Struggling to decide on treatment

Hi,

I’ve just returned from my EUA and feel stuck between a rock and a hard place.

They can’t be certain that there is no parametrial involvement after, CT scan, MRI scan, 2 normal examinations, PET scan and now EUA.

It sounds as if the scans are implying there is involvement which couldn’t be seen on visual examination and now on EUA they can’t be certain that there isn’t. One side definitely no involvement, other side they can’t see but possibly feel something that could or couldn’t be.

My consultant says this is very rare they can’t decide between 1b and 2b. So it’s been left to me to decide wether I want laparascopic radical hysterectomy or chemo radiation.

Obviously if it does turn out to be 1b a hysterectomy would be amazing, low risk of LT side effects, I keep my ovaries so no menopause (I’m 30) and it’s keyhole so short recovery time and I can crack on with my life. But if it is 2b and there’s some traces of cancer left I’m terrified of recurrence. And then because of the hysterectomy the positioning of my bladder and bowel would be different if i had to have radiation leading to an even higher risk of long term effects.

But then do I go with the chemo radiation straight away and zap everything out of me and just risk all of the LT side effects.

I know I’m being quite vain and I should just be happy that this is a treatable cancer but it just makes me so sad to think my quality of life could really be effected for such a big chunk of my life if I makeep the wrong decision.

My consultant seems to be a leading surgeon in this field and he thinks I should try everything to avoid radiation and the side effects initially and go ahead with the hysterectomy.

Has anyone been in this position?? How on earth do you choose?

Sorry for the long post and thanks in advance. Any advice will be greatly received. Xx

Hi princess

only you can make this choice.... however, I would be asking these questions. 

1. Do you have lvsi? If so what is your dr's opinion on that as a factor. There is much debate if lvsi is present than the treatment should be straight to chemorad as the recurrence rate is high in hysterectomy patients that have lvsi. They should be able to detirmine this through the lletz biopsy. 

2. Is it possible for them to start the surgury (open you up) and detirmine for sure and stop if parametria involvement is indeed there

3. Will they remove lymphnodes during surgury and how many and compare the rates of developing lymphodema  after both surgury and chemorad. 

Now, I will give you my opinion and it's just my opinion but you asked....

i would go straight to chemo rad because if they can't decide for sure then better to err on the side of caution and risk the side effects of radiation while being still intact and have your bladder and bowels more protected with the uterus and cervix still there. The newer radiation machines are more safer then you might realize. My oncology team actually feel that even stage 1b patients regardless of lymphnode involvement should go straight to chemorad to ensure they get all the cancer the first round. Even dr's have different opinions. 

I would also ask  because of your age to have your ovaries moved out of the radiation field so that you will not go through menopause so early. 

Whatever you decide trust in yourself and neverlook back. 

Good luck. 

Hi

me personally would also go straight for the chemo radiation , I was diagnosed 1b1 Adenocarcinoma had a radical hystectomy , ovary's left however 18 months later recurrence to the ovary then went on to have the chemo radiation. 

Recurrence to the ovary is rare however it happened to me , my gynaecologist refered me to an oncologist after my initial diagnosis the first time however I was told " I didnt meet the criteria for chemo / radiotherapy at that time. I always wonder if the cancer would of come back if I'd had the treatment the first time.  But that's impossible to know just a thought that I think every now and then.  

Also if you have the hysterectomy is there a possibility after the op they may recommend you go on to have the chemo & radiotherapy anyway ? I know some people go on to have this just  for belt and braces . 

Its a real tough one for you but  follow your gut instinct ,& don't be afraid to ask them questions. 

I wish you wish you well whatever you decide 

Greeni 

xx 

Thanks guys, its really helping to get a mixture of opinions and hearing from people that have gone through this. 

I already had 10 questions on my list Surprised but you've raised some really good points that I hadn't thought of Lolli - so thank you. I'm now up to 14. Which I've emailed across to my CNS who is going to try arrange a clinic appointment to discuss.

Greeni - She also mentioned sometimes they do radiotherapy after hysterectomy as a catch all and I just thought how bonkers?! I'd be devastated if that happened!! Why wouldn't they just do that first?? I suppose they must have their reasons so that question will be number 15. Poor doctor is never going to get me out of his office!!