Hi ladies,
So after having my lymphnodes removed laprascopically back in May, they found a tumour between my bladder and bowel. On Wednesday im scheduled for a radical hysterectomy…because the tumour is so close to my uretha a urologist is also in on the surgery hoping to re-site it in the hopes they can save my bladder and not have to remove it. I have everything crossed. My oncologist told me to prepare incase i wake up and they have had to remove my bowel and bladder…or i may just wake up with my bladder taken…or if im lucky i might het to keep them both. No matter what the outcome i feel pleased im at least getting the chance of them saving my bladder and i know they will try there best but i just want this cancer out of my body and having to have stomas is a small price to pay for my life. Its going to be difficult…judt wondered if anyone has had similar surgery or any advice?
Thanks for reading
Keep fighting ladies
Leeanne x
Dear Leanne
I was told on Friday I've got to have this. I will definitely lose my bowel and probably my bladder too. Part of me is so relieved surgery can be done (they weren't optimistic but now are) but another part of me is shocked and devastated. Although I know it's good news really and if all goes well could finally be the end of the nightmare. I hope your surgery goes well; I'll be thinking about you and sending hugs and positive thoughts through the airwaves.
Take care
Jillx
Leeanne and Jill,
I am so desperately sorry to read your posts. But you both seem to be bright and hopeful and that's great. I just wanted to send you both hugs and very best wishes for your forthcoming surgery.
(((((HUGS)))))
Be Lucky :-)
Tivoli
Thank you Tivoli for your kind words. I am trying to be hopeful. I even bought a new car yesterday! And I've got 2 weeks in Cornwall before the operation to look forward to with my lovely 14 year old boy! Jillx
Hi, I have had to have a bag for my bladder for a couple of weeks and I have a tube from my kidney which was used to drain it as my stents were blocked so I kind of know what its like. If your bladder and bowel are removed you'll have a diffrent type of bag but they do the same thing.
i found having my bag wasnt as bad as I thought it was going to be it was really easy to handle and change, it was also quiet good to have as I didn't have to go the loo as much (my bladder decides I 'need to go' when I begin to do something). The only annoying thing for me was when I woke in the morning the bag was so full I had to empty it right away - I never had an accident - and when I went out I had to 'hide' it under my clothes - I wasn't bothered by it but other people are....I was given a belt to wear around my waste so it didn't hang as like I said I have a tube coming out my back and this held it in place but once i had it 'hidden' you couldn't tell. I might still end up with a permenant bag because I have a hole in my bladder....
Good luck xx
Hi Leeanne & Jill
Sorry to hear you are both facing further surgery. I had a total pelvic exenteration nearly 10 years ago, I have both a colostomy and urostomy. It is a very big operation and takes a bit of getting used to but with a few adaptions you can live a normal life, I am just grateful I could have the operation to save my life and see my children grow up. If you want to ask any questions please contact me, i am happy to help as best as I can.
Good luck both with the surgery and recovery.
Love Julie xx
I was hoping that Julie saw your posts. She jumped in when Cara (CD84) was looking for advice a few weeks back when she had this operation. Cara is recuperating at home, so I hope she will see this post too.
Good luck with the operations. Fingers crossed that this is finally the end of this crap for you two so that you can get back to enjoying your lives.
love t xx
Hi Leeanne.
I'm really sorry you have to have more surgery.
Hopefully the urologist will be able to save your bladder. IT amazes me what they can do. I mean how do you even begin to resite things?!
My tumour was invading my bladder and my rectum so I ended up with two stomas. My view is that if it means you can live it's worth doing anything. I'm not saying it's easy but you will cope with whatever happens.
I had a hysterectomy last year and for both surgeries my top tip is to get rid of the wind pain as soon as you can, by trying to get moving even just a little bit and peppermint tea. Ask for the peppermint solution they do on the ward as its stronger than to tea too ;)
Love Cara xxxx
Thankyou for all your comments and advice....im here in the ward now. Surgery tomorow. Feeling positive xx
Good luck Leeanne. I hope all goes well.
Jillx
Wishing you all the very very best Leeanne. Your positive attitude will be a big bonus. Praying for the minimum amount of intervention. Every good wish to you too Jill. Stay brave xx
Wishing you all the best for your surgery Leeanne
Be lucky :-)
Tivoli
All the best Leeanne.
Love Cara xxx
Hi Leanne, I'm new to the forum and I've been to scared to write on it, but I've been following your progress and it's you that is similar to mine also trivoli and a couple of others.I have Recurrence of cervical cancer.I finished my treatment all Chemo this time and lost my hair completely. They said that they couldn't give me radiotherepy again because of the damage it caused first time.My first time was 2014 and after treatment I got the all clear from that....as you can imagine ,over the moon....Then 2016 diagnosed with reaccurance in the same place,this has hit me more than first time maybe because I'd got my head round I was all clear,anyway I finished the treatment in may and when I saw my Consultant in June she said the tumour has shrunk right down and she was really pleased,she said that she'd see me again in 4 months time and that she would leave off giving me a scan as she thought I needed a little break from them....which she got that right,I was sick of seeing the hospital.I'm 58 by the way so menopause went a few rears back.From now I have so many questions reading what most on here seem to know the next step.As far as I understand is that she will see me every so many months but if something starts to happen again I will go down the same route as the treatment I've just had.I feel on top of the world apart from a little pain on my left side which is like trapped wind but nothing ibuprofen won't take away.I also have problems with my feet it's called Periphial Neuropathy caused by one of the chemo,s I was having....taxol .I think.I struggle walking about sometimes as I need my sister to lean on when I go shopping as I feel pissed....I wish.They've said it could take upto a year before it starts to get better.Nothing has been discussed if there's anything they can do to stop this bastard decease. I struggling to understand that if it's shrunk down why carnt an operation be done????.Anyway darling I'm sorry you had to endure this but reading your story and knowing you are in hospital awaiting your operation I just want to wish you the best of luck and I will be routing for you all the way.Big hug I'm sending to you, your a very brave lady and a inspiration to so many others. Lynn
Hi Leanne
Sending you lots of positive vibes and love.
Rosie xx
Hi Lynne :-)
Welcome to the forum :-) I'm so pleased that you have decided to join us here, but awfully sorry that you have felt too timid to speak with us sooner. I am so sorry to read about everything you have gone through but thrilled to hear that you are currently feeling on top of the world. Long may that continue!
Do please hang around :-) this is the best post-cancer-party anywhere on the internet :-)
Sending you lots of love
Be lucky :-)
Tivoli
Hi Leanne,
I'm sure that you won't be reading this for a few days, but I so hope that your surgery went well yesterday and that you soon start to feel stronger. Thinking of you and sending love and hugs x
Hi
i hope all went well with your surgery too and that you recover quickly.
I was diagnosed with 1B1 CC in March 2016( although a cyst seen on smear Aug 2015 was misdiagnosed as a Nabothisn cyst) and the hospital did a serious investigation as my treatment was delayed.
I had a radical hysterectomy in March 2016 and been followed up every 3 months. A month ago during a vault smear I bled heavily and my cancer had come back bigger than before. PET scan showed tumour was attached to my bladder and lymph node also affected.
Oncologist decided that would need chemo radiotherapy and possibly brachytherapy but that should cure me. Due to the investigation and the fact my confidence in team had been knocked I sought a 2nd opinion which has now put me in utter turmoil. The 2nd opinion is that chemo radiotherapy will not cure me but have advised me to have anterior extenuation surgery - give me an ileal conduit ( they will remove my bladder) I really do not know what to do now. I'm meeting my original team tomorrow and they know about the 2nd opinion. I wonder if I should go ahead with the chemo radiotherapy and then have su down the line if needed? Any advice on this would be much appreciated.
Thank you all
big hugs
X
frankiejoely
Hi FrankieJoelyI had 6 months heavy cheno with Avastin for recurrence and am now NED. It works for some. It is really hard to make a choice. I don't envy you. Jayne
