Handhold if anyone’s around? Scan yesterday at 5pm, GP called this morning

[GiveOverWillYou]

Wondering if anyone has any experience/insights?
Late 40s, on HRT. Cycle usually still rock solid, horrendously heavy, except for last few (2-3) months - spotting, random bleeds, periods when not due. Bit of pelvic discomfort.
Went to GP, but kind of hoped assumed it was the beginning of the end of periods and just the timing going haywire/and to find out how I should be taking progesterone as had previously been on that Day 15-28 and cycle being out of whack meant that that regime was going to be hard to do. GP said she could feel something on the left hand side. Recent CA125 was fine, recent smear was clear ‘but cervix is very red’. My cervix has always defied medical science (that’s another story) so wasn’t unduly worried. They upped progesterone to 200mg daily, put me on the 2 week wait for internal/external US. It’s been 5 weeks 😬but I had the US last night after 5 o’clock. Sonographer was rummaging around for ages (over 30 mins) and made a point of saying the GP will be in touch, but if they aren’t, you must contact them. I know they usually can’t/don’t say much. Told myself that it was good that the tests have been done and that I’d hear in due course, not to worry in the meantime. Then this morning I have had 3 calls from the GP before 10am, which I missed as was in a work meeting with phone off. I called them back and they asked me to come in at noon. So now of course I am absolutely shitting myself, and have self-diagnosed with every gynae cancer going.
Don’t know what I’m asking for really, other than a handhold, and if anyone has had similar happen and it turned out to be something that wasn’t nefarious. I feel lucky that at least I find out what’s going on this morning but the speed at which they’ve followed up is terrifying me 😧Speculation of course, but I can’t help but feel that if this was, I dunno, fibroids, there wouldn’t be this level of urgency this morning

Adding my hand to hold. I hope you have some definitive news soon.

Just wondering how you’re getting on @GiveOverWillYouand sending good wishes

How are you op?

How are you doing @GiveOverWillYou ?

Thinking of you

Hope you're ok OP. Sending best wishes xxx

Rooting for you, OP. And maybe you should write a book when you're fully recovered. Your humour comes across even in describing very tough moments.

I hope that you are doing well @GiveOverWillYou, and that you are busy doing lots of lovely Christmacy things. I, and I am sure many other Mumsnetters, are here for you if you ever need us for anything. I am trying to send you love and positive energies through concentrating on your name and the Mumsnets web address, I hope at least some of it can filter through to you 🩷

Yes same as previous poster OP. Ive checked in to see how you are x

Hope you are ok x

I’ve only just come across your thread and wanted to first of all say how amazing you sound in how you are handling it. You sound really sensible and I completely get wanting to arm yourself with information and the likelihood of various conditions.

Have you heard anything back from the biopsy or MRI (I hope you’ve had this now)? I’m very much hoping the lack of update means it was all good news!

I have everything crossed for you… and I hope your DH is still doing the cooking!

Hello ❤️

Thank you all for thinking of me ❤️

I’m sorry I’ve been a bit AWOL since I last posted. . . The past couple of weeks have been very surreal indeed and my head has been firmly implanted up my own arse.

I think I went into a bit of a hole really, not helped by the worry, the waiting and by the run-up to Christmas (which always gets me in the ‘feels’ anyway- bloody carols) and I had some of that Could-it-be-my-last-one fatalism. Felt like I was lurching moment-to-moment with fears/questions/random things to deal with (eg school runs with a DC obsessively playing a Jeff Buckley track on repeat that bangs on about feeling mud being put over your head (burial-style) - FFS - in dingy grey midwinter before I’ve had a shower - and a coffee) and also life in general (said DC has some struggles, I went down some very dark holes about dying and her being unequipped to navigate the world without me etc, other DC has a lot on at a key life stage etc)

I dropped some balls at work (at least I thought I had, apologised and fawned and then realised I hadn’t and should have stuck up for myself more 😬🙄) which sent me into a tailspin, it’s a newish job that I love and want to carry on doing, in my head I’d been sacked whilst terminally ill etc etc etc

They told me to lay off the oestrogel to avoid ‘feeding’ this bastard thing (still doesn’t have a name, maybe This Bastard Thing will do) so I’ve been plunged back into peri symptom hell to boot (see work meltdown above 🫣😬)

In short, I have had myself dead and buried (and also been given a new lease of life by eventual good news) about 86,000 times in the past couple of weeks.

It’s fucking exhausting. I think eventually the adrenaline ran down, and I have annoyed myself so much with scenario planning that I have finally internalised the ‘one step at a time’. .

DH has been brilliant, Service Love mode ongoing and he’s being solicitous and emotionally honest in a way that he isn’t habitually. He’s hiding the amount he has on at work and is keeping the wheels on a few familial carts I would usually be much more engaged with but just haven’t had the bandwidth.

I’ve been hiding a bit but a (very) few people know now, which has also been weird - every person I’ve told, it’s like it necessitates a round of ‘of-course-this-is-a-huge-worry-but we-must-take-one-step-at-a-time/face it/work it-out-come-what may’ and although I am hugely grateful for the concern (I know I sound like I’m not) and appreciative that there’s not much for it but platitudes when this happens and the situ is unclear, I’ve found the iteration of the same lines irritating, and like we should get it out the way so we can have an honest conversation. I’m conscious I sound like an ungrateful wretch.

I had the MRI. It was horrible. I’m very hardy usually but I cannot bear feeling trapped. I can’t even go in a sleeping bag. I was also raised to cope with things generally and not make a fuss (an approach I often joyously and wilfully ignore, but not in an NHS setting 😆) and I emerged with a banging headache, clenched jaw and had to get the hell out of there. . Couple of big gulpy breaths in the fresh air later I reminded myself of work I did once with some clinicians in Africa who were trying to ameliorate the suffering of people with terminal illnesses who had no access to diagnostics or treatment or even basic painkillers and got A Fucking Grip.

Thanks to some sage advice on here, I chased my GP to get some idea of when and how I should expect biopsy and MRI results (why?! Why is this even necessary?!?!!!) and have been told I should get biopsy ‘in about three weeks’ (so this week) and MRI imminently, they will call or write - couldn’t say which, or when 🤷🏻‍♀️🤷🏻‍♀️😬😬😬🙄🙄🙄🙄😳😳😳

DH has recently got health insurance via work so I have now also had a private US and another MRI to see what they say. I feel both relieved and extremely guilty about having access to that. I am a pretty strong advocate for myself and to be honest the NHS communication side has been woeful to say the least. I have an appointment to get those results tomorrow.

I remain hopeful that the grim fibroid option is most likely (🤮🤮🤮🤮🤮🤮 but 👍👍👍👍👍)

Any which way I look at it, it’s all going to have to come out, isn’t it - womb, ovary and tube on at least one side, then why not get the other ovary/tube out too. . I doubt they can get it out keyhole so I’m bracing for major surgery, come what may. . .

Thank you all again for your kindness and thoughts and for checking in ❤️❤️ The advice and love has helped keep me sane. I’ve re-read all the posts many times already ❤️❤️❤️❤️❤️

Great to hear from you, OP! I'm sorry you have had such a long wait already. You have eloquently described how awful that is but I still can't begin to imagine. Don't you dare feel guilty about accessing private healthcare, especially when your NHS appointments have been pretty pitiful to date!

Try not to worry about the surgery. It sorted of sounds like it will resemble a C-section? I'm glad DH is looking after you so well!

Wishing you good news this week, and a lovely festive season.

Good to hear from you OP, have been thinking of you. Thank you for the update and you continue to sound like you are doing an amazing job, balancing the feels with an honesty , self awareness and humour that many lack.
Have everything crossed for you xxxxx

I'm awake. I can't nod off tonight. I get my 12month cancer scan results tomorrow and I am overthinking.
I just wanted to say that you're in my thoughts and that I hope you receive good care like I've experienced. (I'm metastatic breast cancer that's in my bones. Fun times!)

I generally hope for the best but prepare for the worst. I find that a helpful approach so I'm not in shock and unable to take in what they are saying. I also take someone with me to consultant appointments as a second pair of ears for the bits I don't always remember once I get home.

Hopefully you'll have a plan of action soon and that will ease the worry of the unknown. Best wishes x

Wishing you all the luck in the world for tomorrow and the coming weeks, OP. I’ll be thinking of you, and we’re all here cheering you on

Hello @GiveOverWillYou . I’m so sorry all this is still hanging over you, without any clear way forward.

As you say, it’s probable that you will need a complete hysterectomy. I have the t-shirt for that, having had removal of a 10cm x 6cm tumour, complete hysterectomy and removal of omentum. Looking back, it wasn’t terrible, it’s doable. If you want any info or advice on what to expect, please ask me.

Sending love and strength. You will get through this. 💐

Just wanted to say that I remember the time I removed the Fucker (that was his name and not sure why he was male ?) each night - mentally I performed surgery at skill and speed the NHS are not capable of.

Two of the worst things were the fact that I was not in control and the Fucker was an ever present constant that I wanted out.

Many years later the Fucker is long gone - along with lots of other bits - but I was able to rationalise it as a war against the Fucker and losing stuff in battle doesn't matter as long as you win the war.

Crossing everything that u find a name for yours that you are able to channel all your feelings toward and let it all out.

All the best to all of you awaiting results. I hope they are so much better than you could dream of. Will be thinking of you all x

@GiveOverWillYou Hoping for good, good results for you. Fingers are crossed, heart full of hope. Prayers sent ♥️.

I had mostly keyhole (robotic) for a total hysterectomy last year and, what ended up being a small bowel resection to remove a 10 cm tumour. I have a 5cm vertical incision below my belly button. After surgery they thought it was benign.

My surgery was private. I was declined for a 2 WW NHS appointment as they said it was likely endometriosis based on US findings. Instead, it ended up being a rare sarcoma.

Everything else you’re dealing with and feeling sounds incredibly familiar, including work being horrible. The wait is the hardest. I really hope you get good news. Thinking of you.

Oh OP I've only just seen your thread. This diagnostic bit is the worst, don't feel guilty about going private (I had cancer last year, and had excellent private treatment) - knowledge and A Plan is the thing, I find. Once I had that, I could cope with anything. to you.

I’ve been thinking of you! Sounds like you’re being very stoic. Like your loved ones have said one step at a time. I hope your results are ready very soon. Best wishes to you x

I hope you get some good news. The wait must be unbearable xx

@GiveOverWillYou

I have had a similar experience-including the tilt! I have pre cancerous cells.

Like you, I will probably end up having it "all taken away" as Les Dawson used to say but various complications with my innards mean that this won't be straightforward, so instead, I've had an IUD fitted and regular horrible biopsies.

Several times a day, I check for blood-all ok so far- but my nerves are shredded.

I wish, I wish, that my innards had been straightforward and that it had all just been whipped out and I'd spent three months lying on the sofa watching Downton Abbey and eating chocolate while I recovered.

So, please do try and re-frame this in your mind-out it comes and it won't darken your door again-no more worrying.

This message may be of no use but that's my experience and I wish you well.