appendix removal for BOTs

[Sabby81]

has anyone else had a complete radical hysterectomy after a 20cm MBOT and no mention of removal of appendix? It just occurred to me when doing some research that most people mention removal of appendix when they remove the cyst, my cyst was removed in 2019 and now I have had radical hysterectomy but still no mention of removing appendix? Thanks

[Mammi]

Hi Sabby 81 I had same as you in 2019 & appendix not removed. Just presumed because my tumour was all on the left side with no spread that it wasn’t necessary 🤷‍♀️Maybe I should have asked 😄Always difficult to know what questions to ask isn’t it when usually in a state of shock but I certainly trust the surgeons decision. Hoping you are well now . Hugs Dee x

[Sabby81 in reply to Mammi]

I thought it back in 2019 when ovary and tumour was removed and still forgot to ask this time after full hysterectomy, mine was on the right too 😅 ill ask for both of us at my follow up apt ! Did they do washings and biopsy of omentum on yours? They didnt fitst time around for me as i went private and they thought totally benign but they did this time just waiting results now worst part isnt it X

[Saintgermain in reply to Sabby81]

Hello,I had my debulking hysterectomy in April 2021 it wasn’t mentioned until afterwards that the surgeon also removed my appendix.

[Sabby81 in reply to Saintgermain]

Oh wow thanks Saintgermain perhaps they took mine after all too then x

[Mammi in reply to Sabby81]

Yes they did & all thankfully were clear my tumour did however leak in surgery so to be safe I had chemo & 🤞all good!X

[Sabby81 in reply to Mammi]

That's great, such a relief for you, thanks!

[Chocky16]

Hi had same as you and they did remove appendix at same time think more a precoutionary procedure. Good luck for future

[meaty]

in my surgery notes he stated the fact I had previously had an apendesectomy. so I took it they do remove it . . I am sure if you ring up they can tell you . x

[Mund2121]

I had a very large MBOT removed in December 2019, radical hysterectomy etc , my appendix was checked but not removed. Spoke to my gynaecologist about this following surgery and current thoughts are to leave it in. However, in hindsight I wish it had been taken out. I have been advised against having another surgery just to remove it unless it starts to cause problems.

[Sabby81]

Thanks, I guess if its been checked and defo wasn't the start of the tumour then that's good and no point in removing, my worry is (well one of my worries lol) ive read that with mucinous types they don't normally originate in the ovary so where did it originate if its appendix obvs i hope they atleast checked it! Lol I tried calling but of course can't get through to anyone, I'm just gonna right some questions down for when I have my follow up so I don't forget anything, thanks everyone you have been so helpful ☺️ x

[Tillymint61 in reply to Sabby81]

My mucous type is primary peritoneal stage 4. Omentum ( which I and many I told had never heard if! ) was the main one on initial scan that showed disease which bizarrely I was pleased about because after an initial colononspic ct scan I was told that there was something showing on my pancreas!( Having lost a former work colleague very quickly 3 months earlier to pancreatic cancer) the bowel consultant wanted a further abdominal scan and to pass me onto his colleague who specialised in the pancreas. However I asked bowel consultant 'can it be anything other than cancer ' to which he replied 'unlikely ' to which I suppose he was right but the location was wrong which meant prognosis would be very different. The 11 days waiting between the bowel guy and the pancreatic guy looking at everything in detail were without a doubt the most gut wrenching worry of all of the past 3 years. It didn't help that at the time a national TV advertising campaign for detecting pancreatic cancer early was running with lots of statistics covered in it which totally compounded my fears. It's not been a bed of roses the treatment path for high grade stage 4C Primary Peritoneal. Incurable for me from the off. (I asked that direct question too at the start) but it has been treatable and carries on to be and who knows what might come in the near future with new treatments being trialled constantly. I am currently in hospital trying to get a partially blocked bowel under control in order to start 3rd reoccurrence chemo asap🤞🤞sorry for such a long reply but I am wide awake (probably the steroids!) and it's been good looking back at those eleven days to prove how not all is always as it seems and it allows me

to stay positive for when waiting for results because there is always a chance however small it may not be as bad as you think.. Incidentally have brought up with bowel guy since, wether it was right to tell me what he did at the time which with hindsight another scan and the eye of pancreatic specialist proved to be flawed and asked would he do the same again he said yes as he is bound by a protocol that says he has to !! Guess it's to do with potential law suits in cases where it go3s the other way and an extra 12 days to clarify would be the issue for some on else. Thank you for reading this saga and wishing you well and sending positivity in buckets for your results. Keep busy ,every second spent thinking about something else is a second well spent in my book. Xxx

[Sabby81 in reply to Tillymint61]

Bless u, I am so sorry to hear what you are going through 😔 I asked the gaeny Dr if she took all of the omentum (i like u didnt even know what it was for!) lol she said they can't take it all but they took part for the biopsy, I had conservative treatment 3 yrs ago although I asked for full hysterectomy the private consultant denied it me, I am extremely grateful for that now though whatever the outcome as I have a beautiful 2 yr old daughter to be thankful for 🙂 I just want to make sure I'm around long enuf to take care of her now!

I would so rather them be honest with me, the Dr i saw friday was fab she basically said they have no clear tumour markers the ca125 didn't work for me so no idea of knowing if/when it would come back and chemo doesnt work for this type either which i had read about but still hoped i was (googling too much) as people always tell me! Lol, during research I found that the Royal Marsden in London is mentioned loads as they specialise in Mucinous types, they're learning more everyday,I hope the chemo goes well for you, take care and stay strong easier said than done i know! Im on day 5 now so half way til i get results hopefully! 🙂 x

[Sabby81]

Finally got through to the consultants secretary and my appendix wasn't checked or removed 🤷‍♀️

[Tillymint61]

Pre op I think it was pretty much the only organ NOTto be mentioned in the 'we might have to remove your.....' conversation with surgeon!! Maybe if it showed signs of disease they do remove or if looked dodgy on scans they'd mention possibility they'd need to remove. Otherwise I suppose its one less area to recover internally what with potential scar tissue and potential adhesions one less thing removed is great.🤔

[paulamma1]

Hi Sabby81, I had surgery a year ago. Radical abdominal hysterectomy. Took omentum, appendix, 2 lymph nodes, stripped the peritoneum (sp?), ran the bowel and generally had a good look around 🤣. Surgeon told me if needed he’d take some of the bowl if necessary. I told him to knock himself out! just get it out of me.

This is my first time on any kind of ovarian cancer forum and it’s so great to read about people going through the same or very similar experience.

[Sabby81 in reply to paulamma1]

I joined when they found the massive cyst back in Dec 18, it was a god send! I find it difficult to speak to family and friends as they just don't understand and tell me to stop worrying so it is refreshing to speak to people going through the exact same or similar situations x