Has anybody had radical surgery and if so can you please tell me what this involved?

[lovemymum]

My mums surgeon has now said a second opinion may offer her radical surgery however he thinks the risk of her being left having to eat and drink through a tube is too high. I have not heard of anyone who this has happened to and wondered if anyone has ever been told this before.

Am very confused as on Monday we were informed she was inoperable yet now I feel we may have more options but am finding it difficult to find anyone in the same situation.

Thank you for any advice you may be able to offer

With love

Vicky

Xx

[Zannah]

I think you should ask the surgeon what he means by it. My understanding is that it can be slightly different according to the patient. For me radical surgery meant over 8 hours in theatre and the removal of womb, ovaries, cervix, lymph nodes, spleen, part of the pancreas and omentum. The removal of the spleen means that I'm on penicillin twice daily for life. Other people may have some of the same things removed, but not all, and maybe part of the bowel. It all depends on where the cancer has spread too. Depending on where you live and what hospital your mum is being treated at, it may be worth seeking the second opinion elsewhere. You may find it useful to ring the Ovacome helpline and talk to one of the staff there.

This is such a difficult time for you and your Mum so it's important that you are able to ask the questions that will help to make things clearer for you.

Sending you a big hug.

Love

Zannah x

[MargaretJ]

Dear Zannah

I think it depends where the tumours are! I had radical debulking and further surgery after first recurrence. I am 73 and have a colostomy, which I manage with irrigation. You need to ask about the position of the tumours, a second opinion will give your mum the chance of informed choice. Your mum has the right to decide on her quality of life with full information!

Good luck,

Margaret.

[Izzystep in reply to MargaretJ]

Hi Margaret. I too have a stoma after debulking and after 11 months am still getting used to it. I have all the irrigation but my stoma nurse is new and not given a demonstration before, so she's not much help. I have watched YOU TUBE so gave an idea. How long did it take you to get used to irrigation?Did you gave any side effects? Do you know if you can irrigate during chemo ( I am starting 2nd line end if this month). Any advice would be great. Thank you soooo much in advance. Izzy

[MargaretJ in reply to Izzystep]

Hi Izzy!

It took me 24 Hours! The Ostomy website has a good video of a NZ chap! PM me if you want any private tips! I have been irrigating for a year now and find I have much more control and fewer accidents! It was 6 months after the surgery before my nurse felt the stoma had settled sufficiently for me to try. I find using a coat hanger hooked over the shower screen gives me the right height for the irrigator and it takes about 5 mins to run in then I give it 45 mins to an hour to work. I have a small set of drawers to keep everything to hand and out of sight of visitors! I use a 1 litre jug that I bought to micx my son's bottles in 48 years ago to mix the water to the right temp! (Blood heat - i.e. neither hot nor cold when you put your hand in) and sterilise everything once a week with Boots bottle steriliser liquid. Have a spare irrigator too to give you peace of mind and be careful when emptying the irridrain down the loo! So much better than having to put bags in the bin!

Good luck!

Margaret!

Ps I am on chemo at present and irrigating though I have had to take movicol today as the chemo is affecting the digestive tract!

[Izzystep in reply to MargaretJ]

Hi Margaret and Fitzy. Strange that both have stoma, both on chemo, yet Margaret is irrigating and Fitzy has been advised not too during chemo. My stoma nurse isn't sure. I think before I start to try irrigation I will wait until my appointment with my onc and seek her advice. I think it will also depend on how I feel with the next lit if chemo. It's a different regime from the first so I don't know the effects as yet. Carbo/paxi knocked me for six. This time it's carbo/gem so not sure. Thank you for your prompt relies. I will PM you and let you know. Izzy xxxxx

[Fitzy in reply to Izzystep]

Hi Izzy. I too have a stoma following further surgery last Dec. I was hoping to irrigate after waiting for things to settle down at approx. 6 months. However I was then told I needed further chemo and was advised to delay irrigation until after chemo as the risk of infection through the stoma was higher due to my compromised resistance. But I will definitely be giving it a go once I have finished (if not before!) Good luck xxxx

[Izzystep in reply to Fitzy]

Hi Margaret and Fitzy. Strange that both have stoma, both on chemo, yet Margaret is irrigating and Fitzy has been advised not too during chemo. My stoma nurse isn't sure. I think before I start to try irrigation I will wait until my appointment with my onc and seek her advice. I think it will also depend on how I feel with the next lit if chemo. It's a different regime from the first so I don't know the effects as yet. Carbo/paxi knocked me for six. This time it's carbo/gem so not sure. Thank you for your prompt relies. I will PM you and let you know. Izzy xxxxx

[sharonforce]

Dear Vicky

I think you need to ask more questions to find out where the tumours are situated and what is the risk.

I have just had surgery (four weeks ago) for my third recurrence of my cancer. Originally I was told that surgery was not an option but after much deliberation and discussion they agreed to go ahead. I was told that as my tumours may be attached to my stomach and bowel the surgery could result in my needing a stoma or complications with feeding etc. I accepted that risk because none of the cancer treatments I have tried this year had worked.

The surgeons did have to remove 10% of my stomach and part of my bowel to successfully remove all of the cancer during the operation and fortunately I am not having any problems and did not have to have a stoma.

Best wishes to you and your mother.

Sharon

[Yogini01uk]

Hi Vicky

I had my radical surgery in May. I had uterus, ovaries, cervix, part of vagina,part rectum, omentum removed. I had to have colostomy but hey I'm here and in remission,feeling well. Get your Mum to ask as many questions as possible or you ask if you are with her. Good luck to Mum. Love Jean. Xxxx

[Izzystep]

Hi Vicky, it's Izzy again. The surgeon might be talking about mums small bowel being removed. If this is the case then that may restrict food intake. Mum hasn't had chemo yet has she? Need to ask lots and lots of questions. Make sure you have all the information available so mum can make an informed choice. It's her body!!! Xxxxx

[Fitzy]

Vicky - I cannot advise as my surgery was totally different (tumours on bowel and spleen) but I agree a second opinion might be helpful. You need as much information and advice as possible. Hope your mum gets the right advice and can move forward confidently, and indeed successfully! Very best wishes for your mum xxxxxx

[vintage62]

Vicky, I had radically de bulking surgery & was told before I might have to have a colostomy, in the end I didn't have one. I already knew though that it is not that bad, my grandma had one for bowel cancer when I was only four so I had experience of what it was like. My gran lived a normal life & no one even knew she had it & I must say at the time I though it was great to have a gran who didn't poo out of her bottom( I was only four). As I got older I was just proud of her as she was a wonderful gran, she sadly passed away due to a heart attack but she had many happy years after having a colostomy & the surgery has improved drastically since my gran had hers done. Sue.

[vintage62]

Hi, Sorry forgot to add best wishes to you & your mum, I hope your mum gets the best treatment for her. It is a case of asking questions as everyone is different & radical de bulking surgery is different for everyone depending on where tumours are, when I had mine things didn't look good but after having it done it turned out I didn't even have to have chemo. My tumour was a huge one which weighed about 2 stone & I looked like I was having twins I honestly thought there wasn't much hope, so it shows it not always as you think it's going to be. I've gone over a year now & so far so good. I had my surgery in St James in Leeds which is a very good hospital for treating ovarian cancer, I don't know where you are but it does seem to make a difference where you have treatment. Hope you get some answers & the right treatment. Sue xxx