Extensive ultra radical surgery

[Millie-c]

Well after my very emotional day at the hospital yesterday I didn't sleep much last night. 

I'm having what's called extensive ultra radical surgery, which involves removal of any signs of cancer from my organs. 

I say emotional as I had a meeting with a stoma nurse just in case they find anything on my bowel and they have to remove it. I can't quite believe it. Just something else to add to my worry. 

The surgeon talked about operating on my liver if necessary, removal of spleen if any evidence found there, etc.....

My ct scan shows no sign of disease on my spleen, liver or bowel, but they say until I'm opened up they cannot guarantee this. 

I know all this is worst case scenario but it doesn't stop me worrying as I won't know until I come awake after the op. 

I'm already scared for the op and now I am having it done with so many unknowns??

Has anyone else been through this kind of surgery?? Any advice??

[Hidden]

Hi Millie-c.  Of course that was a lot of information to take in yesterday.  From my experience they do give you the worst case scenario.  I was also threatened with a stoma but it didnt happen.    There is a lot of unknowns, I had never been in hospital prior to my surgery so it was a new experience.   My friend told me it was better to go with the flow so I did that and it helped.  I suggest you ring Ruth the Ovacome Nurse for a chat and hopefully she will be able to answer any questions you have regarding surgery.  I returned to the ward the morning after surgery as surgery wasnt as complicated as expected.   The physio had me up and about the ward that evening.  It is daunting but remember every day post surgery you will feel a little better.  Buy some nighties for the first few days and also a nice hand cream and vaseline for your lips as they may be dry.  Bring in some music on ipod or whatever you use as that will help you relax.   

[Millie-c in reply to Hidden]

Thanks Suzuki, I'm gonna get my case ready sooner rather than later. A few more nighties I think too. 

Good news about not having a stoma. I know if it saves my life I will deal with it but I just can't bare to think about it at the moment. 

I'm trying to go with the flow but I'm so anxious as you know. 

Two weeks and I will be the other side of the operation. 

I can't wait, 

Thanks again for your reply, 

[Hidden in reply to Millie-c]

I had a nightie that said in the front I would give up Chocolate and at the back it said but I am not a quitter and that is the way I have dealt with this illness so far.  I felt the same about the stoma, if I needed it I needed it and had no say in the matter.   We have to leave those decisions to the consultants who act in our best interests.   From what I can gather, stomas can be managed after surgery when you are well enough to cope with learning how to sort it.  I hope some ladies who have had this op will come on site and give you encouragement.  It is a hard journey.

[Millie-c in reply to Hidden]

Thanks again Suzuki, 

The nightie sounded fab. Hope I can get something similar.lol. 

Its amazing when I'm four months in and you are years in that you take the time to respond to my post. 

I'm truly grateful., xxxx

[January-2016-UK]

I had a somewhat similar conversation as you and I just signed to say they could do it, if they found any of it necessary and all risks had been explained to me. Obviously I hoped I wouldn't have a stoma and I was pleased when I came round to discover it hadn't been necessary.  I think it has to be gone through with you beforehand, otherwise they'd probably have to stitch you back up and get your consent subsequently and then re-operate.

It is worrying though, so good luck!

[Millie-c in reply to January-2016-UK]

Thanks for replying, 

I signed the consent form as there really is no choice so I know what u mean about that. 

I'm trying not to focus on what is actually gonna happen now. See what the outcome is after. 

It is life saving surgery so need to have done whatever the specialists think, but it is best not to think about it. 

My sister said if you had a filling in your tooth explained in great detail you would probably never have one, not the same size op I know but I get what she means. 

Have a lovely day, 

Mandy, xx

[Flamingobeef18]

I too decided to go with the flow and trust my doctors and their expertise. My Gynae Surgeon told me that I would have a pretty crap 12months of treatment and he was right but it had to be done. All this took the pressure off me and I could concentrate my energies on getting through it. 

Unfortunately a Radical Hysterectomy which involves the removal of all reproductive organs and other non essential structures is often required treatment for many of us with OV. For me it was not certain at diagnosis whether my cancer would be operable. I had chemo and responded well enough to allow for surgery. It sounds strange but I was thrilled to be told I could have surgery.  Due to cancer lesions on my colon  I too was advised about possibly needing a stoma.

I had my surgery in January 2015, about 10months after diagnosis. It was successful and I did not need a stoma.

It is completely normal to feel overwhelmed by everything that is going on but you will get through this.

all the very best.

Love Juliax

[Millie-c in reply to Flamingobeef18]

Thanks Julia,  

10 days to go and the op will be upon me, I can't wait in one sense to have it  all over and done with, but then in another sense I'm so anxious it's all I can think about. 

So many women on here have gone through surgery, so I know it is possible. 

Good news about not having a stoma, I really am keeping my fingers crossed. 

Thanks

Mandy,xx

[Hidden]

Millie I am so sorry to hear your news. I too had consultation on Wed and was told exactly the same. My operation is in 3 weeks. Terrifying to hear news re stoma. And not knowing until we wake up exactly what will have been done. The consultant also mention removing the appendix  I forgot to ask why ! 

I too went through the stress of GP saying its IBS/menopause/grumbling appendix. 

She put me on HRT a year ago now I'm concerned its the HRT that has caused the ovarian cancer. 

We will get through this Millie. Coming through it all much stronger people. 

I am so inspired by all the ladies on this site. When I feel low I read through all the comments and it helps massively. 

Xxx

[Millie-c in reply to Hidden]

I read posts on here and think most of the women on here have been through what we are going to go through so it does offer positive reassurance to say the least. 

Have you had any chemo yet or have they decided to operate first? 

Hugs to you

Mandy, xx

[Hidden in reply to Millie-c]

Apparently laparoscopy first to see how big the mass in abdominal is. If too big then he said they will just take biopsy/fluid and will need chemo to shrink. If ok to operate they will go ahead there and then to do full hysterectomy and debulking. Followed by chemo. Like you I just really want the surgery first. Just want to get on and get it all out. I love reading all the positives. When I first heard I had OC 4 weeks ago I was terrified. Now am feeling very positive that surgery and chemo will work. I try not to read any of the statistics relating to OC. 

It's just all the waiting. I have only had one day off work so far. Trying to carry on as normal. Not easy. Hugs to you too  and to all that are suffering  

Sarah. 

[Millie-c in reply to Hidden]

Hi Sarah, it's the not knowing part isn't it. I ended up with biopsy and draining first then was supposed to be 3 chemo, surgery,  then 3 more chemo but I have now had 4. 

You are doing the right thing to keep working as long as you can to keep your mind off things. 

Iv not worked now for two months and am getting fed up. I was diagnosed end of January. I kept working as long as I could but once the chemo started it was more on and off I didnt have the energy anymore. 

Hope you get the disease cut out of you and don't have to wait. 

If you have any questions don't hesitate to message me. 

Mandy,xx

[Cre27]

Just to reiterate what all the other ladies have said it is such a roller coaster. As my explorative op showed the tumour was squashing the bowel I did have to have a stoma. I didn't like the idea of it but the stoma nurses were brilliant including the home visits I had afterwards. I did get used to it and now after chemo, debulking surgery then more chemo it has now being reversed. The surgeon did tell me at the end of it all that without it my survival might have been in doubt  because the pressure on the bowel on top of chemo could have caused major problems. I don't want to add to your worries but to reassure you that your medical team know best and will do what is in your best interests. Trust them. Sending you lots of virtual hugs xx

[Hidden in reply to Cre27]

I think it all just comes as a shock. And all so sudden with OC. There is not much time to absorb what is happening. The symptoms are so vague compared to a lot of cancers. It's the last thing you think you have. 

It's reassuring to hear about your experience. I had no idea about a stoma until the surgeon mentioned it this week. 

It does appear that until they actually operate even they are not quite sure what they will find. 

Sarah x

[Millie-c in reply to Cre27]

Thanks for your positive reassurance, 

I know if I have to have a stoma many people cope with them all their life and I have to come to terms with the fact that this may happen,

I think this is why they tell you before the operation to come to terms with it instead of being so shocked and distraught afterwards. 

Good news about your reversal though, you must be pleased. 

Mandy. Xx

[valo]

Hi. Just wanted to wish you well, I had no option with the stoma as my bowel perforated as 1st sign of oc   It saved my life and being able to cope has been no bother  I have completed course of chemo  now having 12 avastin treatment. On last scan there was no visible cancer so have had no further surgery, hoping to have reversal of stoma  later in year  Just concentrate  on what is happening next. And you will cope lol x

[Millie-c in reply to valo]

Thanks for your reply, most people who have commented with a stoma have sent such messages of reassurance that I know if I have to have one that it is all copable, I do feel a bit more like the choice isn't mine anyway so I can't really worry about it. 

Thanks for your reply. Xx

[ValB2]

I also had the....these are the possible outcomes...conversation from the surgeon... My total hysterectomy went well and none of the 'worst case scenario' happened.

Good luck - take your time, don't rush things.

Val

[Millie-c in reply to ValB2]

Hi val, 

I think I am just over worrying things, I know they have to tell you worst case scenario but my emotions keep getting the better of me for some reason, 

It's like all this I'm already going through and now I may have a stoma, what the hell!! 

Anyway, fingers crossed. 

How's the chemo going?? 

[thesilent1]

Hi, try not to worry too much.  The day I was admitted the surgeon told me the same thing and the stoma nurse marked me up for the stoma, just in case.  The disease had spread to my bowel but this was all small so the surgeon scraped it off and I didn't need a stoma. Thankfully my liver and kidneys were OK.  Good luck.  Ann xo

[Millie-c in reply to thesilent1]

Thanks Ann, I'm keeping everything crossed. 

Enjoy the sunshine, xx

[LesleyGreengran]

Hello. I got a few dire warnings before I went for surgery. They have to tell you the worst that can possibly happen. That was 5 years ago. I didn't end up with a stoma, which I was pleased about, but people do learn to cope with them. That's what I told myself, anyway! Try not to worry too much. Hard I know but the main thing is to stay as fit as you can for the op and chemo.

[Millie-c in reply to LesleyGreengran]

Thanks for your reply, 5 years ago, that's amazing, it really gives me confidence to hear from many women that are years of survival. 

Enjoy the sunshine. Xx

[PhillipandBettykid]

I had the dreaded stoma on my first operation. The tumours were so widespread they had blocked the bowel. It was a bit of a shock and I hoped it was reversible. The second debaulking op showed extensive damage to the bowel so they took half of it and some of the rectum so I am now stuck with the bag. (Just call me Mrs Sidebottom!) 

It is not so bad, even with the colitis that the bowel damage has left me with. I just have to carry a nappy bag around with me. Sometimes it explodes but Tena lady pants can be helpful. 😀 You'll cope and just think of the advantages. When my GP asks how my bowel is I can say "Look here is one I made earlier".

Whether you have a stoma or not you will cope. As everyone has said they have to give you the worst case scenario. The best case scenario is you. You will find inner strength you didn't know you had. Friends, and family will surround you with care and love. There will be blessings that surprise you.

[Millie-c in reply to PhillipandBettykid]

Sounds like you are used to the stoma, which gives me strength to know if I do have to have one I will hopefully get used to it in no time,

Thanks for your reply and enjoy the sunshine this weekend. Xx

[TrishLey]

Dear Millie,

I had this kind of surgery. I was also told evertything you have just been told. It frightened me too but everything turned out fine in the end. I believe for the most part they have to tell you these things just in case, but it is rare that it happens. So please try to relax and not worry to much. We are here for you xxxx Trish 

[Millie-c in reply to TrishLey]

Thanks trish, reading all the replies on here is making me much calmer, lots of people have gone through this kind of surgery and come out the other side and sent so many posts of encouragement. 

I actually believe and hope I will be fine.xx

[Susan3]

Hi Millie 

I really feel for you . I had this untra radical surgery for my second surgery last September . My first surgery was hysterectomy , omenrum removal and ovaries . This and Chemo gave me a year  remission so I felt lucky to be offered the second surgery a year later . Every case is different and they knew before surgery that I would need spleen , gallbladder out and have a a Stoma . My recovery was slow but more due to my back problem than anything else . I finished second line chemo  in March and back in remission . Recoverying well and Stoma reversal surgery next week..yah! You can and will get through this . A bit of advice I was given is don't borrow worry from tomorrow. I totally understand your apprehension but you have enough on your plate  without worrying about things that may not happen . Stoma worked very well for me ..inconvenient and not very nice to have but didn't restrict me anyway ..I could even swim no problems and didn't get any  constipation on chemo because of it . Hope your surgery goes well and in mean time try to do a few nice things to distract yourself .take care xx

[Millie-c in reply to Susan3]

Thanks for your reply, 

It's unreal what you have been through and yet the yay for the reversal. 

You sound so positive, Thanks for your words of encouragement.

Mandy, xx

[tutti]

I had what was called pelvic exenteraration in2007 which involved removing my bowel and bladder so I am a two bag lady!Following that half my diaphragm and a bit of liver in 2011.No recurrence since then but just beginning to have problems with blocking of colostomy and urine infections but up to now have coped well .After each surgery I made a gquick recovery and soon adapted.Hope you cope with whatever is ahead in a positive way.Stoma support groups are very good for helpful advice.

[Millie-c]

Thanks for your reply, 

It is good to hear that people cope no matter what in these circumstances and you sound very positive about the experience of the operations. 

I know if I have to have a stoma that I will just have to cope, but it's the not knowing. I suppose I am preparing myself for one so that is the reason they tell u that u might have one.  

Everyone has said the stoma support is very good, so that is reassuring. 

Sorry to hear you are having difficulties at the moment, hope you get it all sorted. 

Mandy, xx

[Beckyjh]

Hi there. Not much to add really from what everyone else has said, but I had this "super radical" surgery last year. Pretty much everything in my abdomen scraped or taken out! There was some cancer on my liver but luckily could be scraped off, same with my pancreas and diaphragm. I did have my spleen removed as well but luckily didn't need a stoma. It's almost a year to the day since my surgery which was followed by 18 weeks of chemo. The surgery is scary but a year later I am completely back to normal (?!) Good luck xxx

[Millie-c]

Thanks for your reply, 

I can't wait to get back to normal and from quite a few responses on here time sure is a great healer, 

I'm sure in a few months time I will be thinking what all the worry about the surgery was about. 

Thanks for taking the time to respond to my post and pleased to hear you are doing well and back to normal

Mandy, X

[Jo-Bo]

Hi Millie Yes I have been where you are. I was so freaked out that I couldn't stop crying the morning of the operation and as a result they couldn't get the epidural line in. I think it is normal and natural to be frightened when there are so many unknowns. I hope it all goes well and you have a speedy recovery. Jo x

[judyved-US]

I'm sending prayers and hugs out for you, Millie. Judy

[Millie-c in reply to judyved-US]

Thanks judy, I had a blood transfusion yesterday in preparation for the op. Others have said this should make me feel much better by Sunday. I'm hoping it does, fingers crossed.

Mandy. Xx

[Alifit]

I'm due to have ultra radical surgery tomorrow, and was recommended this site by someone on Macmillan forum. It is so reassuring to hear positive stories from everyone - I too have fears about the extent of the surgery and of course, about having a stoma. I am have a couple of friends who have had stomas (for other medical conditions, not cancer) and they have offered support for me which is lovely. I am trying to look on the possibility of having a stoma as a minor irritation compared to the alternative, however, I know it will be the first thing I'll check for after the op!

Ladies, your stories are inspirational and have helped me no end to prepare for tomorrow. Thank you all - I'll post how I get on when I can.

Ali x

[Millie-c in reply to Alifit]

Good luck with everything Ali, wishing you well. I ended up with a stoma but to be honest it's a small price to pay for life saving operation. It will feel difficult for a while but it will get better. Thinking of you.

Mandy, xx

[Alifit]

Thank you Mandy for your good wishes. I agree with your brave approach to the stoma - a small price to pay indeed.

Ali xx

[Burton89]

I'm having the exact same surgery on the 5th feb and I'm terrified I'm 28 years old. It's only been 2 weeks since diagnosis and I just can't get my head round it. This year was going to be a new start I found the love of my life after 10 years and we've barely been together a year we had big plans. Iv been struggling to find someone who had this surgery so any advice please share. Also how are you now what happened after surgery ie recovery further treatment sorry for all the questions I'm just desperate for answers Charlotte x

[Sunfleury-UK in reply to Burton89]

Hi Charlotte, I'm so so sorry that you've had cause to find the site- you are though warmly welcomed & you will find a huge amount of support, experience & friendship here.

Diagnosis is terrifying and i remember feeling like I had been swept up into a whirlwind.... have you got a copy of The Younger Women's Guide to Ovarian Cancer? It was produced by the main charities together, with a lot of input from women who had been in very similar circumstances. You can download it or order a paper copy from Target Ovarian Cancer, The Eve Appeal, Ovacome or Ovarian Cancer Action. Theres also a really useful guide, 'What Next?' For all women newly diagnosed by TOC. The first three charities above also have nurse-led helplines & will offer both support & expertise.

It can feel very isolating and I think it takes a lot of strength to reach out as you have done... Do keep on posting.... Sx

(I was diagnosed at 39 nearly 5 1/2 years ago. I had the 'big op' and chemo. Ive been very fortunate to have NED (no evidence of disease) since the op)

[Burton89 in reply to Sunfleury-UK]

Hi thanks for your reply. I'm scared of everything drains needles pain. Had the most perfect year with my new partner. We're both gym addicts he competes in strongman he's turkish and super handsome I would say a Little vain. We had so much planned this year. He'd just gave me the confidence to love my body now I'm being faced with a huge scar. Possible stoma and possible losing my hair. I know all these thing will save my life but I'm young and I know it's going to make me very insecure my partner says he'll stick by me but I'm worried I'm going to ruin his life. Just a week before diagnosis we were talking about having a baby. Life just seems so unfair and I feel so selfish for having these feelings. Surgery is next week and I just can't come to terms with any of it. I honestly feel like id rather not wake up from the operation. I'm sick of hearing people say what done is done or whatever it takes. I just can't see a life past this totally heartbroken. Talking just doesn't help either. I'm so full of anger. Sorry to be a downer just everything has happened so fast xx

[Sunfleury-UK in reply to Burton89]

Please dont apologise, I (& Im sure so many people here) understand your feelings & fears. Its really really sh***y! I would encourage you to just try to take one step at a time and be kind to yourself. Also do see if your CNS can refer you to a specialist counseller.... I asked for this & saw an oncology psychologist after my op, throughout chemo and for a while afterwards.... Asking for the referral just sets the ball rollling, it will still be up to you if/when its right. He really helped me to get through and make sense of some really difficult stuff.

I couldnt have imagined how I would have got through it all but I did, as did all the women here... in their own unique way & there's no reason to think you wont too(however impossible that feels now). The saying 'you never know how strong you are until being strong is your only choice' resonated with me & I held onto it.... Do keep posting here (you may get more response if you write a new post) I wish you hope & strength Sx

[Burton89 in reply to Sunfleury-UK]

I'll have a look at the links Thank You x

[Millie-c]

Hi charlotte,

Sorry for the delay in responding to you. Iv been super busy. It actually feels good to say that as life has pretty much resumed to normal. I have pm u my number if ever u want to chat.

I remember feeling exactly like you a couple of years ago on my diagnosis. It's difficult not too with the unknown in front of you. I struggled for the first time in my life with anxiety which I couldn't control and thought would never go, but it did. It is one rollercoaster ride but somehow you will get through it.

I had 4 chemotherapy sessions before my surgery to shrink the tumours which left me needing a few blood transfusions beforehand. I was quite weak before and after surgery and it feels like your never gonna get any strength back to do the most normal of things, but day by day, little by little the pain gets better, the wounds heal, it all just takes time. Just rest and let nature do its job. Find something you like doing to keep your mind from wandering. I started knitting which was something I never thought I would have the patience for, but I did little squares for the premature baby unit at the local hospital which was a lovely feeling to do, watch some box sets, read, anything that takes your fancy.

I had another 6 chemotherapy sessions after my surgery, a few more blood transfusions, 18 sessions of avastin and on the 8th Feb I'm having my first op to enable me to have a double mastectomy as I carry the brca gene.

My partner was an amazing support throughout my treatment and I love him so so much, I feel awful he has watched me go through so much, but it's a lovely feeling to know when the chips are down we are together in this through thick and thin. All the plans you have for the future are just delayed a little not lost.

This site has and still is an amazing place to come for support, ask questions, whatever really....... Any worries, anything, just ask away. Cxxxxxxx