Advice on diaphragm surgery

[NIKKibailie]

Hi all

Just wanted to say how much I appreciate everyone’s advice and support when I look through. I don’t post often but it does really help and I feel I should be more responsive to questions other people out out but i try hard to stay off the internet as i can go down a rabbit hole. I’m stage 3c clear cell and just had my scan to see where I’m at at the end of chemo. Last scan after 4 showed 1cm so now I’m hoping for nothing. Im under UCLH prof ledderman who has said that if I have some left then they are likely to operate as that’s the best thing for clear cell. I’m just wondering if anyone has had secondary surgery to remove something from the diaphragm ( lesion on right hemi diaphragm liver node) I know it’s major surgery but no decisions been made either way as my scan results come out next Tuesday. Just wanting any other experiences?

Many thanks x

[Lindaura]

Dear Nikki,

So sorry you are facing this situation, but thankfully, your lesion is very small now.

Nevertheless, you are facing a difficult operation and it is truly wondrous that you have a Surgeon capable and willing to carry it out.

I believe this is probably the way to go, so prepare yourself.

Seems like such a bother for such a little thing, until we remember that is is composed of thousands of nasty cancer cells.

So, once again, I am so sorry you have to deal with this, but thank goodness you were able to get such a good team.

Hugs,

Laura

[NIKKibailie in reply to Lindaura]

Thanks! Yes I know but if it’s not gone you’re right I want it out! Will keep you posted x

[jenny8c]

I had part of my diaphragm removed as part of my debulking op. Was a bit apprehensive as I thought I need my diaphragm to breathe!!! However I would not know any difference. If your prof recommends the op, I would go with with it. I had two big operations - the first to free a blocked bowel and then my debulking. No one looks forward to major operations but if they are life saving is there any choice? You will get through this and our thoughts are with you.

Jenny xx

[NIKKibailie in reply to jenny8c]

Thanks Jenny! We will see what happens x

[tutti]

I had half my diaphragm removed in 2011 when my cancer returned for fifth time.It was all a bit of a surprise as the scan had only shown a small lesion on my liver.They mended it with mesh and I was told that I would take six months to recover but three months later felt okay.Apparently you learn to breathe again with what’s left and the liver also regenerates.Main problem post surgery was indigestion and tightness in chest but it soon sorted itself out when I stopped the omprezole which was prescribed for acid!

Good luck Vivxx

[NIKKibailie in reply to tutti]

Thanks so much. Yes it does seem pretty involved! Will wait to see what scan says and then have a better idea. I’m hoping if it’s less than 1cm they won’t need to take too much away. Wishing you well.

[Bevcav]

Hi I am also 3c clear cell but have never been of Offered surgery I wish they would but maybe my tumour has never been a size they could good look 🙏

[NIKKibailie in reply to Bevcav]

It’s not absolutely definite that they will. They’ve just said it’s a possibility. Will keep you posted. Is yours the same place? Where are you in your treatment? X

[Bevcav in reply to NIKKibailie]

I am at the Tom Baker in Calgary

[ellseybellsey]

Nikki I have just finished treatment for a reoccurrence, I had a 2.5 cm lesion in the vaginal vault and a spray of cancer cells under the Hemi diaphragm.

I had surgery for the vaginal vault but Mr Taylor my surgeon said I couldn’t have surgery for the diaphragm so relied on chemo. I happy to say my scan at the end of treatment was clear.

Ellsey xx

[Neona]

I have stage 3c clear cell and am on clinical trial at UCLH. I had successful surgery but recurred during frontline chemo. I was told there was no point in second surgery as my furst surgery was very successful but the cancer grew back straight away- so interested that you have been offered surgery. What chemo had worked for you?

[NIKKibailie in reply to Neona]

Hey I’m also at UCLH and hopefully doing Athena with kristaleit and lederman so like you. They are not def doing surgery but may do it. Keep you posted

[Neona in reply to NIKKibailie]

Am thete Monday 18 to Wed 20 May next. Not sure after that as having problems on trial atthe moment.Let me know if you ate there!

[Neona in reply to Neona]

Meant March not May

[NIKKibailie]

Hey neona. I’m there this Tuesday for my scan results but I’ll let you know if I’m there next week. Sending best wishes x