Second surgery in london

[Bettyxxx]

Hello everyone x

Just thought I would share my experiences of second surgery because I know there are a couple of ladies ready for the same xx

I was told in early December I had a 8-10cm recurrence on my bowel very close to the rectum and that I might be eligible for second surgery as the new data (although not published yet) suggests second surgery can help. I would have been 4 years clear in February. The place of the cancer meant it was likely I would be given a stoma, the closer to the end the higher the risk apparently xx.

As we live in yorkshire there was a limited skill set and after following advice I read on here I saw a lady in London I know some of you have also seen. She was amazing so reassuring and keen to operate. I am normally very well walk the dog every day etc.

She felt that you rarely find just the one spot but lots of smaller ones as well and she wanted to open the whole abdomen again for a good look around 🤢

I think I was more terrified before hand this time as a little knowledge and all that 😂

I went into hospital on the 9 th for lovely bowel prep and I had my op exactly a week ago as now. I came round and fully expected her to have found lots of lesions but no she found just the one and she said it was smaller and less concerning than the scan suggested (how often do we hear that). Most importantly no stoma amazing!

It seems to me that I am recovering quicker this time, less pain although the scar is bigger. But I guess no hysterectomy etc like last time must make it easier to recover. I know it's only a week and I have 37 staples and as the bladder is being stubborn I still have a catheter in (any advice here would be useful) grr. But I just wanted to post and say if you are considering second surgery maybes it's not so bad?

I know I have a long way to go with chemo etc but I feel very privileged to have access to a forum like this and be able to discuss 'other options' and see how well, or not others are doing xx it's real life it's our real life and difficult to explain to others, living with the fear of recurrence, daring to hope, the ups and downs we face all the time. Well my pain killers are calling so I am off just wanted to say what a good morning everyone ...... we are still here 😀

Lots of love Diane

[harpist_UK]

Wow, just wow ....!

[January-2016-UK]

I echo Harpist, Wow! So pleased for you.

[Katmal-UK]

Aww Diane I am so pleased things went well for you and it's reassuring for other ladies who are going along the route of a second op. I hope and pray I never need to but who knows! I will certainly keep your words in mind. Best Wishes for your recovery. Kathy xx

[Hidden]

Brilliant News. Speedy recovery.

just a question-Did you have to pay for this surgery?

[Bettyxxx in reply to Hidden]

Hello mazzgib

No it was on the NHS my oncologist agreed to it apparently she said the desktop trial had finished (I think but don't quote me ) and shows favourable results for second surgery, although it's not published yet. She said I was entitled to go anywhere I wanted for second surgery. I saw the London doc on 6th December and had op already. She says in Europe second surgery has been the norm for a long time but (quite rightly) we need to be evidence based in the uk. Xx

Diane

Ps forgot to say I got home day 5

[Hidden in reply to Bettyxxx]

Thanks for that information. Always good to know what other ladies have managed to sort as a way forward. I wish you much love and strength for the future x

[LittleSan]

I was considered for the Desktop trial for surgery on recurrence but was told my hernia repair may complicate things. I also had my daughter's wedding coming up and reluctantly decided surgery was probably not my best option. I've always wondered if I made the right decision.

Speedy recovery to you. Keep us posted. Xxx

[Bettyxxx in reply to LittleSan]

I guess none of us know xx we can only act on the evidence and advice we get at the time, and the decision we make then is the right one.... cos you can't go back xxxx

[Sunfleury-UK]

So very glad to hear your news and I wish you a speedy recovery. Take very good care of you, best wishes, Sx

I think that being able to hear of new developments and pioneering consultants is such an important thing to be able to share on this forum. I understand that Ovacome are going to re-evaluate the forum guidelines in this New Year including the restrictions preventing being able to mention names. I personally feel strongly that when done in a positive, responsible and respectful way way eg to find the most appropriate person to seek a second opinion from, this would be of great benefit to members. I shared my views a little while ago with OvacomeSupport TheOvacomeTeam and it would be good for as many others as possible to do the same so that members can have their voices heard within the review.

-The value of getting a Second opinion/ Desktop trial & radical surgery for recurrance are all discussed with some key people involved in the treatment of ovarian cancer in Ovacome's Autumn 2017 issue. Proffessor C F who has been at the forefront of this surgery in the UK is interviewed.

Link here ovacome.org.uk/news/ovacome...

[Bettyxxx in reply to Sunfleury-UK]

Hello sunfleury

I agree with you and will follow your advice too

Diane

[January-2016-UK in reply to Sunfleury-UK]

I agree with you and I'll do the same.

[Nicky100 in reply to Sunfleury-UK]

I totally agree. This information needs to be shared and can save people’s lives.

Thank you for posting this. So important.

[Purple-iris]

Amazing Diane and Thankyou for posting so inspirational and yes totally agree about how great this forum is to share experiences and knowledge. It’s a lifeline to connect with others that totally understand what it’s like living with this disease on your shoulder.

So glad your secondary surgery has been successful and wishing you a speedy recovery . Love and best wishes Kim x💜

[Joanie12]

Wow Diane, you are fantastic and are doing marvelous with the sounds of things, keep it up. Great to hear you took your concerns to this lady in London, thought st James in Leeds would have had more knowledge, that's disappointing but the results you got are truly amazing!! Well done you!!! Onwards and upwards, keep us informed of your progress xx prayers and good wishes flying your way xx joanie, leeds

[Bettyxxx in reply to Joanie12]

Hello Joanie

To be fair they may I am nowhere near Leeds xx but in North Yorkshire. After we met this lady my husband would not consider looking elsewhere xx

[Irisisme]

Thank you for posting, Betty, this is good to know (just in case). Here's hoping your recovery is speedy xx

[Bettyxxx in reply to Irisisme]

Thank you x

[Lily-Anne]

The prof is so nice. I had surgery when I recurred in 2015 it was also isolated the treatment was shadowing the trial desktop 111 which was measuring surgery then chemo over chemo only. The results are favourable for secondary surgery definitely and got me 18 months remission. Getting approval isn’t always easy so definitely going worth going to someone who is in favour of if

Wishing you a speedy recovery power to you 🥂

LA xx

[Bettyxxx in reply to Lily-Anne]

Thank you xx how are you doing today xx

[Lily-Anne in reply to Bettyxxx]

I feel brighter today maybe having some weetabix helped 💪

Xx

[Bettyxxx in reply to Lily-Anne]

They fed me rice crispies like a blast from the past and I really enjoyed them xx

[Hidden]

Just fantastic news, take it easy though don't overdo it same as hysterectomy you need time to heal

[ShropshireJo]

Delighted for you. Thank you for posting such positive news 🌼🌹🌻🌺🌸 Jo

[Nicky100]

If this is Prof C you are referring to, yes she is incredible and I would provably not be here now was it not for getting a second opinion in London and then seeing her.

Your operation sounds huge too, but I am so pleased that it has gone so well and you just have no stoma. I was terrified of that too. I hope you keep getting better and stronger. You appear to have a determined attitude which will help you massively!

Love Nicky xx

[Bettyxxx in reply to Nicky100]

Yes it is the same lady amazing woman. Lovely to hear from others who have seen her too, determination left me yesterday afternoon ha ha but today its back lol ups and downs xxx

[Zena41 in reply to Nicky100]

Hi this is amazing. I’m going for my first surgery next week with the lovely surgeon 🙏

[Bettyxxx in reply to Zena41]

Hello zena i cant say enough good things about her and her team xx the hospital staff were lovely too what day do you go in? Pm me if u want xx Diane

[Cropcrop]

Firstly I’m so pleased you were able to have your surgery and that it was successful and with such a positive outcome. This lady surgeon is such a forward thinking valuable weapon in our arsenal against our common enemy.

Secondly thank you for such a lovely inspiring post, you have given so much encouragement and positivity to any ladies awaiting a possible second surgery and also to any of us who may have to go down that particular road in the hopefully very distant future.

Thirdly and most importantly, I wish you a really speedy recovery and hopefully a very healthy and happy time to come.

Take lots of care and recover well lovely, big gentle hugs and love ❤️Xx Jane

[Seasun36-uk]

Well Done Diane! Keep pressing on with a mix of rest & little spurts of activity, warm drinks etc & generally being spoilt, as you should be after a big Op! 🌸🌺🌹🌷 I read a book by an American lady who had surgery first, then chemo, then had a 'second look surgery'. I wonder if this is common there....I think I prefer our way 🙂. Sending all good wishes, Linda xx

[Nwji]

Can you tell me the name of the lady in London as I have a similar problem.

A Evans

[Bettyxxx in reply to Nwji]

Hello there, I don't think we are allowed to add names but in the 'search my ovacome' bar at the top if you put autumn newsletter it gives u a link to follow. I found all the info I needed on that article called back to theatre x or private message me if you want more info xx

[Sunfleury-UK in reply to Bettyxxx]

Link is here to Ovacome newletters. The surgeon who does radical surgery is interviewed in the Autumn 2017 issue about this.. ovacome.org.uk/news/ovacome...