lady gynae was lovely.

I had a text message today re online pre assessment for my hysterectomy, which was sooner than expected. Things can move quickly when needed. Sounds as though they're being on the ball for you as well re the scans. Good luck for those, and I hope you hear the results sooner rather than later.

VivD 8 hours ago

I'm now hopefully cleared for the operation by the pre op assessment people - the gynae consultant/surgeon had been concerned they may not clear me as fit, given extra factors in my case. But amazingly my heart and lungs were in great condition. So I'm now waiting to hear the date of the surgery. Hopefully will hear this coming week.

I generally refer to what I'm having to family and friends as a hysterectomy, but strictly speaking it's a pelvic clearance, of the womb, ovaries, huge cyst and tubes. Because of how all my organs seem to be fused together down there (either from cancer or endometriosis, or both) there's a very high risk of complications, including bowel and bladder damage during the operation. And they may need to switch part way through from robotic assisted keyhole surgery to full open abdominal, which the consultant absolutely doesn't want to start from in my case.

I've been told I'm looking at best at 5 days in hospital, but if things go pear shaped it could be a month or more. I'm honestly currently more scared about the surgery, and the risk of bowel and/or bladder damage, than whether they find afterwards if I have cancer or not. My very placid husband is also more worried about the operation than anything else. And now that it's getting closer and more real it's very worrying.

I'm also dealing with so many people saying "everything will be fine" (my octogenarian Mum said that 4 times in quick succession on the phone the other day) and "hoping to hear good news from you!". I'm finding that hard. My husband and I cope better by taking into account possibilities, and thinking how we'll deal with them. He's thought that we might need to get a special bed cover if I come home with a stoma bag ... I hadn't thought of that one.

Anyway yes, moving forwards. And I'm also getting ready for hospital by ordering in a spare lightweight robe / dressing gown to wear, and more slippers. Trying to think practically, in between freaking out a bit!