Debulking surgery advice : Hi :) My mum has been... - My Ovacome

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Debulking surgery advice

Worrieddaughter95 profile image

Hi :)

My mum has been approved for surgery today in and MDT and we are heading to meet the surgeon Christina Fotopoulou on Monday. We are based in North Yorkshire and had asked for a referral to her based on a friends recommendation. Does anyone know what to expect from this 15 minute appointment? Is it to address any questions my mum may have or to explain the nature of how extensive her surgery will be? She is Stage 3C HGSOC diagnosed in December. She has had 4 rounds of chemo with good results. Any insight would be much appreciated :)

Thanks

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Worrieddaughter95
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Lyndy profile image
Lyndy

Pleased that your mum has the go ahead. CF is kind of famous in the field of OC surgery xx

Worrieddaughter95 profile image
Worrieddaughter95 in reply to Lyndy

Thanks Lyndy! She seems to be a real pioneer xx

Irisisme profile image
Irisisme in reply to Worrieddaughter95

…and don’t forget to write down all the questions you and your mum have, and refer to the list while at the appointment! 🤗🤗

Worrieddaughter95 profile image
Worrieddaughter95 in reply to Irisisme

Thanks so much we certainly will X

Tillymint61 profile image
Tillymint61

Hi. Just be prepared to hear a lot of scary stuff quite a bit of which won't apply. Unless it was just my surgeon, they tell you everything they MAY have to do. I think it's fair to say from posts in this group a lot people don't have to have everything done that the surgeon's says.The fact is until they see inside they are never really sure what they are dealing with. This surgeon gets mentioned many times in this group in such a positive way I think you rest assured your Mum will be under one of the best. Love to Mum and yourself. Have your questions ready. Xx

Worrieddaughter95 profile image
Worrieddaughter95 in reply to Tillymint61

Thanks for the advice. I think my mums biggest fear would be a stoma or something and she’s already worried sick about the surgery. She’s a very active person so keeping her from overdoing it after surgery will hopefully be our biggest problem 🤞 Xx

Tillymint61 profile image
Tillymint61 in reply to Worrieddaughter95

My biggest fear was firstly not even coming through the surgery and so they addressed that by allowing me to speak to the anaesthetist. Who reassured me of what they and their team would be doing for me during the op. That really helped me. Despite having to be drawn up for stoma and illiostomy I was advised if when they opened up they were able to they may be able to 'shave' the bowel of seedings on it rather than . If she has been told she will definitely have a stoma there is so much support on the ward and on leaving hospital.( Being completely brutal given the choice I would rather a stoma than the cancer. ) There are amazingly active people out there with stomas. We just don't know or see it. So difficult not to be scared. My GP prescribed a very low dose diazepam which I took leading up to op. to take the edge off my panic. Wishing your Mum well. Xx

Worrieddaughter95 profile image
Worrieddaughter95 in reply to Tillymint61

Thanks Tilly for all your insight, that’s all good stuff to know. I hope you are well Xx

Hi there!

I would just like to say your Mum is in the BEST possible hands. Christina F was my surgeon for my major debulking surgery a few weeks ago. She truly is amazing and she cares so deeply for all of her patients.

When I had my first appointment it was to meet her, to ask any questions I had. Also she informed me what to expect from surgery but let me know that they don't truly know the extent of the surgery until they see inside.

This may seem a bit worrying at the time, but Christina and her team really know their stuff and I was just so reassured by this and her attitude.

My surgery went well, they managed to remove all visible disease which was pretty extensive in my abdomen. I start my chemo treatment in a few weeks.

I hope this gives you and your Mum some reassurance. If you have any questions happy to try and answer them. 😊

All the best to you and your Mum. x

Worrieddaughter95 profile image
Worrieddaughter95 in reply to

Hi! So pleased to here your surgery went well. My mums has been described as pretty extensive too. With mention about bowel and liver resection xx

in reply to Worrieddaughter95

I had a bowel resection and coping well with it but you've got to be careful with food for a while. If that happens she'll be visited by the dietician when she's on the ward. My bowels went to sleep after the op so I was sick with it but once that was resolved everything got better and I was allowed home. x

Worrieddaughter95 profile image
Worrieddaughter95 in reply to

Any advice on what foods? :) I am hoping to be able to bring my mum high quality juices and bites to eat in xx

in reply to Worrieddaughter95

Literally back to basics! For bowel resections its a low fibre diet. No wholemeal bread, brown rice, wholewheat pasta, no fruit with skins or seeds. I literally had white toast and jam. Jacket potato (no skin) and yoghurts whilst in hospital. Its very boring to start with. I was allowed apple juice though 😊 basically the bowel needs time to adjust and you don't want to cause any blockages.

Since being home, I've been gradually introducing different foods to see how my bowel copes. Still really careful though.

Hope that helps?! x

NewtonEmma1900 profile image
NewtonEmma1900

I was diagnosed with stage 3c peritoneal/ovarian cancer in early October. Following 4 rounds of chemo I had debulking surgery done by Christina and her team two and a half weeks ago. Your mum could not be in better hands! The initial appt is short so have questions ready but she is very thorough and certainly in my case had all my notes and scans from my oncologist who had referred me to her. ( she has a couple of talks on u tube about ovarian cancer that are worth listening to). I don’t get my lab results until Monday and I still have 2 rounds of chemo due in April but initial feed back is very positive - as was commented in a previous reply until the surgery is done she won’t have all the information until the surgery.

Sending very best wishes.

rosebine profile image
rosebine in reply to NewtonEmma1900

Echo this about not knowing the extent until they go in. I was found to have fibroids and a tumour on my appendix which had never been flagged up prior to the op! Professor CFhas a lot of fans on this site !

Worrieddaughter95 profile image
Worrieddaughter95 in reply to NewtonEmma1900

.This is all super helpful thanks so much Emma! Hoping you have a fantastic outcome re lab results. The waiting has been the worst part of this journey so far in my opinion xx

Rosado22 profile image
Rosado22

I hope it goes well. Just v be even listening to this professor on YouTube. Best wishes

Worrieddaughter95 profile image
Worrieddaughter95 in reply to Rosado22

Thanks so much. I have watched numerous videos and must say I am already in awe of her! So much respect for women who are at the top of their game whilst simultaneously having a kind nature.

in reply to Worrieddaughter95

I was a bit starstruck when I met her! I didn't know beforehand that she was going to be my surgeon. I'd watched videos of her and like you was in awe of her. I remember sat in the waiting room with my husband and she came out of her office for something. I turned and said to him, "That's her, the amazing lady I've watched videos of! If she calls my name I will be so happy"! Sure enough, she comes out and calls my name. I shouted YES and punched the air! Much to my husband's embarrassment 😂

Somebody else has already said it but she oozes confidence! That's what you and your Mum need. It really put my mind at rest and I just knew there and then I was in the best hands. She's not shy to hold your hand too ❤

Wishing your Mum all the best with the surgery. I was also told to up my protein pre surgery as it will help with the recovery. x

lesleysage profile image
lesleysage

Agree with Irisisme, make your list of questions, however small or long! Prof CF did my secondary debulking in 2013 and it definitely saved my life. As everyone says, she and her tam are 'Simply the Best'. Warmest good luck for the outcome.

Worrieddaughter95 profile image
Worrieddaughter95 in reply to lesleysage

This is music to my ears thanks Lesley! I hope you are keeping well X

Newbie_2020 profile image
Newbie_2020

Your mum is in very good hands. I hope all goes very well. The appointment could be for an explanation of what Prof sees on the latest CT Scan, the surgery, and also to answer your questions. The ultimate aim is to remove all cancer, if possible. This can only be known during the operation. The treatment afterwards depends on that. Definitely, they'll be a two more rounds of chemo and possibly followed by some Avastin or PARPs for maintenance.

There may be a shielding time until the surgery takes place. Meanwhile, it helps if your mum loads on lots of proteins to boost her albumin levels. They help a lot post surgery.

Rosado22 profile image
Rosado22 in reply to Newbie_2020

Yep my surgeon told me to eat lots of protein too.

Worrieddaughter95 profile image
Worrieddaughter95 in reply to Newbie_2020

So it seems everything you have said was spot on :) she mentioned mum has a tumour on her messentry? Which depending on exactly where would be tricky possibly. She mentioned resectioning and stripping the peritoneum and said my mum had had a good but not great chemo response but the surgery will be her prognosis 🤞🤞 she said she is young and very fit and well and has a good attitude to help get over the surgery etc quickly xx

Newbie_2020 profile image
Newbie_2020 in reply to Worrieddaughter95

Excellent news 👍👍I hope Prof will be able to remove all cancer. I also had a tumour on the mesentery and she did a resection of the bowel with stripping of the peritoneum.

Recovery, I’d give 10-12 weeks rather than anticipating less and getting frustrated if it doesn’t happen.

Thanks for the update xxx

That makes a lot of sense re shielding so thanks for the heads up. We will up the protein too - thanks! X

win_56 profile image
win_56

Christina did my second debulking operation on December and successfully took out 3 cancerous lymph nodes that were Infront of the lumber in a clusters. One was the aorta lymph node. My surgeon in Birmingham would not take th em out nor the Royal Marsden as said too dangerous. She was the only surgeon willing to give it a go and she was successful. Shee is amazing and is such a lovely warm person your mom is in the best hands. Christina and her team are amazing. Wishing you all the very best. Xxxx

Worrieddaughter95 profile image
Worrieddaughter95 in reply to win_56

Thanks so much, wow that’s quite amazing!! Had she explained beforehand how difficult it would be? X

win_56 profile image
win_56 in reply to Worrieddaughter95

She said it's not an easy operation but it's doable and she has taken these lymph nodes out before. A few days after the operation she came to see me on the ward and said it wasn't easy as there was a lot of scar tissue there and blood vessels wrapped around the nodes . It took her about 5 hours but she did it. She is one of the best surgeons in the country in my opinion. The aneasethist said to me she is the best surgeon he has ever worked with and one of the best in Europe. Your mom really is in good hands. When I went for my consultation she just oozed confidence.

Differentforgirls profile image
Differentforgirls in reply to win_56

This is fabulous. Isn’t Prof CF incredible? Xx

win_56 profile image
win_56 in reply to Differentforgirls

She sure is.

LesleyGB profile image
LesleyGB

This woman sounds amazing! Good luck with your mum. I was worried about a stoma - everyone on here and the stoma nurses were so reassuring. I got marked up for it but it wasn't necessary. Fingers crossed for you mum - I am sure you are wonderful support for her. x

Alfiepop profile image
Alfiepop

Hello. Firstly how is your mum and how are you? I’m hoping you might be able to help?I have primary peritoneal cancer of ovarian origin and am due to see a gynae surgeon at my local hospital in Suffolk to discuss debulking surgery that I have been offered.

Having read your post and the replies I’ve researched Prof CF and am considering asking about referral to her as an NHS patient. Please can you tell me if it was your mums oncologist that made the referral or a different clinician/GP?

Kind wishes

Lisa

Worrieddaughter95 profile image
Worrieddaughter95 in reply to Alfiepop

Hi! She is in remission and back to work next week thanks for asking ❤️ So because my mum was stage 3c she was set to have chemo surgery then chemo. She ended up having 4 chemos then surgery then 2 more after (purely due to MDT meeting scheduling and making sure debulking surgery was no later than 5 weeks after a chemo session) I had mentioned her to my mums oncologist from the get go and explained that we wanted CF to do the surgery so what happened was after chemo number 2 was going ahead my mum was very doing well and he put the wheels in motion for a referral. This referral meant in addition to being discussed in her local tumour board after her chemo sessions she would be discussed in Prof Christina’s too. At both tumour boards my mum was deemed operable after her neoadjuvant chemos and we swiftly got a call from Queen Charlotte’s hospital to come and meet the Professor. You have the right on the NHS to choose your surgeon so we headed down for surgery in April and stayed for 2 weeks. Any more questions just send me a message X

Worrieddaughter95 profile image
Worrieddaughter95 in reply to Worrieddaughter95

I will add that I know she is in incredibly high demand so do ask about this sooner rather than later if you are already operable. Our local hospital is an accredited gynae cancer centre with excellent surgeons and I’m sure they would’ve done wonders with my mums surgery it was just that I had also read about Christina X

Alfiepop profile image
Alfiepop in reply to Worrieddaughter95

Thank you for responding and so pleased to hear that your mum is doing so well. I think I may have missed the boat..as I have been offered surgery sometime in early August and am due a consultation with the surgeon on 22/07. Might just contact the secretary to glean a bit more info though.

Worrieddaughter95 profile image
Worrieddaughter95 in reply to Alfiepop

Worth a try for sure. Being operable from the get go sounds like a good thing too x

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