I’ve seen the surgeon today and am more scared than ever now.

[Tay100]

I am in shock as I have just seen the surgeon who has told me that although he is going to operate on my ovarian cancer. It will be a full hysterectomy and debulking. He said that it’s in both ovaries, and very large and complex which is something my consultant has never said to me. He is willing to try and remove it. He said that I may need a stoma afterwards but he will decide that during the operation. The thing that really shocked me was he said it was incurable! No one has ever told me this before. He said he can’t say how long I will have after the op, only that it could be months or years. Does anyone at all have any experience of this being said to them as I’m so scared now. xx

[Lindaura]

Dear Tay,

I am so sorry that you have been hit with this information in such a sudden manner.

I was very lucky to have been given loads of info from the MacMillan Cancer charity, which I read studiosly, as well as doing my own research on the internet.

I still am learning new facts and new possibilities even after the end if my treatment.

The most difficult thing to hear, however, which I did hear at my first oncology appointment, was that there was no cure. Treatment can stop the cancer in its tracks, but there is no set guidelines for a cure. Some ladies live on with no recurrence for 10 to 20 years, or longer, while others have to keep fighting recurring cancers.

Now, your de-bulking operation is a big deal, because your surgeon is going to try to remove every trace of your cancer. He will look at all your organs to make sure there are no lesions on them. The warning of a possible stoma is given to all of us, just in case the cancer has compromised our bowels, but most of us don’t have this and our operations are successful.

Your operation is serious surgery, so you have to give yourself time to recover and not rush things. Everyone’s experience is different and there is no reason to think you will be worse off than anyone else.

Soon this episode will be behind you and your last chemoes will begin and your cancer will be destroyed.

Try to research all your future treatment options, genetic testing and ways of eating that can help your body fight off cancer.

I wish you the best of luck,

Best wishes,

Laura

[Hidden in reply to Lindaura]

Hi Tay I totally empathise with you despite a number of appointments with oncologist etc it took a while for me to understand that there is no cure & have accepted (as much as I can) that I will have to live with this for as long as I can, someone said once on here that she thought of it as living with a chronic disease and it is. I had full surgery & debulking & I did have to have a Stoma because my bowel had been compromised but I’m still alive & living with it, but hopefully you won’t have to have one they warn all ladies but very few have to have them.

I know it is easier said than done but try not to look to much at the big picture with all it’s what ifs, take each day week as it comes & just focus on feeling as well as you can. No one knows what is around the corner a friend of mine was told today he has to have major open heart surgery I only saw him on the 27 June & he was totally unaware then of how sick he was & now his world is upside down.

The operation is like running a marathon try to eat high protein foods as much as you can to build your strength and don’t overdo it afterwards give yourself time to heal, and keep a positive mental attitude x

[Tay100]

Hi Laura, thank you so much for your reply. I'm not sure why I wasn't told right at the beginning like you that it's incurable but knowing some ladies have gone on for 10 or 20 years has helped a lot. Also the fact that there are other treatments should the worst happen and it comes back. I will have a look at diets that may help, can I be cheeky and ask if you have found any sites they maybe useful as a starting point?

Best wishes

Tay xx

[Lily-Anne]

I think that they will try to be as honest as possible, but really right now your concentration is on the operation and recovery. The kinder you are to yourself the better the recovery time. The fitter you then are the better the fight. Tomorrow isn't promised to any one of us whether we have cancer or not, it just suddenly feels as if we have a sell by date. We don't. Or if we do mine is now in the rotten eggs pile.

One day at a time, plan each day is if it is your last and live your life as if you will live forever, best advice I've been given.

Make some plans for a treat for yourself, after surgery and after each bout of treatment it'll take your mind of things and give you something to look forward to. It doesn't have to be doom and gloom even though it may feel like it at this moment.

Chin up

LA xx

[Janet235]

I would like to give your surgeon a good shake! HE? Really should have been more sensitive describing what he is going to do, possible outcomes and future scenarios!

My surgeon started off by asking me what I understood was going to happen to me etc ( I was pretty clued up at this point so nothing came as a big shock)

Yes, they have to give you worse case scenarios.. and explain everything that might happen ( otherwise you can see how easily they could be sued!)

I think on the whole they are - have to be - more forthright that the oncologists.

What you describe though is perfectly 'normal' as far as OC operation is concerned... it's a big deal and will take sometime to recover - I actually came through it better than I thought.. maybe you will.

As for ' incurable' it's a harsh one to get your head around... the more you read the various posts the more you will realise that most ladies with OC have chemo treatment, surgery and often go into remission - maybe a few weeks, maybe a few months and if you are one of the lucky ones - years....then the BIG BUT returns and you have to start all over again.

Try and stay positive and optimistic - there is a lot of life, loving and living to be done. O.C. Has to be a background part of it...

Love and hugs... deep breaths, you can do it!

Janet 🌈

[Hidden in reply to Janet235]

Brilliant reply Janet, Tay100!

I had the opposite, I was drip fed info so i’d formed the worst possible scenario myself before I was given official line, which actually was never fully articulated. I’d definitely say your consultant needs a shake!

I had 20 months remission after my operation and first line chemo, resumed work (a new job 2 days a week) 14months later and have managed to work during my second line treatment.

My spread was wide and outlook bleak at the time of diagnosis, the description you give of your situation is very similar to mine.

I am happy and although I have some days where I do feel a little over whelmed i’m More focused on life and less on the disease. Very different to the all consuming fear I felt at the beginning of this journey.

I send you tons of love and wish you all the very best for your op.

Lisa xxx

[Tay100]

Thank you both so much for your replies. You are right no one knows how long they have. I’m going to take this one day at a time and concentrate on getting stronger and fitter before the op. I’m also going to do some research around diet and see if that will make a difference as well. Keep well, big hugs xx

[Seasun36-uk]

Hi Tay,

Yes I was told the same & was in shock! Prove them wrong! The new treatments & research hold out more hope than ever before, so take heart. ❣️ I am in remission a year after my debulking op.

Diet - in a word - is to eat as naturally as possible, especially lots of fruit & veg. There are some good books, if you browse on Amazon. There are lots of supplements to try, but most Oncologists advise to finish post-op chemo first.

Yes do get strong pre-op (walking etc) and look after yourself post-op.

Very best wishes, Linda 🌼🌸🌼🌸🌼🌸

[Alifit]

Hi Tay, please remember that you are not a statistic - you will follow your own path through this. I think the most destructive thing is that after diagnosis the tendency is to worry so much that you fail to enjoy the simple things - or even the adventurous things. You can’t and won’t forget that you have ovarian cancer, but in my opinion, it’s a bit like terrorism - if you let it bring you down then it has won.

Please keep communicating through this forum - although you may see sad and angry stories, you will also read much uplifting stuff and stories of hope.

With my best wishes, Ali x

[Tay100]

Thank you all so much for your great advice. I’m starting to get my head around what I have been told today, and thanks to you all am feeling a little more positive now. Big hugs to you all xxx

[Hidden]

I was told it was incurable right at the start. It was devastating. I honestly doubted I would get to 5 years. That was 12 years ago, and I'm currently having my longest remission. Admittedly, I have relapsed twice, but this was easier to bear because I knew I couldn't be cured. I have focussed on remission instead. It really is impossible to know what lies ahead, so once the dust has settled (and this can take some time) you will find ways to live with uncertainty. Good luck xxx

[Angie-69]

I feel your pain too. Was told a few weeks ago have less than a year maybe months if bowels play up again as wouldn't survive surgery for that even tho feel fit and healthy most days. Doesn't matter what anybody tells you it hits you thinking about it when you don't expect it to. Try stay positive and as I keep telling everyone and I believe it 70 per cent of the time....ima be the one they read about in years to come....i will do this one way or another but we are human , terrified of the unknown and very vulnerable to this evil disease. Completely normal to be feeling this way...be weird if ya wasn't I think. Take care and stay as positive as poss thru this journey hun were all backing you xxxx😗

[Irisisme]

Hi Tay,

There have already been great supportive posts and I would just like to endorse them. I was told in a more compassionate way than you were but, yes, I’m incurable too. I didn’t get a stoma because there was so much seeding all around the bowel it wasn’t worth it, surgeon said he’d have to remove my entire bowel! So I live with the little blighters.

All that I’ve been through I’m still here and life still gives me pleasure. It’s a shock when you are told what you could be facing but OC can be lived with.

If you want to be reassured that you can live with OC read my profile- and there are lots of ladies who have lived with OC a lot longer than me!

Good Luck and keep posting- we will share your journey with you.

Iris xx

[781895]

you can also try the cancer commons website: cancercommons.org/

It is a non-profit website with a community of scientists, doctors, patients etc that helps identify options for treating an individual’s cancer. They are a great support and will help you if you have any questions!

Hope this helps x

[Katiebairdie]

Hello, my story is similar to yours. I was in hospital having suffered sepsis and due to be released the next morning. My hubby had been for his daily visit and gone home. At about 7.00 a doctor came to see me and told me the news. You have cancer and will be having surgery in six weeks. After that chemo and you will lose your hair, also you will having a stoma. You have 5 years left. Then he went leaving me with a box of tissues. How is that for bedside manner. There was not even a nurse around to soften the blow a little.

A few months later after chemo I had no hair and a stoma. Wondereder if life could get any worse. However my hair grew back and had a stoma reversal.

Four years on and I feel absolutely fine and determined to prove that horrible doctor wrong.

Try to keep your mind and positive things ( I know it is difficult) and enjoy each day. Perhaps you could get away for a couple of day.

Best wishes and positive thoughts coming to you.

K

[Chasinglight]

Dear Tay

I'm so sorry that you're going through this. Please try to keep in mind that miracles are very possible and happen every day and there's no reason why you shouldn't have one. Stay positive and know you will overcome this and you will. Please don't give in to despair. I know it's hard, believe me I know, but if you believe you'll beat this, you will. I have a friend who's had cancer seven times in her bladder, twice in her lungs, stage 2 and stage 4 and ovarian cancer that spread to her stomach in her 20's and she turned 83 the end of June. Each time she believed she'd get well and she did. Eat healthy, exercise, and have connection with your family and friends. i'll keep you in my prayers. God bless you always. You're stronger than you know

[Elfed]

I had 2 shocks while going through my cancer treatment, both given by my surgeon, I thought I was going for a routine hysterectomy and was told it was a lot more with debulking and told I may end up with a bag, which was very scary not knowing what I was going to wake from the operation like. It all went well, no bag, just 12 inch scar down my front. At post op, I was told it WILL come back, which knocked me for 6, as no one had told me that, but it all made me stronger in my view of enjoying life to the full. My dad died of a heart attack at 58, he didn’t have a chance to fulfill his dreams in life. I have and I am. The only difference now is I don’t make plans for the future, I enjoy the here and now.

[Tay100]

Oh my goodness ladies, I am overwhelmed by your advice and support. You have all been through so much! I am going to take a few days to let this news sink in and then put my positive pants on. It’s really helped reading your replies and knowing that it is possible to live for a long time with a good life. I am going to take your advice and eat healthily, and think positively. My operation will be in August at some point, and although scared, I know I’m going to get through it the same as you have done. I’m grateful to have found some new friends that I can talk to who have been there and know what it’s like. Big hugs to you all xxx

[Hertsmum]

Hi Tay sorry you were given this news so insensitively and I know it’s a horrible shock. I was told initially there was 25 % of it not coming back after surgery and chemo but if it came back it would be incurable. It may depend on the stage though. Anyway, that was bad enough for me at 48! I thought the world had ended but since then despite recurrences I have done so much, travelled, shared loads of happy times with my family and hubby and strengthened friendships and relationships. It is tough to live with but new treatments are coming along which might be less harsh. I wish you strength and positivity for your journey. Love, Madeline xx

[juliamillen]

Sounds like you have been treated very bluntly. I have been told to see it as a chronic illness. I had a total hysterectomy and debulking just for Xmas! I was surprised how little pain I was in afterwards. My CA125 is now 16 and I am doing gentle circuit training! Hard to imagine after so much weakness. I hope you make a good recovery. The anticipation before the op was worse than the event. Expect to sleep a lot after it and do your physio. All the very best

[bluepeterella]

I had the same message from my surgeon before my op last September. My GP friend told me to ignore it, as surgeons prefer to give you the worst possible news so that when you come round and find out you are okay you see him as a hero and saviour! There is possibly some truth in that . I was also given a date to attend counselling and information about my stoma-to-be. I refused this on the grounds that it's pointless having counselling for something that might not happen, and I would contact them if I needed them. Luckily no stoma - and I did think my surgeon was marvellous to avoid it Who really knows how much of a risk there was, but I still think it's best to be informed of not only the worst but also the best case scenarios. Don't confuse incurable with terminal and try to think of it as a lifelong disease like diabetes. I might be classed as incurable but right now I am fit and healthy and doing everything I want to be doing.

[tara108]

It can be very shocking and overwhelming and also very emotional when this happens to us. Please take your time and ask whatever you need on this wonderful site. Everyone has said what I would say so just wanted to let you know I am thinking of you and sending hugs from Australia.

[bamboo89]

Awful news, isn't it, such a shock. My surgeon didn't actually say I was incurable, but thought he could get me another five years if I had the surgery and adjuvant chemo. That figure of 5 years disappeared in a puff of smoke once the surgery was completed however, largely due to the original ovarian cancer's differentiation into another form.

In regard to your mentioning diet, according to the oncology professionals, it has no impact on cancer, and particularly not on ovarian cancer. You might want to take that at face value, or decide to do some research and take a different route. I did loads of research (exhausting) among the plethora of so called alternative treatments for cancer, including diet. Some of them are a bit bonkers and don't make sense - the bicarbonate protocol is aimed at making the body less acid so cancer won't thrive, but all you're going to do with that is have very alkaline pee; the body maintains its ph at all costs, otherwise we'd die, so it can't be altered, and parts of the body are more acid than other parts naturally. The business of sugar 'feeding' cancer is another example; as everything we eat turns to glucose because otherwise the body can't use it, unless you're not going to eat anything at all, the collective sugars cannot be avoided. However, that does not mean that extracted sugar in the form of sweets, sugar in your coffee and so on should not be excluded as far as possible in terms of general health and improved immune function, but the thing I discovered and have come to reluctantly accept is dairy is a no no, all of it, from yoghurt to milk to cream and so on. I do eat a little butter very occasionally, but otherwise have excluded it totally. There is some evidence it's not something anyone with cancer should be consuming (Patrick Holford 'Say No to Cancer', Dr. Greger, NutritionFacts.org, Dr. David Servan-Schreiber 'Anti Cancer; A New Way of Life) and thank heavens the supermarkets are chock full of alternative milks like almond, oat and so on.

I occasionally have a cake, maybe every 4 weeks, I eat an egg or two fortnightly, a little oily fish fortnightly, but otherwise stick to whole food plant based, which includes leafy greens, vegetables, fruits, whole grains, legumes, beans, plenty of milled seeds, especially flax seeds, walnuts, almonds, pecans and coconut; creamed coconut, dessicated, whole coconut, natural coconut yoghurt, the latter being a formerly undiscovered delight!. For a treat or dessert, I'll buy the Coyo one... This is not quite the same as vegan - they still eat white refined flour and sugar, and always bear in mind, vegetarians and vegans still get cancer, just not so much as the rest of us. There's a site called Nutritionfacts.org, started by Dr. Greger in the States; all his information is backed up by scientific research. Much of it is not relevant to cancer particularly, though some is, but aimed at keeping your immune system as healthy and fully functioning as possible.

One thing I can tell you - switching my diet was one of the best ways to lose weight I've come across, but I did not really want to lose weight, which is why I included all that coconut, just to get the extra fat and calories. Ironically, it's also done quite startling wonders for my cholesterol, which was very high and now, unbelievably in just 6 weeks, is halved, which should mean I'll live healthily for longer, not that its much use to me of course! I suppose not eating all that brie and cheese generally might account for that; although I now don't eat meat other than very occasionally, I never ate a huge amount before anyway, being mostly a fish/shellfish lover. Cheese I missed hugely - but then I found Nutritional Yeast flakes, so I no longer dream about brie...

If you are going to research, don't take everything you see on the internet seriously - I'm always looking for the evidence rather than just anecdotal beliefs, so the writers and presenters I mention above back their stuff up with evidence. But changing one's diet, including or excluding certain things, at least makes one feel like you're doing something to help yourself, and it might just win you more time. If you decide to have chemo though, all bets are off regarding diet... I feel you should eat whatever you can manage during that treatment, and, if you feel its worth changing your diet, do it after chemo's finished.

I'm sorry you had to join this club - none of us wants to be a member, but life has dealt us these cards. I wish you every success with your treatment, and remember, ultimately, no one gets out of here alive, cancer or not, we're all essentially terminal the moment we're born, but we don't really connect with it till something like this happens. You'll find plenty of support on here during this difficult journey.

Regards

Miriam

[Irisisme in reply to bamboo89]

Hi Miriam and Tay,

That is a lot of research, Miriam! However, we are all different and if a bowel obstruction is a risk it may be that a person needs to be on a LOW fibre diet ie NO leafy/stringy veg etc. and personally, as a lacto-ova vegetarian, if I didn’t eat dairy I would have a problem as I can’t eat nuts and seeds and pulses!

We can all be in control of our diet though, and I agree that It does help us if we feel we are helping ourselves. I like to feel in control.

I am also so with you about checking out the evidence; scientific evidence, backed up by controlled trials. Tay, you need to be so careful about what you Google, it can help but can also be wrong.

Stay strong,

Iris xx

[bamboo89 in reply to Irisisme]

It sure was, weeks and weeks of it, I have to say it was utterly exhausting sorting the wheat from the chaff, cos there's plenty of chaff out there.

In respect of what you say re diet, obviously everyone has to be careful - we all may have different allergies or intolerances when it comes to food. I was on a low fibre diet (which I call a 'white' diet, lord its tedious) for 4 weeks initially, but thank heavens, once the bowel settled from the surgery, I didn't have to stick to it. I believe (though I could be mistaken) that bowel obstruction is more likely during chemo, and at that time, as I said, I think people should eat whatever they can bear to; I am also aware there is increased risk ongoing just from having cancer and it may be, at some point, I am not able to eat fibre as I do currently. There are foods that I could/should eat on this new way of eating, but don't because I know they give me trouble - citrus I have to avoid because it causes a crippling flare up of arthritis in my fingers, and I have to restrict intake of apricots and nectarines for the same reason, but by and large, I've been able to eat most of these old and new (to me) foods.

There's a range of other stuff I can't take much of because of being on blood thinners - turmeric, serrapeptase, some fruits (cranberries particularly). limited berry intake because of the potassium content, and various herbal remedies, so I tailored what I chose to do for myself, and inevitably had to exclude some things, as I'm sure others will need to, if they can adopt this type of diet at all.

[Caroles1]

Hi love,

That makes me angry!

I am nearly 4 years out after de baulking and 6 months of chemo and have never had the c word mentioned to me let alone the incurable word, it’s all nonsense.

What will be will be, we are all different and I for one am not going without a fight!

By the way, I am still free from cancer and getting regular checks👍

Carole xx

[ZenaJ]

Whenever I ask I can never get a clear answer so I like to think I could get run over by a bus tomorrow or I might not. No one knows. I live every day and plan for tomorrow either way.

I've heard other cancer patients say they've been told there's no cure and most are still here.

I send my best wishes xxx

[Maus123]

Late to the party, sorry (lost my original reply a few days ago, in the inter of nets).

I know a surgeon who claims that surgeons are paid to be butchers, not politicians.

Don't be disheartened. That conversation prior to surgery is extremely tough. You will inevitably just come around to the fact that your life is in the surgeons' hands, and that you can trust them to do what is best for you and no more than is necessary. They won't fit you with a stoma unless it is your best chance for recovery. And whether or not the tumours return afterwards, is on a leaf of the book that has not yet been written. The chance depends somewhat on the outcome of the surgery as well, and even then there is no accurate way of predicting an individual person's paths of convalescence. I would wait for the post-op pathology, then the end of chemo and related ca125/scan etc values.. and only then I would ask the oncologist/consultant what the chances of recurrence are for me, if I wanted to know.

But it all sounds super scary prior to surgery. I almost walked out of my own pre-op 'pep talk'.

If you've already had the surgery, I hope you are recovering well and above all taking it easy. All the best. Maus

[Tay100 in reply to Maus123]

Hi Maus, that makes perfect sense. With the help of all the lovely ladies in here I have calmed down and realised that it was put across in a very harsh way. I’m going to stay as positive as I can, eat good food and rest and play.

I am a little nervous about the operation which I know have the date for ( 22nd August). As you saw though I’m in the hands of the surgeon who told me he was very, very good so fingers crossed.

Thank you so much for your help, take care xx

[Maus123 in reply to Tay100]

Glad to hear that.

That's the most important thing for the surgeon, so you'll be in good hands, phew.

Good luck on the 22nd of August! Hugs, Maus.