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Original poster

Suspected ovarian cancer surgery Thursday - petrified

86 replies

Fragglerocks76 · 12/06/2023 12:06

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.

OP posts:
nowtygaffer · 16/06/2023 19:49

So sorry to hear this Fraggle. Thinking of you x

LifeIsGreatForUnicorns · 16/06/2023 20:15

So sorry to hear this… hope you are currently pain free and that the treatment goes well x

FatCatBum · 16/06/2023 20:52

Are you on facebook? There is a fab support group called hysterectomy sisters on there

FatCatBum · 16/06/2023 20:53

Just seen your most recent update, I'm so sorry

SqueakyDinosaur · 16/06/2023 21:52

OP, sending you lots of love. Don't worry about still being in ICU - they kept me there for 24 hours after the op too, it's so they can monitor you really well.

Where are you in the country? (vaguely) If you are anywhere near a Maggie's Centre then when you are back on your feet I recommend getting in touch with them. Macmillan are also great for advice and information.

Needapadlockonmyfridge · 17/06/2023 01:15

I am so sorry @Fragglerocks76 , that must be a heck of a shock.
I hope you can get out of ICU soon and get started on your treatment plan xx

Wallywobbles · 17/06/2023 05:42

Wising you all possible luck with your treatment and recovery

SaxSick · 17/06/2023 16:26

All the best from me too x

DumbledoresWand · 17/06/2023 19:44

So sorry to hear your news @Fragglerocks76 ... you must be reeling. Hope your recovery from surgery is a good one, and treatment is positive x

Vintagecreamandcottagepie · 17/06/2023 22:40

How are you @Fragglerocks76

Tilllly · 17/06/2023 22:50

Oh bugger, that's rotten, I'm so sorry
How're you getting on?

Needapadlockonmyfridge · 18/06/2023 07:04

How are you today, @Fragglerocks76 ?

SqueakyDinosaur · 18/06/2023 09:36

@Fragglerocks76 hope today you are out of ICU and recovering from the mental and physical shock you've been through. Even when you think you're prepared for something like this, it still takes your legs out from under you.

I expect that tomorrow will be the first time there's a full ward round. Make sure that you don't let the medics rush you - if you have questions for them, maybe write them down so you don't forget them. You've just had major, complex surgery and I would hope they will want to spend a bit of time with you.

We're all here when you need us.

Theredfolder · 18/06/2023 13:22

All the best from me also, I’m so sorry Fragglerocks76

Original poster
Fragglerocks76 · 18/06/2023 13:55

Thank you everyone. Got out of intensive care yesterday afternoon and am up walking around today cannula and catheter free! Docs have said they will assign me a counsellor which I def need but they seem pleased with my progress and said things will feel like two steps forward and one step backwards.

Having up and down days at the moment, more down unfortunately than up. I can’t bear the loneliness overnight until my husband can come in. Thankful to be in a side ward with my own bathroom though!

Also struggling to come to terms with what stage it may be and what this means in years left. Also seem to be concerned about it coming back and living in constant fear but I guess the counsellor will help with overcoming those fears?

Thank you again for your words of comfort, it’s very weird how the kindness of complete strangers is a help. Xx

OP posts:
soundsgreektome · 18/06/2023 14:04

Thinking about you and sending love x

nowtygaffer · 18/06/2023 16:54

Hi Fraggle, sounds like you are doing amazingly well! I know hospitals can be lonely places, the side rooms are great in some ways but very isolating too.
Feel free to ignore me but one thing that life has taught me is just to take everything one day at a time. I remember reading something once that we don't live in tomorrow only today. Try not to think too much about the future. None of us can control it however much we kid ourselves we can. Like I said feel free to ignore me 😁

Wisenotboring · 18/06/2023 19:01

So sorry to hear your news. Take your time with the dr tomorrow. Can your husband come in to be with you. Take one day at a time and don't jump to any conclusions about prognosis yet x

whatisforteamum · 19/06/2023 17:25

Hi Fraggle and I'm sorry to read yòu update.what a huge shock.
I haven't had OC but my mum has.Primary peritoneal stage 4 treated as ovarian. Her ca125 was 9,000.!
Platinum chemo worked on halving then getting it to a low level.
She had major surgery when it returned and more chemo and I'm pleased to say is doing ok 16 years since diagnosis.
I hope this positive story gives you some hope.

Sagaris · 19/06/2023 18:19

Hope you are doing OK Fraggle, and that you are getting some useful info for your treatment going forward.

Brrrrrrrrrrrr · 19/06/2023 18:48

Hi OP, I’m very sorry to read your update re the confirmation of OC. My Mum had Stage 3C OC. Everyone’s experience is unique but some grains of invaluable advice I wish we had been aware of from the start:

Use every resource offered, Macmillan are fantastic, take the counselling, the leaflets, literally everything you can. The same for your DH.

Eat a healthy diet, cut down on alcohol, quit smoking, rest up, get plenty of sleep, drink lots of water. Basically give your body the weapons it needs to get you through the treatment and recovery.

Ask all the questions you have, see if your DH and family have questions you may not have considered. Knowledge is everything. Use the notes function on your phone. My DMs response was to shut down and block out any talk that didn’t include a fairy tale ending living happily ever after, which was no doubt her coping mechanism and absolutely understandable but in my opinion hindered the necessary support we could give her.

Don’t dismiss new symptoms or changes to your body, tell your treatment team everything.

Vintagecreamandcottagepie · 19/06/2023 23:58

Keep posting when you feel able. We're here and we care x x

SophiaElizabethGrace · 20/06/2023 00:02

Thinking about you. I hate the thought of you feeling lonely over night after such shocking news. I'm not sure if it's helpful to post or not but if you do want company, there will always be someone here ready to listen.

EasyPeelersAreNotSatsumas · 20/06/2023 00:18

And I'm here too 💐

PollyThePixie · 20/06/2023 05:38

Fraggled, it’s ok to be absolutely terrified.

You don’t have to be brave. And you certainly don’t have to minimize how you feel to anyone around you including Drs. My children had a psychiatrist involved with me the evening of the day my problem was picked up for the first time. I just couldn’t cope. I had a total mental and emotional collapse. I’m not ashamed of it and I accept that those with cancer who don’t become as unwell as I did don’t really understand it either. But it’s ok. Not all of us can hold it together and remain on the right side of sane. I certainly couldn’t and i hope knows no this can help someone.