I am to have a Peritonectomy

[Jenwren]

I need to say this operation sounds so huge and scary - I don’t know when  I’m having it but I do know I am under a great surgeon which has made me feel a lot more at ease. I am interested in hearing from anyone who has been through this operation and to give me some hints on how to prepare for it. I’m interested in their story......how they learnt they had a problem, their symptoms etc. By the way I live in Brisbane. 

[Katekat]

Hi @Jenwren and welcome to the Community!

I am glad to hear you are under a great surgeon, but it is natural to feel scared in some way about surgery. I hope all goes well

Has anyone here had any experience with a peritonectomy and can assist Jenwren with her questions?

[ToughChick]

Hi there

I had a peritonectomy 30 Nov at St George Hospital. There is no denying - it is a big operation.

I am a 52 year old mum. I have appendix cancer that has spread throughtout my peritoneum. It was diagnosed in October 2017. I am still reeling from the shock.

In Oct I had my appendix and ovaries removed. Then end Nov I had the peritonectomy and Prof Morris removed my uterus, fallopian tubes, gall bladder, some of my large bowel and some of my small bowel. I now have a temporary ileostomy bag which I hate (to be completely honest)

I am now 6 weeks post op and home. I am now pain free, sleep well at night. And during the day have enough energy to get oout of the house for 1 activity for a few hours.

I would be very happy to answer all and any questions you have. No question is off limits. I will answer anything.

It is a big op but you will get to the other side and you will get through it.

I am here if you need me

ToughChick X

[Jenwren]

Hello, I am so pleased you are on the up and up. You have been through the wringer haven’t you? I was diagnosed in November after years of trying to find out hat the bloating etc was in my tummy....I thought maybe a food intolerance, ai do tend to get constipated so often wondered if that was the problem, IBS and the what if’s went on and on. Had a coupe of colonoscopys, untrained sounds, bloods, urine, stool tests etc, but not until the Laparoscopy in November did I learn what was lying in my tummy. Part of me was relieved, I had an answer, and I also learnt it was the cause of a clot on my lung that was diagnosed in Sept 2016 (gone now).

I’m 61, and am very matter of fact about what lies ahead for me......I’ll be having the op at the PA in Brisbane, and have an great surgeon. I have no idea how long this has been with me, the clot was a previous one when diagnosed. I’ve tried to think back to anything that may be when the appendix perforated......all I can think of is back in about 2008 I woke with always pain and vomiting. My husband at the time took me to the hospital where they couldn’t tell me what it was - this was Mt Isa, so say no more

I’m having another Laparoscopy in 1 Feb so after that I hope to have more of an idea what the next step will be. I don’t know what else will need to be removed. 

I’m sure I will have lots of questions a long the way, so thank you for been there for me to answer them. I still work full time too so I have leave etc to arrange when I know more. 

When do expect to loose the ileostomy bag? Did you loose much weight....I recently lost 16-17 after seeing the specialist re the clot on my lung.

Looking forward to hearing back from you.

Jenwren

[ToughChick]

Hi JenWren

Sounds like you've had a very long road in getting to the point where you are finally getting the treatment you require. It can be so exhausting getting the right diagnosis, cant it?

What is your primary cancer in your tummy, if you dont mind me asking? Mine was appendix cancer which spread its merry way around the abdo area. I make a joke to my husband that the operation Peritonectomy is like a shop "Closing Down Sale - everything must go, everything is out the door!!" So anything in my peritonel area with cancer that wasnt critical for "active living" got removed.

You asked about weight loss. Yes I have lost about 8 kg since my op end Nov. I wasnt heavy to start of with, so I am now 50kg and very skinny looking. I hate being this skinny - I feel like a real Bony Maloney!

When I was in hospital, after the op - they had me on TPN - which stands for Total Patient Nutrition. Its basically a bag of liquid, high nutrition food, that went into a central line in my neck. This ensures for the few days after the op when I wasnt eating - I was still getting good nutrition. I suspect you might have this as well.

However once the TPN came out, I had to eat for myself and thats when I lost most of my weight.

You also asked about my ileostomy bag which I'm told is temporary. I start 6 months of chemo on Monday (which I am dreading). Once the chemo is finished they will reverse my ileostomy bag ie remove it and in a small op - reconnect my bowel. So hopefully by the 2nd half of 2018, I will be bag free.

I find living with an ileostomy to be quite challenging. Its not so much changing and emptying the bag. I can get my head around that. Its more managing the output. So my ileostomy is proving to be super efficient. And any food I eat - and I'm eating a lot now - all the nutrients get passed too quickly into the bag. Meaning I'm not putting on weight which is frustrating - cos I'm eating well.

I think I've turned the corner on this though after about 6 weeks of trial and error. I'm working with the Dietician and Stoma Therapist and I think now I'm slowly putting on a bit of weight, which is heading in the right direction.

I'm wishing you lots of luck for your Laprascopy 1st Feb. That procedure will give a much clearer idea of what needs to be removed. Its great that you have faith and confidence in your Surgeon. Thats so important. I was the same. I knew that the surgeon I had, was very very good at what he does. 

Here's hoping after 1 Feb, you get a firm action plan and a date for surgery. That was one of the hardest parts for me. Knowing I needed surgery but waiting for the hospital to confirm a date. It was very stressful!

Anyway, its 1 step at a time for you for now. And Laprascopy is all you need to focus on, right now.

And dont hesitate to keep asking me any questions that crop up

All the best

ToughChick

[Potato]

Hi! I had a peritonectomy back in 2012 when I was 26, at St George NSW (I'm from WA). At the time WA did not fund the surgery, but that has thankfully changed since! The surgery for me took about 8 hours, but it depends how extensive any diease may have spread. I was in ICU and HDU for close to a week, then on ward for a week after, then my acomodation for a week before flying home. 

I lost about 10kgs while I had chemotherapy, but just made sure I was trying to exercise (walking) and eat right, so I was as healthy as possible before I had the surgery. I lost another 10kgs after the surgery, it takes a while for your bowels to kick back in, plus I had some changes in the amount and types of food I could eat. 

Nearly 6 years on, I am back to a healthy weight, I went back to uni, I work full time and I exercise. It was a long journey, it took about 3-4 months to get back into part time and then full time work. It was frustrating but you do get there 🙂

Hope that helps somewhat! 

[Farmgirl2012]

Hi Toughchick, I too have just been diagnosed with an appendix tumour and a Peritonectomy has been recommended at the RPA in Sydney. As I am debating as to whether to have this op or not, I was wondering if you can answer some questions for me.... how are you feeling now, has your life returned to normal i.e. pain free and resuming normal activites and with the chemo treatment did you lose your hair.  Also wondering has your stomach and bowels returned to normal i.e. no bags attached. Last but not least question, how many chemo treatments did you go through after the operation. Many thanks for your time and look forward to your response. Kind regards.

[ToughChick]

Hi FarmGirl

So a peritonectomy is quite an individual operation as it depends on the extent of your cancer. My cancer was extensive so my op was big(10 hours). But this may not necassarily be your experience if you have less cancer. In my 1st op I had my appendix and ovaries removed. Then a month later I had the peritonectomy and had uterus, gall bladder, half of my large bowel, omentum and some of my small bowel removed. For me it wasnt a choice as without surgery I would have died. So no choice for me then!

To answer your questions:

 - I am feeling well now. I am 9 months post op. I go to the gym 3 times a week and walk/run 2 times a week now. (Today I ran a slow 5km, yay!) I started the gym in May so that was 6 mths post op. I have energy and feel good now.

 - My life has returned to normal physically. But my life hasnt returned to normal emotionally. I think for many cancer sufferers this is pretty typical. I struggle emotionally with anxiety/fear that the cancer will come back. And that fear is with me 24/7. That is the hardest part for me. The emotional toll rather than the physical toll. I also have a temporary ileostomy bag and I hate it!  I am hoping the bag will be removed surgically this year and my bowel will be joined back together again. I will be much happier when my ileostomy bag is removed. Living with a bag is a drag!! 

 - if you receive the standard bowel chemo treatment you will receive FOLFOX after your surgery. I had 2 months gap between my perotonectomy and when my chemo started. The FOLFOX chemo thins your hair, but it doesnt make you go bald. My hair thinned but only I noticed it. No one else noticed it. I had 12 cycles of FOLFOX chemo from Jan to July administered very 2 weeks or so. From the chemo, I had fatigue and peripheral neuropathy (nerve pain in the hands and feet). I had no nausea or vomiting, so that was good. The 1st 6 cycles were hard. But then they reduced my chemo dose and the last 6 cycles were a little easier.

 - My bowels havn't returned to normal as I still have my horrible ileostomy bag. I'm really looking forward to being able to do a normal poo!!! Gee the things ya miss 🙂

Do you know if you will get a temporary ileostomy?

Please feel free to ask me any questions. No qu's are off limits. Its a big op but it gives you the absolute best chance of success. Most people are "back to normal" after 3 months from the op. (But chemo may impact that timing, as chemo can knock u round.). Wishing you all the best. 

[ToughChick]

Also FarmGirl - just to add: the hot chemo that they put into your tummy during the peritonectomy doesnt cause your hair to fall out. You will keep your hair thru all this. 🙂

[Louiseturns50]

I am 7 weeks post peritonectomy today. My oncologist reported they have found no evidence of cancer, and at this stage (to be confirmed at an appointment later this week) they are not proposing chemo. The peritonectomy was the result of a ruptured appendix - the pathology revealed a tumour adjacent(?) to my appendix, the original surgeon believed they had removed a sufficient margin around the tumour for it to be ok, but referred me for a 2nd opinion as appendix cancer is so rare. The 2nd opinion came from one of the few surgeons in Aus who performs peritonectomies, and he described the surgery as 'throwing the kitchen sink at it'.

During surgery they removed my ovaries and fallopian tubes, lymph nodes, peritoneum, part of my large bowel and omentum, plus applying the warm chemo bath.  My gall bladder had been removed 15 years previously, and obviously my appendix had also gone.

I was in hospital for 9 days. The surgery and physical recovery has been ok - I was fortunate not to need a stoma - but the management of my treatment was slightly haphazard and this was a source of significant anxiety for me. I was getting mixed messages from lots of different sources - from the surgeon initally saying 'this is completely curable' to his nurse coordinator handing me a booklet that said I would have a 40/50% survival rate at 5 years post peritonectomy; from my surgeon telling me the day after surgery that if he hadn't operated 'you would have been dead in 12 months' to the oncologist saying 'there is no evidence of cancer'.

So - the upshot is that my physical recovery has been okay, but my mental/emotional recovery is a different matter. I am living with a level of fear and anxiety that I have never before experienced; nothing can calm me, and I am barely functioning. For the record, this is quite out of character for me - I have always been resilient and weathered significant life challenges in the past. At this stage I am desperate to find out whether this emotional state is temporary - maybe even just common post surgery blues - or if I will have to learn to live like this. 

For me the care plan is a colonoscopy every year and a CT scan + blood tests every 6 months for 2 years, then shift to CT scan annually until I (hopefully) hit the 5 year mark and am officially 'cured'.