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

Oh, @GiveOverWillYou . I’m sorry your GP was so tactless. 😢 I really hope it’s not as serious as it could be. Thinking of you.

Best of luck to you OP and will be thinking of you x

Best wishes to you, OP. I hope that whatever it is it can be treated easily. At least they are taking it seriously.

What a terrible way for your GP to share the results with you, I'm sorry she was so tactless duringsucha delicateconversation. I hope you'll be seen very soon and have the answers that you need. Thinking of you

Any growth is likely to have a potential cancer warning against it but any gp worth their pay knows that the majority will turn out either to be benign or easily removed (mostly both). They really ought to say that immediately after they've found a growth. Most growths will be removed because they arent supposed to be there and some benign ones might occasionally become cancerous if left long enough.

So although you are probably going to need some sort of procedure to remove it the worst part of all this is likely to be the waiting to find out exactly what they propose doing.

This was what was explained to me by the doctor who scanned me initially.
I'm horrified that the OP had to endure her GP telling her this news so badly.

I'm waiting for a biopsy appointment myself now and I'm fully in agreement with this comment - waiting is the worst part, even though the likelihood is that whatever is growing where it shouldn't is not going to be cancer.

My mind keeps saying "what if......?"

I'm sure @GiveOverWillYou is feeling and experiencing that, too.

Thinking of you op. Your head might be swirling will all sorts of thoughts. I hope you are managing to be able to do things that can help you relax...on and off.

Oh @GiveOverWillYou i’m so, so sorry to read your update ☹️
I had a recent encounter with a doctor just like this, why don’t they just think before they speak?
Try and take heart with my experience, and lots of others on here.
When I was going through it with my tumour diagnosis I found once I had seen the consultant and we had talked through the plan of action I felt a lot calmer.
I really don’t like feeling like I’m not in control.
My other thing was feeling exactly the same as I did before the test results, but potentially being seriously ill. I found it hard to get my head around that.
Only if you feel able of course, please keep us updated with what is happening, if you need to talk there is always someone awake, I suffer from chronic insomnia and hip pain from my severe osteoarthritis keeps me awake a lot of the night so I’m often browsing MN in the early hours of the morning!
Take care x

@GiveOverWillYou another handhold coming your way, and company - in May I was put on the 2WW urgent referral pathway for suspected ovarian cancer, and in June I was scheduled for surgery, to remove the cyst and most likely the ovary it is attached to, on the urgent list. Well I can only assume they don't think it is that urgent as I am still waiting! I try not to think about it too much. Reading above about being the squeaky wheel makes me think I should call the hospital, again, on Monday. @GiveOverWillYou - hope you get reassuring news from the mri (which I assuming you will be having!)

This is how I’ve felt with my two breast cancers . Absolutely fine not tired ,nothing if it wasn’t for the lump itself !! Then comes chemo and its a different story ( but worth it in the end)

Please do absolutely phone them.That’s just flipping outrageous, it may as you say be that they’ve decided its not that urgent but they should confirm that. Best wishes x

I’m late seeing your thread and story but just wanted to send you so much love, @GiveOverWillYoux

Another vote for @fourmonthstogo to ring on Monday for an update ...
I got lost in the system during lockdown and made things worse than they could have been by not chasing and assuming that no news was good news. All sorted now with the help of an excellent GP receptionist who showed more empathy than anyone else in the system!

Tough day. As all the previous wonderful posters have said it all, will add My unmumsnetty hugs to the pile x

Just wondering how you've been doing OP.

Same here. Been sending you best wishes

And here.

Hi everyone

Thank you for all your wonderful messages since I last posted on Friday. I’ve read them all and taken such heart from the advice, hugs and handholds. I really appreciate the time people have taken and the thoughts and prayers.

I had the bath, I drank the wine, I watched the telly. I think I was so exhausted that my head just went blank and I went numb which was probably for the best. I didn’t get the best night’s sleep but it wasn’t as bad as it could have been.

It’s been a bit of a rollercoaster since. Woke up Saturday feeling high as a kite - very ‘roll up your sleeves’, ‘you’re not dead yet’ etc

Luckily, DH and I had the welcome distraction of a night away from home which involved seeing lots of old faces and a kitchen disco, which was a very welcome distraction. I told one, close friend and swore her to secrecy.
It was good to completely forget about it for a few hours.

Things have been very up and down since then. I haven’t slept much/well, which probably hasn’t helped things.

I spoke with my boss to forewarn her of appointments etc on Monday and she was amazing - kind, supportive - and took some work off me so I could take some time out on Monday afternoon. I thought I’d go for a long walk, read an improving book etc but in fact I just crashed on the sofa. I had a very busy work day on Tuesday which gave me somewhere to put the nervous energy.

The consultant referral letter came through for an appointment yesterday morning, so off we went. DH (who was very much the rabbit in the headlights on Friday) has gone into full Service Love mode and has been a sweetheart since, he’s being very solicitous, has done all the cooking (which he hates and isn’t very good at, so I usually do most of it, in exchange for him doing other jobs I hate of course, fear not Wise Mumsnet) He has stopped trying to fix it with platitudes after some further feedback 🤣He came with me.

Much as I might be reassured by the speed of the track, the appointment was pretty bad.

Despite having a very early appointment time, I wasn’t seen until late morning. Everyone there was seen upwards of an hour and a half after their appointment time. The nurses were great at keeping us posted on the delays but there was no real reason given other than the clinicians were ‘behind’

I didn’t mind so much as I’d taken the day off and I imagine the reason for the hold up could have been some poor soul being given bad news, but two people left because they had scheduled enough time for appointments with a bit of contingency but not hours and hours’ worth. . .

Anyhow - it wasn’t great. The consultant had no access to any of the records, referral or notes. An IT issue apparently. So she hadn’t seen the initial referral documentation, the ultrasound, the bloods - and had no idea of history, symptoms etc

So we started from scratch, in a rush. Thankfully I had the ultrasound report screenshots on my phone and the NHS app so I could show her the bloods.

I had been assuming that as a specialist, she would have seen all of that and be interpreting what the non-specialist GP and Sonographer can’t, from the info and scans she had, and that we would spend the appointment time with her explaining possible diagnoses and a plan to rule them in/out. Maybe some time for questions. None of that happened. She made some notes, said ‘so they’re saying it’s a fibroid or a tubo-ovarian mass, or something else’ - which isn’t news, and is in the scan report.

I went in there wanting an MRI which she did offer and order so that was good, and a biopsy, which I bit her hand off for.

More waiting for a (pointless but necessary) pregnancy test, and then more waiting for the biopsy. I shouldn’t moan I suppose, but it was hot and loud in there and there were a few ‘characters’ who were intent on turning the waiting into a shared group experience which I was just not in the mood for. Plus my period started a week early and came in storm-force, so I am bleeding a lot again and in a lot of pain which was making me grumpy.

The biopsy was grim. I have a cervix/tilted womb set up which always makes smears etc pretty uncomfortable and this was on the painful side of ‘discomfort’. There was an argument between two nurses because one hadn’t given me the bit of paper for ‘dignity’ and the other one was outraged about that.

The consultant and the outraged nurse were both very caring during the biopsy.
Afterwards the consultant couldn’t tell me how long the results would be, thought the MRI would be 10 days plus a week for results but couldnt really say. . I’ll get a letter apparently and she’ll go from there.

It all left me with more questions than answers.

Some wins -

I’m in the system (well, sort of, if the computers work)

Had a biopsy and the MRI is ordered.

Outraged Nurse was a wonderful, old-school, no-nonsense, bustling Irish nurse who reminded me of my very loved, very missed (decades later) Nana which I took comfort from. A ‘poor thing’ and a hand squeeze at an opportune moment is sometimes all you need.

Swift pub lunch with DH on the way home

The Not Wins -

I still don’t have an expert opinion on what it could be: I’ve had to work that out myself, and I am very much not a clinician. This has pissed me off. I could be worrying unnecessarily for want of a sensible, rational discussion about possibilities and likelihoods.

Horrendous cramping from the period/biopsy aftermath combo

Wondering why they’ve taken a random endometrial biopsy and not one from the mass (although I suppose they could do that after an MRI if they wanted).

In the absence of a consultant doing it, I’ve come up with possible diagnoses myself (yes, I know, I know)

Most likely - and everything crossed it is - a massive fucking deteriorating bastard fibroid, albeit one presenting in a very atypical way.

Less likely but not ruled out - one of a menu of terrifying womb cancers - if so, possibly one of the less aggressive high grade ones but possibly relatively locally-advanced given size/ what the US says/Eve Appeal and other info resources

I think anything ovarian is unlikely - surely if I had a tubo-ovarian mass/abscess the size of a grapefruit, I would be extremely unwell/septic/dead. My CA 125 is 12 down from 13 when they did initial bloods.

Before anyone tells me off, I know I shouldn’t be doing this - but I am left piecing bits of info together in the absence of someone qualified doing it for me.

Sorry for the long post. Thank you for letting me vent! I don’t want anyone bar DH and Old Friend IRL to know, for a variety of reasons, mainly to do with questions and fuss. We have 2 kids who just cannot get wind of it unless and until there is something concrete to tell them. It’s really helping me to splurge it all out and order my thoughts in this Thread

❤️

Good god OP I would be absolutely furious at that haphazard appointment! It sounds like you're doing pretty well at keeping a level head. The waiting is always one of the worst parts of these things because it allows time for the anxious brain to fill that gap with horrors. Best thing to do is to keep as occupied as possible x

Op, I could have written your OP almost word by word last year, but I was called back within 46 minutes.I was “fastracked” for a battery of tests. It turned out to be nothing so try not to worry until you need to worry.

You will probably be seen within the next 2 weeks, have a biopsy taken and be seen by several doctors but concentrate on the fact they just want to be thorough as they are required by targets to see you as soon as possible (the “fastrack” means seeing you in two weeks)

I hope the appointment yesterday was ok.

Thanks for the update. What a rollercoaster of a week. I was there a year ago, so remember the stress so well. Hopefully answers come quickly, but I know the wait is horrendous. sending strength.

@GiveOverWillYou what a nightmare appointment - so infuriating - important that someone gets to hear of how this leaves patients feeling (but I am not sure who or how this happens).

I guess you are really finding the positives (supportive partner, supportive boss, handhold from a supportive nurse). And yes, this is a safe place to vent and write it all down.

Onwards!

Obviously started reading the thread before you posted your last update. We have had the same down to the tilted womb. Bloody painful trying to put a camera in before the biopsy… I was given 3 shots of anesthetic that didn’t help and finally gas an air… they finished before it kicked in but I ended there for an extra 30 minutes literally in Cloud 9, so relaxed and not able to stand up but probably able to float away…

I hope you get some positive news but even if you don’t, try to remember that cancer research has changed outcomes massively over the years so even if it turned to be cancer, there is still a lot of stuff that can be done to stop it.

Oh OP what a mess, I'm so sorry you're going through all this. 💐

My aunt had an ovarian cancer the size of a tennis ball removed. That was 30 years ago, she's now almost 90!

You can have a very large ovarian mass and not be ill at all. I had an ovarian cyst some years ago that grew to the same size as a full term pregnancy. I assumed I was putting on weight for a long time (it was fluid filled so not 'hard' like a pregnancy).

It was removed, along with the ovary and tube and I've not had any problems since.