Ovarian cancer

A support group for anyone affected by ovarian cancer to come together, share experiences, and ask questions.

Ultra radical surgery - what to expect & in search of stories of hope

bluestar
Posted by

Hello there

I'm really new to all of this, so please excuse me if I'm starting a new thread that has been addressed by others already. 

My partner was diagnosed last week with high grade ovarian cancer, probably stage 3c (though I guess they don't like to say until all the tissue samples have been tested). But it would appear that the tumours have spread beyond her pelvis into the omentum, and last week the surgeon said he'd seen nodules on the peritoneum on the MRI scan, so surgery would include a peritonectomy. 

We are still 10 days away from surgery - symptoms such as shooting pains, difficulty eating and general discomfort from bloating and distention are getting worse seemingly by the day. I hope this is 'normal' - my partner is obviously worried that more intense or new symptoms mean that the cancer is spreading. However, the surgeon has said that the cancer will not spread before surgery. 

So I guess we just have to be patient and try not to worry too much ... 

In the meantime, I would be grateful for any tips people might have to manage the pain. A hot water bottle seems to work sometimes, but sometimes it's just too heavy for her to bear on her stomach.

In addition, if anyone has had any experience of this type of surgery it would be great to hear about any tips to prepare well before surgery and after surgery to aid as speedy recovery from what I can only imagine is a very traumatic operation for the body. Obviously, we're aiming for the wound to heal as quickly as possible so that chemo is not delayed (currently estimated to start 5-7 weeks after the surgery). We have also been told that full recovery from surgery will take up to 4 months.

Many thanks

 

Roobarb
Posted by

Hi there, I had my surgery April 2018 - it is tough make no mistake but you should get great care, I was in hospital for 6 days, high dependency unit for 3 of those, and they manage your pain very well. If they go near your bowel, then you tend to be in longer, up to 15 days, so maybe prepare for that but hope for shorter!  I had my op on 18th April & started chemo on 28th May which is pretty standard I think, chemo stops the surgery healing so they don’t like to do it too quick,  the bloating and discomfort that your partner feels now could be fluid, so the surgery make help.  It could also be anxiety, I had something similar before my op, and it was down to the terrible stress of the diagnosis. 

things that might help - from the womb group has a fantastic list of things to take into hospital, hopefully she might come on here and post it (it’s not the same op but her list still applies!)

 One thing that really threw me was I was given a choice of anaesthetic about an hour before the op, one of which was an epidural - I wasn’t in a fit state to assess the risks and options etc, so it might be worth asking your nurse at the pre op if you have one.  The anaesthetist running through the risks at that point did not help my peace of mind!

the other thing to bear in mind is that until they go in they can’t accurately stage you, it can work both ways but at least once they see what’s what, you know what you are dealing with, CT scans are not 100% accurate, especially if there is fluid about.  So try not to worry about spots & stage until your surgeon tells you what they have evidence for.

recovery from surgery can vary - I got told 1-3 months which was unrealistic, 4-6 is more like it I think.  But I was able to walk wee distances week 2 and generally potter but you are pretty much stuck in the house for a bit and really can’t lift anything for ages.  

Im not sure I’ve helped......the run up to my op seemed a long wait I remember, it gets weirdly easier once treatment begins, and you get on the hospital treadmill.

wishing you both the very best, I’m a woose, if I can do it, so can you!!!!!

Tania-Teapot
Posted by

Hi Bluestar and partner. 

I had a full hysterectomy 6 weeks ago tomorrow, I'm meeting with the oncologist tomorrow afternoon for the ongoing treatment plan.

What can I tell you? Everyone has different experiences however in the run up to my op I felt tired and often uncomfortable, I took painkillers, just paracetamol and ibuprofen, but I kept taking them regularly to take the edge off. I was snappy at times so be prepared to have your head bitten off! I didn't mean to be aggy but the effort of 'brave facing'i it gets tiring. I apologised often but I knew that my other half was my safe place, it's a back handed compliment!

The op itself was fine, I did have an epidural as well as a general anaesthetic, I came round feeling pretty good! I was happy and hungry. I had a slice of toast a few hours after but my mouth was so dry that I struggled to eat it. I had a catheter which was removed 2 days after the op, the following day I managed to get up into the chair, my blood pressure dropped quite a bit, I felt ropey but other than that I was really good. I had very little post op pain, I was offered oramorph but I genuinely didn't need it, I just had paracetamol. Wind pain was a git! I had peppermint capsules which were brilliant. I also felt quite sick but told the nurses who gave me anti-sickness tablets, I wish I'd asked sooner. I'm usually someone who bounces back quickly but I found this hard, the lady in the bed opposite was so much better and I kept comparing myself to her. I realise now that everyone is different.

I went in on the Wednesday and came home on the Saturday afternoon. Take a pillow for under the seatbelt on the journey home. It's a slow recovery but each week was a massive improvement,  I would improve for a couple of days then plateau for a day or two, then impove again. It's easier to look at a week than a day. I needed a lot of help on the first week, less on the second and with planning, the third week onwards I managed more on my own (travel kettle, small jug of milk in fridge, tea bags in reach)

The surgical menopause is also something to prepare for, I have a hand fan with me all the time. I have lots of hot flushes and have had a couple of night sweats. It's manageable. On the up side, no period pains, leaks and stocking up on sanitary products! 

Im going to be honest, it's pretty rough but not unmanageable or unbearable. Good support is essential. Little kindnesses were really appreciated. Also, everyone is different, but I have found that sometimes, you don't want to reply to all the messages, texts, whatsapps etc so having someone else fielding them off is helpful. Try to find a positive everyday, even if it's something little (one day mine was that I managed to get in and out of the bath tub to shower with no support, OH was in the room in case I needed him) Keep positive but allow her and yourself to feel bad or sad sometimes. Don't google, if you want to know something use reputable sources or ask on here.

Good luck, I hope all goes well. TT xxx

If the plan doesn't work, change the plan but never the goal!
bluestar
Posted by

Hello Tania-Teapot 

Thank you so much for responding and kindly sharing your experience - it's really reassuring to know that others have been through something similar with such a positive outlook. 

I hope that you are continuing to make a good recovery (sounds quite rapid!) and I really hope the consultation with your oncologist went well. 

Wishing you well for the journey ahead! 

Bluestar xxx

bluestar
Posted by

Hello Roobarb

Thank you so very much for your response and generously sharing your experience - full of encouragement and practical advice about managing expectations in case my partner will need longer in hospital. I will certainly mention the choice of anaesthetic - my partner has been told she will have an epidural, but I don't like the sound of her being put on the spot like that. A really good point about the staging - trying our best not to worry about new pain/increased pain.

I hope that the chemo experience was OK for you and that you're well on the way to recovery, if not already there a year on!

Bluestar xxxx

Arla
Posted by

Hi blue star,

sorry it's taken me a while to see the tag, I had some really bad pain before my operation (as an aside my pain after my op was nowhere near as bad as before it, not even close) and my best advice for that is to keep in touch with your partners medical team, they always had options for me, just make sure you get guidance on what can and can't be taken on the days leading up to the operation. Also, if your partner is taking strong painkillers keep on top of the bowels (again speak to your partners team to make sure you use the correct thing) I found prune juice worked well to get things moving and bananas helped me when they went too loose (sorry for tmi but it's difficult to get control of the bowels when they stop moving). My most effective pain relief did seem to come from hot water bottles, sometimes one at the front and one on my back, in the hospital recovery ward they had heated blankets, that might work well for your partner if she can't take the weight of a bottle, you could heat a blanket or towel in the dryer, they gave me them folded over into a water bottle size.

In terms of the operation, i think ear plugs are handy as hospital is so noisy, I liked lozenges as I woke with a really dry throat that was difficult to clear and windeez for the post op wind, it's quite uncomfortable. Someone else mentioned the cushion for the car, it's great at absorbing the bumps, I also used it to get up and down to hold everything in place. They might want your partner to wear surgical stockings for a while, see if you can get a spare pair, it's a faff to wash and dry them ready for each new day, I had mine six weeks. Finally is the bowels again, keep on top of them, hopefully they will have something handy in hospital to help but I wouldn't wait more than a couple of days to take action, I waited four days and it wasn't good.

best of luck to both of you, I didn't have such extensive surgery but I was surprised at how well I felt after my operation.

lots of love

xxx

bluestar
Posted by

Hello Arla

That's such great advice thank you! I had been wondering about prune juice ... I hope that you are well recovered and fighting fit now! 

xxx