Hi everyone,: I was told when I was diagnosed... - My Ovacome

My Ovacome

15,167 members17,776 posts

Hi everyone,

SEckett profile image

I was told when I was diagnosed with ovarian cancer to go on a low fibre diet then after surgery I could introduce fibre back in to my diet. When I had that dreadful appointment with surgeon and my cns nurse I asked her if I could maybe have baked beans she was doubtful and said we’ll try it but you may need to use laxatives afterwards. Nobody has been clear in my diet and I’m confused. I also keep looking up the statistics for survival with ovarian cancer. 🙈🙈🙈🙈

21 Replies

My sister put on low fibre diet. Definitely no baked beans. Your drs should give you a list of what you can and can't have. I to looked at Google and statistics but have stopped. So many encouraging stories from ladies on here. Hard to stay positive but take one day at a time xx

A low fibre diet is not a given with ovarian or even after the debulking op. It suggests they were worried that your gut might not be working well or might need recovery time?If that’s the case then absolutely they should give you a list of what you can and can’t have.

Hopefully after debulking and by the end of chemo, this concern will be in the past. But they need to be clear why they are restricting you right now.

It’s a rocky road at the moment but there’s every chance that you will feel and be much better once your treatment has finished. Don’t google the stats, they are out of date and in any case you are not a statistic… no one can tell you what lies ahead..it could be really positive! xx

SEckett profile image
SEckett in reply to Lyndy

Hi Lyndy

The cns put me in this low fibre diet since I was diagnosed at the end of May. I am so confused as is my daughter. Sheenagh xx

I think you need to call and speak with your cns and just ask them.They need to be clear with what they want you to do.Never ever google! it won’t do you any good and will just cause you more worry and anxiety.It’s so important to think positively,the mind and body are connected,we cannot change what has happened to us,so although some days it’s hard,try to keep a positive mindset and enjoy doing things you like to do when you’re feeling up to it.x

Hi. I looked at statistics too but eventually realized how out of date they are and that each individual has different strengths and weaknesses—ie genetically. PARP inhibitors have only been in wide use for three years and their impact hasn’t shown up in statistics yet. As to diet you need to talk to your nurse and find out what’s behind the advice about fiber. When I was having chemo I didn’t feel like eating anything adventurous but usually they only say low fiber for people who have had a bowel blockage. If you don’t have issues with that or a stoma then I would think you could eat what appeals to you? Xx

Did they resection your intestine? Because they had you go on a low fiber before surgery I assume...maybe they want to reintroduce fiber slowly. Normally they give you a list fir the lst week then the 2nd then only restart your old habits. They did not do that for me in paris and I remember vividlymaybe 3 days after the big cut lunch w 2 large slabs of rare roast beef and a huge portion of spinach ...don't get caught up in survival rates they are meaningless. Just put one foot in front of the other laugh read sleep play with your pets walk a bit and enjoy life. Hugs from paris

I really do feel for you. I think we've all looked up the stats at one time or other and yes they are terrifying. But they are also out of date .

Many ladies here are defying the figures and have really positive stories.

Try to take each stage at a time if you can.....really not easy I know.

Could you be doing what you can to help prepare for your surgery? Ask for a diet sheet and eat well.

Take some daily exercise if you're up to it. A walk maybe with a family member or friend?

Cook some meals in advance to freeze or be stocking up the larder. You'll need plenty of protein after your op and you could be planning your meals. You could enlist your daughters help...I'm sure she would be delighted to be doing something to help you.

I find taking back control of what I can....even the little things can make a big difference to how I feel.

I wonder if the low fibre diet advice is precautionary?

Bowel obstruction can be a problem for some women before surgery and the surgery itself can cause cause the bowels to slow right down for a while. A low fibre diet would help with that.

Speak to your CNS, she will be able to clarify everything for you.

Do you have long to wait for the op?

Liz x

SEckett profile image
SEckett in reply to Jacky5

Hi Jacky5

I had my op nearly 4 weeks ago but still been told to continue with low fibre diet. I am confused. Sheenagh

Jacky5 profile image
Jacky5 in reply to SEckett

Oh I see! 🤦‍♀️Puzzling to still be told to stick to a low fibre diet without any specific reason then.

You can only find out by speaking to your team then really.

Hope you're recovering well.

L x

After my operation for debulking and due to bowel problems a dietician came to visit me on the ward. She gave me a small booklet for following a low fibre diet which was very useful.Perhaps you could ask to speak with a dietician.

My dietician also gave me her phone number so any problems I had then I could contact her.

Well that's not very helpful, is it, being told they're 'not sure' if you can eat baked beans... I have to say baked beans would not be anywhere near the top of my list of foods I'd be desperate to eat anyway, I remember being desperate for bacon and eggs or fish and chips when I came home from surgery, but we're all different🤗

I'm confused because, when you posted and told us what your surgeon said after your surgery, you say he said 'eat what you like', but now it seems the CNS is 'not sure' if you can. I think you may need to speak to the CNS again and ask for clarification ...

As for looking at statistics, best not, they're just stats, not you...I know how hard it is to get used to the idea that you have something that might mean you're not going to make 90 years old, but the truth is, none of us has ever known what's going to happen in our lives, we just never really thought about it before... all we've ever truly had is now, the present moment. I try to make my first thought of the day, well, I'm still here, still breathing, result... so what am I doing today.... It's not easy because it's usually nothing much at my age and with Covid around, but I try to think that way instead, though I don't always succeed.

Speak to your CNS regarding diet, good luck

Miriam

SEckett profile image
SEckett in reply to bamboo89

Hi bamboo89

My daughter is not happy with the confusion and is on contemplating on writing an email to my cns with regards to all this confusion they causing. Sheenagh xx

Hi there

I was never given any restrictions after frontline treatment in terms of diet. When I had a recurrence on my bowel I had a 2nd surgery to resect the bowel. I asked my surgeon what could I eat and he looked puzzled and said “ eat what you like”.

for the first couple of weeks I took it easy but then carried on with my normal diet. Thankfully I’ve never had a bowel obstruction but can get constipated at times. I eat a lot of fruit and veg, no meat but fish occasionally. I take a couple of senna every night and I’m fine.

Check with your CNS but there is no reason not to eat fibre unless you have a bowel obstruction.

Educate yourself as much as you can by reading the latest research etc but avoid statistics.

For your understandable anxiety I recommend a lovely book called “The Cancer Survivors Companion” by Dr. Francis Goodhart and Lucy Atkins. Dr. Goodhart is an NHS Consultant psychologist and Lucy is a health writer. This book supports and advises on practical ways to cope with anxiety , worry,depression, self esteem etc. It really was my bible in the early months/years after my stage 3c diagnosis.

Please get it, I guarantee that like I did , you will be nodding your head in agreement at every sentence.

Good luck

Kay

Oh good grief. Don't look up survival rates. I did and thought I had a couple of weeks!!! But I'm still here 16 months later, still inoperable but doing fine.Can't help with the diet, sorry, as never got to have debulking. However, before laxatives they should try stool softeners which are nothing like as drastic as old fashioned laxatives. I would try little bits of new food and see what happens. We all react differently to things. All best wishes x

Hi. I must admit that I am utterly confused as to what we should or shouldn't eat. I was taken into hospital because of a bowel issue a few months ago (in between chemo sessions). I saw a colo rectal surgeon while on the ward, and explained what my usual diet was - basically pescatarian. I asked her what was the best diet to avoild the problem again, and she just said 'it depends', and that my oncologist should refer me to a dietician. Several months on, and no appointment yet with the dietician.

I am due the debulking op shortly (if it ever happens after 3 cancellations). I am told there is a chance I'd need a stoma. I asked if I could speak to a stoma nurse about diet, and was told that there'd be a brief chat on the morning of the op. If I do batch cooking in advance, I need to know what food I need to prepare, I said. Still no-one seems to know.

I'd be interested to know why a low fibre diet after debulking. Does it not make constipation worse? And why do we need laxatives when we eat fibre, as the nurse told you? I would have thought logically that it would be the opposite? Like you, I'm utterly confused.

Hi there,

Ah....the low fibre diet! I've been on this for a year now, although I do have to admit to cheating quite often - Gail's sourdough bread being my downfall 😬.

Speak to your CNS, however it is probably because, like me, you are considered to be at a higher risk of a bowel blockage for one reason or another. My risk factor is the location of some of cancer spread and also the fact that my bowel habits have never been regular - I didn't have a movement for 13 days recently which led to a blockage and impaction.

Baked beans will be a definite 'no'. I have cheated with them a couple of times though, but followed them up with extra laxatives that day and all was well. Basically, it's about eating foods that flow more easily through the bowels without bulk or a chance that they will get caught up in a narrow section of bowel. Believe me when I say that blockages are extremely painful. They can of course be life threatening if not treated.

There are a number of diet sheets online provided by the NHS and one of the cancer charities. I'll see if I can find them to post links but it is important that you speak to your team. There are a number of different stages of diet and they ought to advise you which one to follow and anything else to avoid (I am not allowed bread as it can form a bolus). I am absolutely astonished that this guidance hasn't been given to you!!!!

Gemmyw profile image
Gemmyw in reply to Gemmyw

ovacome.org.uk/blocked-bowe...

Gemmyw profile image
Gemmyw in reply to Gemmyw

yeovilhospital.co.uk/what-c...

I find the statistics unhelpful. From the off my consultant advised not looking online. She said we are all unique and as such anyone of us will prove statistics wrong. So many options for on going treatment I firmly believe that one chemo in particular could unlock a reaction in any one of our systems, that hasn't been seen before. It keeps me positive.

I follow a low fibre diet not because I was told to by the medical profession but because my gut told me. Baked beans onions anything with skins a definite no no too. I have a very high protein diet but the only way I can keep my system balanced qand my consultant sent me to a dietician who tried to tell me to eat all the things that caused me issues I explained all my problems to her and she said stick with my low fibre no skins no nuts no seeds as it was obviously working. Good luck I have not had surgery due to cancer also on the liver and spleen diagnosed in 2018 and still here.

There is a book called what to eat during cancer treatment put out by the American Cancer Society…..it has lots of healthy recipes and different sections for nausea, weight loss, weight gain, constipation, diarrhea,taste changes pretty much everything. I even use it now for dinner party’s 😁Might help!

Debbie

You may also like...