Suspected ovarian cancer surgery Thursday - petrified

[Fragglerocks76]

Hello, first ever post… I’m going in for suspected ovarian cancer surgery on Thursday and I’m petrified. Complete hysterectomy with ovary removal. I’ve a 13cm complex cyst being treated like cancer. The surgeon has mentioned I may need a stoma bag if they have to cut pieces out of my bowel, I can’t eat the day before surgery (diabetic so worrying about that) and have to take laxatives the night before to clear bowel. Is this normal to be told/go through? He’s no idea of the size of the cut at this point as he’s going to look everywhere for grains of sand (cancer cells I guess?)

Please can someone reassure me that they are giving me the worst case scenario here. CT scan was inconclusive but my CA125 is 200. Surgeon thinks I may have some endometriosis going on too. Thanks.

Hi...
I can't speak from personal experience, but my 87yr old mum had a radical hysterectomy this time last year. Her cyst was 18cm x 13cm, and scans were inconclusive... her cyst was benign, she did have a catheter in for a while, but she is now fully recovered and no follow up needed.
Before surgery she was told there was a chance they may catch her bowel trying to remove the cyst, but they managed to get it all without any damage to anywhere else.
Hope everything goes well on Thursday - and try not to let your thoughts spiral out of control - easier said than done!

Hi OP. I had the same surgery a year ago (Wednesday in fact!) for the same reason. I had 2 complex masses which did turn out to be ovarian cancer. Low grade.

They can’t commit to the incision size as some OC can seed, and they may need a wider incision in order to remove all visible disease. I was fortunate and have a c-section to belly button scar. It really wasn’t so bad. I can talk you through exactly what happens if you like? If so just reply and I’ll write it up.

I was also warned re stoma but that is very unlikely. An enema/bowel clear the day before is perfectly normal, you will also have to drink some absolutely vile glue code drinks to get the best recovery.

I know how frightened you are. I am sorry you are in this position. As someone who has been there I will say just take it day by day, take a peg to peg your phone charger to the sheet, lots of snacks, peppermint oil to ease constipation and an eye mask (I had a headphone/eye mask combo with was great) and some nice cotton nighties. And massive pants! M&S cotton full briefs in a size up from your usual are a good shout.

Happy to answer any questions.

*glucose!!

Thank you so much for replying. That’s amazing about your mum having such a big op and so pleased she is fully recovered. I’m hoping they are working on worse case but I can’t get waking up with a stoma out of my head. 😞 I’ve never had a general before either so my mind is all over the place! X

Same here, had a radical hysterectomy 2 years ago after OC probable diagnosis (which turned out to be correct). Definitely agree with the tips above! Also headphones, as hospitals can be noisy places - worth trying a white noise app like Noisli to shut it out if it bothers you.

You will definitely feel pretty ropey for a few days. Take ALL the painkillers they offer and ask for more if you are still in a lot of pain. They probably won't let you out until you've had a poo, but if that's getting at all uncomfortable ask for a glycerin suppository.

Things like having a hook on your washbag and nice-smelling soap make a huge difference too. The first shower/wash after major surgery is absolutely amazing!

Oh, and when you're taking the bowel clear-out stuff, my tips are: 1. It fizzes up quite violently so mix it in a much bigger container than you think it needs, and 2. Don't even think about doing anything that involves you being more than about 2m from the loo. It's not painful but it is quite spectacular.

Re the diabetes, I would check with them what you are supposed to do because if it's dangerous for you to fast then there will be a workaround.

Best of luck to you!

Thank you so much for the info @AGreatUsername ! That’s really useful to hear that you were told that too. Im so sorry that you went through it also as it’s been the most horrendous time and I’m such a worrier which really doesn’t help! Always looking on the dark side…

And thank you for the tips - that’s really helpful. I really don’t know what to expect at all aside from them having a good look round and ending up in intensive care! 🙈 I’ve bought some peppermint teabags today but good call about the peg and eyemask thank you. I can’t recall much from the meeting with the surgeon as I think I lost it when he started talking about stomas. My dad had one when he was diagnosed with bowel cancer and he was never the same again (though this was 30 years ago) it gave him another 8 years with us.

I was really hoping you would reply as I’ve seen you post on some other threads (probably old ones too!) and i really hope you are fully recovered. Thank you! Xx

@SqueakyDinosaur thank you for your info too. That’s really useful about the laxatives fizzing. I’m dreading taking them! I’m not eating much at the moment with worry so the not eating part isn’t going to be a massive issue but it’s the concern about going low. The nurse on Friday said she will get back to me but hasn’t. I’ll have to chase! I’m shocked that I haven’t been armed with more information from the hospital tbh. At the pre op assessment they told me I was having completely different surgery and would only be in one night!! Hmmmm…. Xx

@Fragglerocks76 I am doing well thank you, I finished chemo 6 months ago and am NED now, hoping it stays that way!

Do you know what bowel clearance they will use? A lot seem to have the home drinks but I was asked to admit myself the night before and was given an enema which was vile, but worked within a few minutes and luckily only needed one toilet session 😅

For the surgery itself, I was given a spinal block/morphine tap which was the worst bit. The lovely anaesthetist then offered to sedate me as I was so scared, I agreed and that is all I remember until I woke up! I was in a lot of pain when I woke up but weirdly it was all in my lower back. I remained in recovery dosing myself non stop with morphine for about an hour, but after that initial blast I only had IV paracetamol and the pain was really very minimal.

You may have local anaesthetic tubes into your tummy, I did, these remained on via a pump for 24 hours. I was concerned about this being turned off as I had no pain, but actually even when it was off I still had only very minor discomfort. I was very very weak and pathetic, hunched like an old lady (at 36!) for a good 48 hours. Squeaky is right, that first shower is HEAVEN. They did give me a bed bath 1 day post op which was so wonderful as it was SO hot on the ward and I was then able to put my clean pants and nightie on and felt so much nicer.

You will likely need to show them you can inject yourself with the anti clot stuff before you are discharged, it is not wonderful but also not awful. Top tip, you pinch a big hand of flab to inject, DO NOT rub it! Just remove the needle and don’t touch the site. It stings so badly if you rub it!

I have obviously got a scar now, but it’s so minimal! If you want to PM at any point feel free 😊

@AGreatUsername the drinks are called Plenvu and the sachets are huge! I think I’ll be on the loo all night. One at 6pm and then another at 8pm I think - need to double check.

That’s amazing that you are all clear. Did you get the diagnosis prior to surgery? They just don’t know what is going on with me until it’s out and tested. I only went to the docs thinking I was peri menopausal as I had irregular bleeding. Next minute here I am. 😩 no symptoms at all apart from pain now (possible ovarian torsion as they can’t see my ovary on CT scan). It really needs to come out. The surgeon did say it’s not advanced which is one relief though doesn’t make it any easier wondering what they will find once in there…. X

@Fragglerocks76 this is the same drink you have to take before a colonoscopy. It's not pleasant but it doesn't hurt. Just stay home and near a loo! It also helps to eat low fibre foods for 2 days before - so no meat or fruits if you can.

I've not had this surgery so I can't comment but good luck!

Full hysterectomy in September, huge ovarian cysts - cancer ruled out by an MRI. I had stage 4 endometriosis, was also warned about risk of needing a stoma. Surgery went well, no stoma, no pain - at all! A bit wobbly/felt vulnerable for a couple of weeks. Then absolutely fine since. Wish I’d had it done years ago! If you’re offered a spinal anaesthetic as well as the general - take it. Good luck you’re in the best hands.

Btw the bowel prep is probably the worst bit, you may turn into a human pressure washer for a while! It’s not unbearable though!

No, until histology results post surgery they wouldn’t confirm. It took 3/4 weeks. It was a LOOOONG wait.

It’s great they can’t see anything else if it is cancerous. I unfortunately was found to lymph node involvement which did not show on CT so was staged at 3a. I also had no symptoms bar a few weeks of bloating and bowel changes! OC is a real sneak.

Thank you everyone. It’s all been really helpful. I’ve had a look up about the foods to avoid tomorrow now so that’s a huge help! @AGreatUsername yes I think I’m in for an agonising wait too unfortunately. I know they are going to check one lymph node as it’s slightly raised but still in normal limits according to my husband… hopefully it’s not anything of concern. Xx

This may or may not be helpful to you, OP, but I went into it pretty convinced that it was cancerous (and it was), and so to me the surgery was putting something right.

Mine was very early stage (1C) and only diagnosed because I had an accident and they picked it up on a torso scan. I had chemo afterwards (starting about 3 months after the op), and I am NED (no evidence of disease) now, and very much hoping to stay that way!

For more suggestions of sensible foods for tomorrow try googling "Low residue diet". If you're normally a healthy eater this is your chance to eat ice cream!

I can't add anything, OP, except that I wish you every good luck and will be thinking of you

@Fragglerocks76

I'm sorry you're going through this 💐

I can't add a lot. My mum has regular colonoscopies & struggles with the 'drink' & consequences, we always line the car seat with a heavy plastic bag & towels as it helps to stop her worrying about any accidents. She also takes wipes & a change of clothes.

I'm T2, are you 1 or 2? Both times I've had operations have been emergencies, no time to panic about the T2!

I was surprised to 'wake up' with the Dr & Nurse arguing about me, that was disconcerting, but the surgeon (?) put his foot down & said I was staying in recovery until HE was sure I was ok. So that was reassuring! I was surprised to be getting both insulin & glucose.

im usually 'diet controlled' & they really pushed medication in me after the op. I said id accept whatever they thought necessary when I was under their care, (as the food in hospital is a continuous carb fest) but NO I wasn't going on medication after I left, I just needed to get home & back into my routine & it would be fine (which I did & it was). But I had to say 'fine, prescribe what you like, but I won't be taking it'

I didn't have a stoma but I woke up with a catheter in which I hadn't been warned about & that was a bit disconcerting

Best wishes for Thursday, I'm sure you'll be fine & they'll do all they can for you!

Can I please ask you all what your ovarian cancer symptoms were? I’m about to approach my GP but my symptoms seem quite generalised so I’m not sure

Hi OP, hope your surgery goes well.

It might be worth taking eye mask and ear plugs with you as hospital wards can be very noisy and bright.
In my experience the surgeons are always thinking of the worst case scenario!
I'll also be thinking of you and sending positive thoughts!

Thank you @SqueakyDinosaur I think If i already had a diagnosis I might be able to think that way, but not sure. I’ll just be glad when it’s all over tbh. Amazing that you are clear now!

@SaltyCrisps thank you! 💕

@ThursdayFreedom thank you. I am type 1 since 13 so over 30 years. I know about the catheter just dreading waking up to a stoma but hopefully that won’t happen…

@BHRK i only went to the docs with some abnormal bleeding thinking I was peri menopausal. Next minute, CA125 blood test is elevated so sent for urgent ultrasound which led to urgent CT scan and now op. No symptoms at all otherwise but its not known as the silent killer for not reason…. 😞 please get checked if you have anything that’s just strange to you. X

@nowtygaffer thank you so much. Yes need to sort eye mask and ear plugs. X

Thanks everyone. I feel a little calmer this morning, but I’m sure it will ramp up again when I start to think too much. 😬😩 xx

@Fragglerocks76

My Dad would have said 'Don't think too much then' 😂😂

scroll through & read some of the monumentally stupid threads on here!! That's definitely distracting & wastes a lot of time!!

take care lovely
xx

I had to have a full hysterectomy under the two week pathway - mine actually turned out to be a massive fibroid and I was given results within 5 days.

Talk to them and tell them you are nervous about the anaesthetic but honestly the drugs are so good now and they use memory drugs on you too.

Buy Tena pants or similar to travel to hospital in if you are worried.
I have found the NHS staff so reassuring and kind with anything like this.

They have to give you the worst case scenario so it is hard not to worry.. I remember reading that they have to lift your bowel out manually to get access so I imagine this is why it is mentioned. It was all I could think of when the handsome Italian intern came and spoke to me afterwards 😂

You may also want to enquire about what kind of pain relief they use afterwards as my doc used an epidural so I was alerted beforehand. Wishing you the best of luck !

@SqueakyDinosaur my dad would have said the same I imagine! 😂

@SaxSick thank you. I’m not really eating much tbh so hopefully there won’t be much to clear out! 🙈 I guess they will hopefully tell me what’s going to happen Thursday before the op. Just want it over with now.

@AGreatUsername how did you cope with the menopause? Can they give you anything if you have to have chemo? Thanks x

Op, I had what’s called a staging laparotomy after the discovery of a 6kg ovarian cyst. I was then diagnosed with stage 1a mucinous ovarian cancer and haven’t need chemotherapy.

My surgery included an incision from just under my breasts down to my pubic area and my cyst, uterus, ovaries, cervix, Fallopian tubes, appendix, omentum and some lymph nodes were removed. I also had washings done to check for stray cancer cells. Physically I recovered from my surgery very quickly, was out for breakfast on day 9 but mentally was a whole different story entirely.

all the very best to you going forward.

Sorry, just to add I was 62 when this happened 2 and a half years ago. I have regular check ups.