please bear with me as my head is thumping today but i need to process all this new information and need you lovly ladies views and experience.
Cutting a long story short my cin 3 lletzz was unsuccessful and i was due to have total hyst on 26 nov at local hosp hasnow been restaged 1a1 after hitsology audit (!) and have now been referred to specialist oncology centre.
Great me thinks after long discussions with original gyna she assurred me onc centre was best for me to get radical hyst probs by keyhole.
After appt today i am told by these experts either hysterectomy is' over treatment' and all i need is another lletz so he can get clear margins???
He has booked me in for Monday :(
Orignal doc has had 2 go's at lletz and said it was too far up and difficult to get at which is why i was referred for hysterectomy in the first place!!
Am i making sense?? Confused??
Thanks for any info or experience that may help me understand
No wonder you are confused sounds like the drs are as well!! At least now you are under expert care. What would be your preference? Would you want the hystorectomy (I know no one would want it as such, hopefully you know what I mean!) did they allocate you a nurse specialist? If they did I would say that should be your first port of call, get a list of q’s made up. My stage 1b1 CC was treated with two LLETZ first by a gynocologyst the second by a gyno oncologist along with pelvic lymph node removal under general anathstetic. It is possible your new consultant feels they could achieve clear margins with another LLETZ. I would push to have your questions answered x
It is reassuring to know you have had success on this path. I think my confusion is because 2 doctors were completely different in there opinions of treatment and i had got my head round the hysterectomy from the first gynae(like you say no one wants it!) so it felt like the second gynae was taking my chance of cure and peace of mind away! Sound silly now but thats how it felt at the time:(
Inow see he wants 2nd biopsy from lletz on Monday and possibly clear margins (but i have been told several times it is in an awkward area!) to decide whether a total hysterectomy will do the cure/peace of mind or is a radical necessary.
I have to say my head was in a bit of state and the staff were really patient with me and i am sure it will eventually be fine :)
My worry if i get clear margins and no further treatment is the HPV virus which caused the cells to change in the first place coulld just happen again. How often do you get checked? Do you return to specialist centre for these checks?
Unfortunately I think the mistakes made with my histology has not given me confidence in my local hospital.
I think its good that these dedications ultimately lie with the MDT meeting so you have all sorts of professionals looking at the facts and making a decision. With HPV it never leaves you once you’ve got it. I think of it a bit like cold soars it tends to come back when your immune system is low or your a bit run down. Quite a few ladies have done research into nutrition that boosts your immune system and is thought to keep your immune system high. I was told by a nutricianist (I’m a terrible speller!!) I should take zinc and green tea. I did but don’t at the moment as I’m pregnant.
Unfortunately the worry of a reoccurrence never really leaves you but think that would be the same no matter what level of treatment you got. I was on three monthly checks but due to the pregnancy I won’t be seen again until two months after the baby is born which will leave me untested for a year which makes me nervous. At the three monthly checks one appointment I get a smear the next I get an examination so I only ever get a smear every other check up. Through my own research which has been confirmed on the “ask the expert” iv found that adenocarcenoma is easily missed by smear so I am now going to ask for colposcopy at my check ups. Are they going to give you am MRI? Any questions at all please don’t hesitate to message me x
Meant to say I did go to a specialist cancer centre for my check ups but was then transfered to another hospital where they had coloscopy equipment incase they wanted another look. I was under the consultant who done my surgery but he left so I now see another oncolgyst x
toca how wonderful you are now pregnant x It must have been even worse for you not already having your family and i hope you are taking it easy xx
I am blessed with 2 lovely kids who hate still being called kids lol(22 &25) My choices seem rather flippant when people are less fortunate than us but all our decisions have to be right for ourselves.
I am not sure i want the worry of constant checks and hospitals to see if it has returned. I feel if i have a choice after biopsy i would choose surgery to reduce the risk of recurrance. Gynae onc has said he will do simple hyst if he gets clear margin for my peace of mind but he doesn't want to jump into radical without definite need. Trust me to get the gynae whos papers are all about reducing invasive surgery!!
Iam worried about Mondays lletz but just want the ball rolling again. Its nearly 12 weeks since this all started for me and i want my life back as normal as it will be.
Thankyou for the info on check ups glad to hear i will stay under specialist care.
toca how wonderful you are now pregnant x It must have been even worse for you not already having your family and i hope you are taking it easy xx
I am blessed with 2 lovely kids who hate still being called kids lol(22 &25) My choices seem rather flippant when people are less fortunate than us but all our decisions have to be right for ourselves.
I am not sure i want the worry of constant checks and hospitals to see if it has returned. I feel if i have a choice after biopsy i would choose surgery to reduce the risk of recurrance. Gynae onc has said he will do simple hyst if he gets clear margin for my peace of mind but he doesn't want to jump into radical without definite need. Trust me to get the gynae whos papers are all about reducing invasive surgery!!
My MRI was normal so hopefully no lymph nodes involved.
Iam worried about Mondays lletz but just want the ball rolling again. Its nearly 12 weeks since this all started for me and i want my life back as normal as it will be.
Thankyou for the info on check ups glad to hear i will stay under specialist care.
