Newly diagnosed, advice needed: I’m at the... - My Ovacome

My Ovacome
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Newly diagnosed, advice needed

Emmacrispins
Emmacrispins

I’m at the beginning of my journey...scared, overwhelmed, still in disbelief.

My ct shows an ovarian mass and peritoneal disease. My surgery is booked for next Friday. The surgeon spoke of peritoneal stripping, and removal of omentum. Has anybody experience of this? I’m looking advice, words of wisdom, anything really, I just feel lost in all of this right now xx

41 Replies
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Hello Emma

Big hug for you... must have been a shock!

What your surgeon is describing is standard for OC ... they take the ovaries and uterus plus the omentum, sometimes the appendix too. The idea is to get rid of all visible disease so that chemo can mop up any microscopic disease.

Make sure they explain it all to you, they may talk about ‘worst case’ and ‘best case’.

The good news is that surgeons are pretty good at this surgery and that most patients respond pretty well to first line treatment.

You will need help after surgery.. it took me many weeks to be fully healed but it was doable and I had few side effects. You are in the right place on this forum, lots of advice and support... ask anything you like, someone will have an answer. Very best of luck with it xx

Emmacrispins
Emmacrispins
in reply to Lyndy

Thank you Lyndy, it’s so good to hear from someone who’s been there. It just feels so unreal still. I stupidly googled peritoneal cancer and scared myself stiff! Thank you for taking the time to reply to me xx

Hi, I'm the same ovaries and pertioneal. I have had 4 chemo's of taxol/carbo so far and am due to have surgery in a couple of weeks, then four weeks break and my last 2 chemo's. I am seeing the consultant next week about the extent of the surgery. I am doing well with my treatment so far and still have some hair, albeit sparse in places and have had few side effects from the chemo, which are easily managed with medication. I understand the roller coaster that you are going through right now. but it will get better. X.

Thank you so much for your reply, it’s really reassuring to hear from somebody who’s been through this xx

Hi Emma,

Welcome to the forum! Not that you wanted to be here, I know.

Yes, as Lyndy said, most of us have had what is known as ‘debulking’ Surgery.

This is either done after 3 doses of chemotherapy (& followed by 3 more afterwards) or like you, done not long after diagnosis.

Most people have had some sort of spread from the ‘Gynae’ organs, particularly to the omentum, peritoneum and various other organs eg. Liver, pancreas, bowel, diaphragm. It sounds scary (& it is!) but the Surgeons are amazing. Most Surgeons achieve either total ‘stripping’ or near total.

You will be in good hands. It is a big operation but it’s amazing how the body copes.

Do you know what your follow up will be?

Wishing you every success & let us know how you get on.

Linda 🌷🌹

Thank you so much 💓

The consultant told me that she thinks the mass is ovarian or fallopian in origin, and that there’s ‘seeding’ in the peritoneum and possible omentum - upper abdomen and lymph glands appear clear, is that a good thing?

She said I’d have 6 months of chemo.

Thank you for replying to me and helping to calm my anxiety xx

Hi Emma,

Yes that sounds good....anywhere that’s clear is fantastic.

Linda 🌷🌹

Yes, probably most if not all of us, my surgeon went in and removed everything not needed. When stuff is removed there's better odds it won't return. The surgery wasn't bad, I had a 13 in incision, but found if you turn on your side then push up its not as painfully gett6 out of bed afterwards. I've been cancer free 6 years, some people more than me. Best wishes, Liz

Thank you so much for replying. Do you mind me asking what they took during your op? Xx

I know you didn't ask me what they took out, but I will answer you anyway. In my case, I'd found a lymph node in my groin that was very swollen. During surgery, they took that out, plus the ovaries, fallopian tubes, womb and cervix, the greater omentum (normal to remove that, they leave behind the lesser omentum which cannot be entirely removed), a 5cm tumour attached to the pelvic wall and 15cm of the lower bowel. Luckily the surgeon resected the bowel together and I didn't wake up with a bag, but in some cases, they do fit a bag and this can sometimes be reversed later. They would have removed anything else that looked suspect (appendix, spleen) - they take out anything they can that you can survive without IF it appears to have any cancer at all, because they can see tiny spots of cancer with the eye that do not show up on scans.

You will be asked to sign a consent form before surgery- that will have a list of anything they think they might need to remove, although they cannot be sure precisely what they will take out until they're inside, so it might not be everything on the list. Ask all the questions you want, when you've had a chance to think about what to ask -its usual to wake up with a morphine pump afterwards for pain relief. I felt like you did (I think we all do) and actually had a second appointment at my request with my surgeon prior to surgery so I could ask extra questions. Marshalling your thoughts and getting to grips with what they might do is pretty difficult, so you don;t always think what you want to know at the first consultation, usually, we're just in shock. I didn't even know what the omentum was, never heard of it, I had to look it up on Google... Also use the Macmillan (CNS) nurse - they're full of information and advice and act as an interface between you and your surgical/oncological team.

It's a big surgery, but its doable, obviously - almost everyone has this sort of surgery for OC. One tip though, take a dress to wear home again after the surgery. I couldn't stand to wear anything round my waist 9 days after surgery when I was discharged, so I came home in a wool dress (it was January), no knickers and a pair of long leg warmers... but I had bought (big) knickers a size up from those I usually wear and wore those for a while at home. If you go in in close fitting jeans or something, its quite difficult to get them done up again after surgery. And take in a small jar of vaseline - morphine might kill the pain, but it dries out your mouth and lips. I hadn't take any in with me, and whenever a nurse or someone asked me a question, I'd find my lips had stuck to my teeth... a slick of vaseline over your teeth helps with that. Wish someone had told me beforehand!

Deep breaths my dear, and take heart...

Miriam

I too have been where you are at right now and it is totally overwhelming and you feel so alone but believe me you are not and you will find an inner strength and get through this. Googling is the worst thing you can do but we all do it. I had my operation in Sept last year, full hysterectomy and omentum removal. I was terrified about the op but on the day I was surprisingly very calm. The op went well and I only spent 3 nights in hospital. It was not as bad as I had anticipated or had read on Google, it was uncomfortable but very do-able. I am now about to have my last chemo next Monday with hardly any side effects and have managed to continue working albeit at home. You will get through this even though it doesn't feel like that right now xx

I remember this feeling well - shock and disbelief. I had a wonderful surgeon who did an excellent but extensive debulking operation and removed all the cancer. Good luck on Friday. Please ket us know how it goes, Wendy

Hi Emma, Huge hug I know exactly how you feel I had my de-bulking op in December and will be having my 3rd chemo tomorrow. All the advice and information you have been given by the lovely ladies is totally correct, the op won't be as bad as you think and you'll be looked after well. It is so shocking but you are not alone. Good luck and God Bless xx Sue

Like the others say, this seems to be standard OC treatment.

I was in a similar position & had 'debulking' surgery in November 2019 Full hysterectomy (uterus, tubes, ovaries), removal of omentum and 'scrape' of the peritoneum. My surgeon also removed many cancer 'nodes/cake' from appendix & pouch of douglas (which I'd never heard of!). My surgeon told me that analysis of the omentum & peritoneum tissue also helps with the classification of the cancer which guides future treatment. As others have said, be sure to have help at home after surgery - I'm 54 & was fit before surgery but couldn't lift a big pan onto the hob for 4 weeks!

Yesterday I had 5 of 6 taxol/carbo chemos + avastin since no. 3.

It's all very overwhelming & confusing, especially at the beginning when you're dealing with the shock at the same time you are being told about parts of the body you've never even heard of. I always take a pen & notebook with me & write down what I've heard. I use the same book to note any questions I think of at home so I don't forget to get answers. This helps me feel a bit more in control.

Good luck for Friday xx

Thank you so much, glad you’re coming to the end of chemo. Lots of love 💓

Hi Emma

My mum (57) was diagnosed with stage 3 High grade primary peritoneal cancer in January this year. Me and my mum are best friends and when we got the news our worlds came crashing down around us. The worst part for us so far was the waiting of the results to find out if treatment could be done, taking the biopsy etc. That time felt like it was going so slowly and we really struggled to get daily jobs done because all we could think about was what was going to happen and naturally thinking the worst. My mums lucky enough to be treated at The Christie in Manchester and they’ve been fantastic so far. My mums plan is 3 rounds of chemo (Carbo/taxol), a debulking surgery, and then 3 more rounds of the chemo. The plan after that is to keep her on a maintenance drug called Avastin for two years which is meant to keep the cancer away for as long as possible. He did say there are other lines of therapy to look at should these not work. This is made us cope so much more knowing there’s newer options out there, and all the positive success stories on here keep me going. The ladies in this forum are wonderful and share so many stories similar to ours. My mums just done round one of chemo 6 days ago. She started to feel unwell on day 4, so hopefully she will pick up again in a few days. One word of advice, when chemo starts do your very best to keep drinking 2-3 litres of water a day, my mum has got dehydrated so quickly and ended up on a IV to rehydrate. You’re also going to need a thermometer to check your temp during treatment, I made the mistake of buying a £20 one off amazon. Long story but it wasn’t accurate, we panicked thinking she had a 38.9 temp and the hospital said the forehead strips for children available in supermarkets are more accurate than thermometers.

Good luck on your journey you’re surrounded by an army of fighters here all in the same boat. Here if you need us xx

Thank you all so much ladies ♥️♥️♥️

Hi there Emma,

I had pretty much the same diagnosis as yourself last June ( though I had started getting really poorly in the late April. I was diagnosed with OC of the Fallopian tube which had spread to lots of little sites but particularly my peritoneum where a large growth had attached.

Like yourself, I felt utter disbelief and horror. I just thought, that’s it, my time is up; I couldn’t even cry.

However, I was given a regime of three chemos, surgery to remove pretty much everything in my abdomen ( omentum, appendix, cervix, some bowel, etc.) followed by three more chemos.

To be fair, the chemos weren’t half as bad as I expected and even the surgery, though I was literally terrified, was absolutely fine. I think this was due to the fact that all the staff were so incredibly kind and comforting.

I’m now doing really well showing no evidence of disease. I do half a couple of slightly raised lymph nodes but my Oncologist said he doesn’t think they’re anything sinister. Unfortunately, I did also end up needing a stoma ( which I’m slowly adapting to, but I can have this reversed later on, which I plan )

I’m currently on the maintenance drug Olaparib as my tumour contained a BRCA mutation. ( I’m also awaiting results for BRCA gene testing. ).

The journey is tough but you will be looked after by wonderful, kind people along the way and you’ll beat this disease Emma! I wish you lots of luck and love along the way.

The support you’ll receive in this forum will really make a difference too, it’s very comforting. The ladies on here are amazing!

Denise xxx

Ps I also have a friend with a similar diagnosis ( Tumour attached to her peritoneum ) who has never had recurrence and has been clear ten years!

Xxx

Thank you! This is just the sort of positive story I was hoping for. You are so kind, thank you for sharing your experience, big hugs to you xx

I was diagnosed with oc stage 4 in October. Went on trial ICON B8. This meant on Carboplatin. Taxol and avastin after 3 rounds had op to remove full hysterectomy plus omentum and part of the peritoneum. Had this done 4 weeks ago and now back on chemo for 3 more. Like yourself I was scared of the unknown but asked my surgeon and onc lots of questions. You are looked after really well and although a bit of an ordeal I am out the other side. Everyone is different and my main thing was extreme wind pain after op which eventually got bowel pesseries to fix it. My main thing I would say to you is ask the questions. Good luck with it all.sending loads of positivity you way along with tender hugs.

My heart goes out to you. Bless you.

It is a massive shock when first diagnosed. I couldn’t sleep or eat for a few days so I phoned my Cancer Nurse SpecialistIt who helped. It took me about 18 months (after my diagnosis) to accept it & try to live my life while I felt well enough.

I had my debulking surgery in Feb 2018 followed by 5 cycles of chemo ( I was due 6 but my body decided 5 was enough).

Weirdly, I quite liked chemo day - nurses were very lovely & jolly. I also didn’t feel poorly on chemo day.

Someone has already mentioned a notebook for writing down info from your consultations, phone numbers, hospital numbers, questions you think of & anything else. It’s invaluable.

Mine is with me at every appt.

My advice is try not to google. If I want to try & find out anything I go on the Macmillan or Cancer Research websites. If you have a Cancer drop-in centre near you, they’re very supportive too.

Be kind to yourself. Let yourself feel however you feel. It’s normal to feel scared.

All the best for the surgery & treatment.

Take good care xx

Hi Emma I remember well when, just over 12 years ago in Oct 2007 I basically was told the same thing. So scared, scared of the op of the future, if indeed I had one. Well the first thing I can say is that me, being the biggest wimp going, got through the op (radical hysterectomy ) and home in 4 days. Wasn't anywhere near as bad as I imagined, amazed at how every day I felt that bit stronger. I went on to have chemo, two recurrences, 3 trial drugs (of which I am still on one) but still here, no evidence of disease. Don't google, you will simply scare yourself more. Your journey is yours and you are not a statistic. You are you and you can do this. Seek counselling if you need it, it helps. Take practical help when offered. Be kind to yourself, when you feel like noting more than a duvet day take one. We will all be here for your questions and a reassuring virtual hug. Kathy xx

Thank you Kathy, yours is a good story to hear, I’m so glad I took the leap and joined this forum, thank you for your love and support xxx

Oh my! I’m overwhelmed by your love and kindness, thankyou all so much, I feel reassured knowing that you lovely ladies have been through this too, thank you for caring and helping me to cope. You are all amazing ♥️♥️♥️

HI Emma--so sorry you have to deal with this but of all the people who understand, these ladies understand the most, and help the most! You have been given such good advice I would just add to keep notes, and list questions as you go so when the time comes to meet with a specific doctor, you have those questions at the ready for that person. Try to keep your strength up with walks or other exercise till surgery so you are as strong as you can be which will help recover from the operation. And see if possible if you can take it one day at a time. Thinking of all you are embarking on can be overwhelming! Good luck and we are here so please keep us posted. oxoxox Judy

Hi Emmacrispins, It is really sad that you've to go through so much pain. I hope you're getting enough support and love from your family and friends. Be calm and patient your surgery will go well, I'll pray for your good health.

Be positive and keep fighting, best wishes!

Hi Emmacrispins. You poor thing. We all know how you feel. Like a building just crumbled on you. I went to dr thinking I had bad constipation and when I was told what was going on, I immediately went into a dream like stage.

The drs in this specialty are gifted angels. They will take good care of you. They and the nurses will embrace you and guide you through every step. Your job is to just keep believing that everything is going to be ok. Take care of your body along the way. Eat as healthy as you can and drink plenty of water.

I made the same mistake as I think we all have was to go on the internet. Most of the information and statistics is outdated. The ugly clinical explanations don’t necessarily apply to you. There have been many women that went through this who are doing well. I was grateful to find this group. Tons of great information and the ladies are such a great source of comfort and support.

We are all here for you. Please let us know how you are doing after the surgery. I will keep you in my prayers. You can do this.

Xox

Marisa

Hello Emma, what you are describing is exactly what I had. It’s standard surgery for OC, I had then 6 rounds of intro-peritoneal chemo . Hugs! You may contact me if you have questions and I will tell you what I know. God Bless you!

Hope your operation has gone well today and you are pain free. You will need to take plenty of rest. I slept an awful lot after my op and rested up in front of The Crown every afternoon. Don’t lift anything heavy and look forward to feeling more energetic. When that time comes go out for walks and increase the length of your walk every day. Good luck with it all. You will find it much easier than you expected. I was very apprehensive but pleased with the results!

Thank you all again, I’m overwhelmed by your wonderful support. My surgery is next Friday, so still a week to wait xx

Waiting is the pits Emma but we are all here for you. We all know EXACTLY how you are feeling! deep breaths - you've got this! You are stronger than you imagine. xx

Hi Emma so sorry to here you're a member of our club but you'll get good advise. I haven't read all your replies but I had exactly the same as you in 2013 stage 3C. Still here and all well. Just get them to explain properly what is happening. It's quite normal procedure.

You'll have your ups and downs and it's all scarey. It's new to us but not 'them'.

Good luck with it all and best wishes. Zena

Hi Emma as others have said most of us had surgery and I can remember being overwhelmed by it all . You will be fine and in good hands . Lots of good advice been given so can’t add much more but hope it all goes well on Friday . Hugs and best wishes Lesley xx

Hi Emma. Last year at age 70 I was diagnosed with high grade serous peritoneal cancer ( had a total hysterectomy in ‘06). Had surgery for 7 cm mass which was affecting ureter from right kidney. Was in hospital only 2 days. Up and walking immediately. Had 6 sessions of carbo/taxol and am now NED. Chemo was not nearly as bad as I expected, but I did exactly what the nurses said. And called them immediately if I had a concern. I was treated in Nashville, TN - wonderful surgeon and amazing chemo nurses. Prayers for you. This is a great site.

Emmacrispins
Emmacrispins
in reply to TNkit

Wow, thank you for your response, you’ve done so well!

Was your surgery extensive? You bounced back really well x

Removed the mass and surrounding tissue and the omentum. I think I recovered quickly from surgery because it was before chemo and I was feeling fine. No symptoms of a problem until I started vaginal bleeding. And then things moved pretty quickly. My only problem was my incision for my port got infected after 2nd round of chemo. So I had to have it removed and a new one put in on the other side. That gave me a about a month break before chemo resumed.

Hi Emma, it looks like, by now, after all the responses you’ve received, you’ll know it’s standard surgery for OC.

I had already had a subtotal hysterectomy five years previously due to fibroids (uterus and cervix removed). They kept my ovaries in, as at the time my ovaries were healthy. I was 44 years old and taking my ovaries out would have started early menopause.

Fast forward 5 years and diagnosed with stage 3c high grade OC. Main mass removed (diseased ovaries) peritoneum removed, omentum removed, appendix removed, bladder lining removed and small section of bladder cut out (bladder reconstruction), disease scraped off my spleen, my liver, diaphragm stripped, sigmoid part of colon removed (I now have a stoma), small part of vaginal vault removed and some lymph nodes removed.

Had my surgery done at St Thomas’ and stayed in for two weeks to heal. Pretty radical surgery, but amazing work done by the whole team in theatre. The care and compassion I received on the ward was incredible.

It can be quite usual to experience constipation after surgery and sometimes with constipation can come nausea. Doesn’t happen to everyone but letting you know just in case you experience it. You’ll be given laxative tablets each day along with your pain killers, so that will help. My constipation was a bit painful for a couple of days, but I did have the added challenge of the stoma. Me and the woman in the bed opposite were experiencing constipation and nausea at the same time, 5 o’clock in the morning both sitting up in bed with our cardboard bowls under our faces.. it was fairly comical really. We’ve become good friends and we laugh about that morning. :)

Had to wait a little while for chemo to start as my drain site from surgery took a little while to heal over. Then 6 rounds of chemo (carboplatin and paclitaxel).

Chemo was up and down in terms of side effects and my emotions. But it’s doable... you’ll have some tough days, you’ll feel very tired (fatigue). It’s more than tiredness, it’s proper fatigue. You may feel aches and pains, shooting pains in your abdomen, possibly achey joints, and possibly neuropathy in your feet, but that’s all normal. Always Speak to your Clinical Nurse Specialist and your oncologist about the side effects you may experience as they will help and advise you on how to manage them, and of course all the amazing women on this forum will help advise too. Don’t try and do too much when you’re having your ‘down’ days. Listen to your body. Ask friends and family to pre prepare some of your meals so you’re not having to cook from scratch. You’ll get to know a pattern of when you’ll feel most tired. For me the fatigue was between day 4 and 14 of each chemo cycle. different fluctuations of fatigue during that time, so a mix of bed days or really short trips to the shop, very short walks, then during the third week of each chemo cycle I’d feel absolutely fine. If you have Netflix, get stuck into a good box set/series that you can enjoy and escape into.

First few of days after chemo infusion I’d feel fine, the steroids that you’re given during chemo infusion make you feel fine, then you’ll have 3 days of oral steroids which help. After that I’d have a bit of a dip and spend the next week resting, in bed a lot. Thankfully I didn’t experience any substantial nausea during chemo and I could eat, although in the first week and a half of every cycle I didn’t have much of an appetite. After that first week and a half my appetite came back and I was scoffing everything in site, making the most of it before my next infusion.

Expect to have moments of feeling tearful. Every first weekend after chemo I would cry and feel sorry for myself. Allow yourself to have a little cry. My mum and my partner were incredible. They gave me regular foot, leg and head massages, which really did help to feel pampered and loved.

The neuropathy in my feet started to feel really very numb after the first two infusions. I told my oncologist and they changed the dosage of one of the drugs which improved the neuropathy. I only got very minimal neuropathy after that.

My chemo has finished and my energy levels have improved tremendously. I am now having Avastin every three weeks, intravenously. It’s a maintenance drug. I have still have a very small nodule on my liver which shrank to half the size after my first round of chemo. The Purpose of the Avastin is to keep it at bay. My team are keeping a very close eye on it and they are not overly worried. I feel I’m in very good hands.

I feel strong, I feel almost ‘normal’ I’m getting out and about, my emotional state is good. Like you, when I was first told, I was in absolute shock. I was numb. I was petrified, it was all so surreal. But I’ve received brilliant treatment, advice, support and continue to do so, and I have reached a place of acceptance. I have OC and modern medicine is doing amazing things. I feel as well as can be expected and I feel very positive. My CA125 has been staying stable at 6.

Emma, everyone has different experiences after surgery and during and after chemo. I’ve told you about my experience. I hope it helps give you some idea of what to possibly prepare for, mentally. It sounds as though your surgery will be quite standard and not as radical as mine, so you’ll heal quicker. Be very patient with yourself. And when you want something or need help when you’re on the ward, don’t hesitate to tell/ask the nurses or to buzz your call button. They are there to help you. Stay well hydrated, keep drinking plenty of sips of water on the ward and during chemo drink at least 6-8 cups a day.

You’ll get through it, we all get through it. A lot of days it’ll be a breeze, and some days will be a bit of a struggle. Don’t be too hard on yourself, accept all levels of support. Make sure you get plenty of hugs from your loved ones. And plan some pampering sessions. YOU’VE GOT THIS.

Love and hugs. Lisa. Xx

Hi Emmacrispins. Good luck with your surgery and your journey.

I was diagnosed in Feb 2018 when I was a fit and active 50 yr old with daughters aged 10 and 14 at the time. To say we were shocked to the core was an understatement. But as others have said the chemo wasn't nearly as bad as I thought it would be and the surgery wasn't too bad either.

I'm now finishing chemo for a recurrence and I've walked every day with our dog, often for miles which I think has really helped me. Life has pretty much continued as normal thankfully but I may have been lucky regarding chemo side effects which have only really lasted up to five days after each dose. Stock up on bland food if that's what you fancy. My 'go to' staples are crunchy nut cornflakes, orange lollies and crumpets! Take care x

Wishing you the very best. My mom is the one who is effected by this awful disease and my best advice is to come here with all questions. In our darkest hours - this site pulled us through. You’ll find the strength you never though you had ❤️

Now am I right in thinking from your post responses that tomorrow is the big day? 🤞Firstly the surgeons are geniuses and will take out anything suspicious looking. If you can retain any sense of perspective which is an almighty task, remember they’ve done this countless times before. I hadn’t even realised I had an omentum and had to ask what it was! One of the scariest things is signing the consent form as it has to be brutally frank.

My tips for hospital are take lipsalve, hand wipes (you’ll get paranoid!), an eye mask, plain biscuits/snacks, headphones/earplugs and a bulldog clip/gripper style hair grip. Why? Because take it from me, trying to manoeuvre one of those drips on a wheelie base is a nightmare when you want the loo/shower and you won’t have enough hands to keep the tubing out of the way!

I came out of surgery looking like someone had installed a giant zipper on my abdomen. I wasn’t expecting staples (not everyone gets them- surgeon preference I think). Now it’s just a silvery line so don’t panic!

Best piece of advice. Learn from my error and don’t overdo it too soon. I thought I felt fine so went on a long walk a few weeks post surgery and paid the price.

Have a positive attitude and put your fighting knickers on! You CAN beat it!

Em

X

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