Ultra radical surgery: Has anyone had this on... - My Ovacome

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Ultra radical surgery

Rosado22 profile image
21 Replies

Has anyone had this on here?

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Rosado22 profile image
Rosado22
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21 Replies
Mammi profile image
Mammi

So sorry that you find yourself in this situation but be assured that you have come to the right place for good information and support from others that have been through the same.please feel free to read my history! It’s a scary place to be in but you are now in safe hands so asks lots of questions, keep a diary? & most of all eat well ,sleep well & look after yourself! Now is when your inner strength will surprise you 🤗Sending hugs Deex

Saintgermain profile image
Saintgermain

Hi Rosado22,I had what we call in the states radical debulking they pretty much take everything about a 7” vertical scar I didn’t have to have a bowel resection everyone’s surgery is different mine wasn’t too painful was bad the first night I was in hospital 4 nights you have urinate and have a bowel movement before they’ll discharge you. Best of luck

Rosado22 profile image
Rosado22 in reply to Saintgermain

Is this including work on the diaphragm?

meaty profile image
meaty

if you mean debulking surgery . well I am going hospital next week. i am having, hysterectomy. pelvic peritonectomy, cholisytitectomy. Removal of any metastatic disease (debulking ) , i could have a stoma ,as there could be damage to my bowel ,also my bladder .it is a case of what I will wake up with or without.

I have been told anything from 4 to 9 hrs in surgery. I am scared but it has to be done as I have low grade serious carcinoma. which chemotherapy isn't as effective ,

get as much information as you can , I have found it helps . wishing you all the best . I start my isolating this weekend

Trickysite profile image
Trickysite

Last October, Had 10 hour Surgery with about 6 organs removed, 5 days in intensive care, and 5 in ward. Pain so well controlled that I didn’t have any! Wonderful care. 6 weeks of feeling so exhausted I stayed in nighties. Otherwise, fine. Take courage. You will be ok.

meaty profile image
meaty in reply to Trickysite

thankyou xx

Helvelyn profile image
Helvelyn

Hi there 😊I had my surgery in September for 3c OC and had peritoneum omentum ovaries appendix omentum removed. It had nodules on the bowel which he managed to scrape off.

You will be ok. I had an epidural for post op pain which worked well for me.

The worst part was trapped wind tbh. xxxx

All will be well! Try not to worry! I had ultra radical surgery in early February 2021 at age 66. Around 11hours in surgery, scar 10 inches long from pubic bone to breast bone, the surgeon’s report of what she removed ran to a side of A4.

Best advice I received was: Build up muscle strength as much as you can before hand with lots of protein and exercise. Drink plenty of water. Don’t despair about how weak you feel afterward: just don’t give up… keep moving even though it is hard to.

Allow at least six weeks recovery time before expecting to feel close to your normal self. I was only in hospital for 4 nights and didn’t need any pain killers once I was home. I’ve been fit and well, back to normal for a whole year now.

Wishing you all the very best

Fiona

Rosado22 profile image
Rosado22 in reply to rightfromthestart

Did they take out your gall bladder and half of your diaphragm?

testarossa71 profile image
testarossa71

If you mean debulking surgery, then yes. I had my ovaries, fallopian tubes, womb, omentum, appendix, part of my spleen, all of my sigmoid colon (I now have a colostomy). They ended up leaving what they called a 'carpet' of cancer on the underside of my stomach, and many lymph nodes in my back are 'hot', but they can't remove. My tumour was around 6kg, plus the weight of the rest of the organs. I was in surgery around 8hrs. I was in hospital 2 weeks, then a hospice for two week, and it's taken me just over a year to feel anything like 'normal' again. Eat, sleep, and exercise as well as you can in the run up to the surgery. And if there is anything at all that you are unsure of - get them to explain it again, and again until you are fully informed and are able to consent. Wishing you luck x

Rosado22 profile image
Rosado22 in reply to testarossa71

Did you have any chemo first?

testarossa71 profile image
testarossa71 in reply to Rosado22

No. They were going to, I think, as my tumour was verging on too large to be safely operated on. But I had two emergency admissions because of the pain that caused (it was growing very very rapidly), and about a week later, I was on the operating table. Chemo started around 6 weeks later so my body could recover a bit. Hope this info helps, but please ask if you need anything more. Please do grill your consultant though - they can answer all of your questions and if you don't understand the terminology or logic of what they're planning to do, then get them to clarify. Thinking of you x

Rosado22 profile image
Rosado22 in reply to testarossa71

I’m not looking forward to the meeting tomorrow, but will go with my head held up high.

testarossa71 profile image
testarossa71 in reply to Rosado22

Will be with you in spirit. Please let us know how you get on, if you feel able. x

Rosado22 profile image
Rosado22 in reply to testarossa71

He said it was high grade serous stage 3 oc and got chemo appointment video call this Monday. He thinks things will shrink before next op . I overdid it with walking though - and having lunch out and more walking and the pain I had yesterday is a more intense version of the subtle pain that was the start of all this, that I thought was musco skeletal and from a fall three years ago.

AuntyOrange profile image
AuntyOrange

Hi Rodado22. I'm in Australia & I've had two peritonectomies. First one in 2015 which included hysterectomy as well as removal of another tumour. About 9 hour surgery followed by two weeks in hospital. Second peritonectomy in 2018 which included splenectomy & whipple procedure. This time spent one month in hospital. Third recurrence in 2021 & just finished chemo & about to start on Avestin for maintenance. No operation this time (I hope).I was 63 when first diagnosed & now 70. I have always been fit (yoga & walking mainly) & healthy (vegetarian since 1979) which I believe contributed to my recoveries. I unfortunately inherited a gene mutation (PALB2) which makes me vulnerable to certain cancers.

My main advice would be to make sure you have a medical team you trust & that you feel comfortable asking anything you feel uncertain about (physical & emotional).

Sending love & hope (always hope) and as everyone else has said "Never give up". xx

Rosado22 profile image
Rosado22 in reply to AuntyOrange

What is a whippie procedure?

AuntyOrange profile image
AuntyOrange in reply to Rosado22

Whipple procedure is removing part of pancreas & duodenum.

Rosado22 profile image
Rosado22 in reply to AuntyOrange

I’m pretty fit too, walk every day etc so should help. Got over first op well, just under two weeks ago.

organicinna profile image
organicinna

Hi darling. Well I had radical 8hr debulk last year. They said it be 4hr but it happened to be more to remove.And I woke up with mile long scar up to my years )) I was only glad there was no need for stoma and bowel resection . I was just a night in intensive care then 7 days on the ward. I was in terrible pain. I was crying. But i am a drama queen all my life with very low pain tolerance I believe )) . The after care was super super super. And Other lady's with same op on the ward were better behaviour than me and not in such pain and discomfort, so its definitely individual thing. I had a few ops when I was young and tolerated it very well and always recovered fast. So this time I though it be the same. But no it wasn't for me . They offered to stay as long as i wish in the hospital but I knew I need to go home to get better sleep. At home I could not turned sides for about a month and cry for sleep as well. But then after about 2 weeks after op I was stupid enough to pull my scar medical plaster in the shower after it started to come of , and the wound got open on the top for about inch and a half. I was terrified . And I had to go to GP regular to clean and heal my wound. Again the care was wonderful from all. The wound closed up completely after 4 weeks and they could start my chemo. So please be patient and don't touch anything before they will allow )) All my pains and discomfort gone after 6 weeks completely and I was flying !.....sort of ))

Rosado22 profile image
Rosado22

You did well to fly!

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