Really Need Advice Please!

Cervical cancer treatment
1

Hello Ladies,

I was just wondering if anybody on here had been in the same situation and what they decided to do...?

I was diagnosed stage 1 in October and had a radical hysterectomy in November. At my follow up in December the consultant said all went well, they removed 18 lymph nodes which were all clear however they did find LVSI, which is bad cells found in the tubes that lead to the lymph nodes. I have been given the choice whether I want radiotherapy or not. And this is the difficult decision!

i went to see the radiologist for advice, he said they are 90% sure they caught it all, it’s just the LVSI that gives the 10% doubt. He said if there were a room of 10 doctors in my situation, 5 would probably opt for it and 5 wouldn’t...so I just don’t know what to do! 

Having radiotherapy doesn’t scare me, if it has to be done then I know I can do it! And I can handle all the side effects he talked about. What does scare me is if it does come back then they can’t do radiotherapy again so what next??? Is that it??? Can I not be cured???

Whereas if I didn’t have the radiotherapy, just 3 month check ups and it came back then I would have more of a chance of cure with radiotherapy still being an option.

At the moment I have opted to have it as I thought I need to give myself the best chance, but some days I change my mind and think well what next if I have it and it comes back?! 

What I really want, as I’m sure we all do...is a crystal ball to see into the future to know what to do!!! 

I always see myself as having bad luck and people I know say you create your own luck so maybe I need to start being more assured that’s it’s gone! And in the grand scheme of things I am very lucky. I’ve just convinced myself that this isn’t the end of it and it will come back...does anybody else think that way?! 

I am only 32, I lost my dad less than a year ago to cancer so I’m just sick of hearing the horrible word!!! Am angry that it’s taken two members of my family at a young age and now it’s challenging me! I need to get rid of it for good and just don’t know what my best option is...but who knows?!

Any advice would be gratefully received, thank you xx

2

Hi there 

well back in 2013 i was diagnosed with 1b1 Adenocarcinoma cervical cancer , I had a radical hysterectomy.  My gynea consultant referred me to oncology for further treatment chemo and radiotherapy however when I saw the oncologist he initially gave me a choice its up to you he said , he gave me 2 weeks to decide to have the treatment or not have the treatment , it was an awful time so many questions to ask to help decide , it was awful to be put in that situation I just wanted someone to tell me what to do have the treatment or not have the treatment anyway i eventually thought yes have the treatment so went back to him 2 week later with my answer of yes and he turned around and said to me that he'd spoken to other consultants and they decided I actually didn't meet " the criteria " for further treatment as I only had 1 out of 3 poor prognostic features .  So all that stress in trying to decide and that's eventually what I was told ,  now the next part of my story is that 18 months later my cancer returned , I did then need to have the chemo and radiotherapy BUT I always wonder if I'd had that treatment the first time round would it of come back ? Nobody knows.  It's a really tough decision and position your in and only you can decide,  personally I'd have the treatment but you have to do what feels right for you , and always look back and know you made the best decision for you at that time.

best wishes 

Greeni xx 

3

Hello,

Thank you for your reply, I really appreciate it. 

Looks like you were in the same position I am now. That’s awful that the consultant messed you about like that. This is a stressful enough time without them adding the worry. I’m so sorry to hear that you’ve had a reoccurance, how are you now?

My instinct is telling me to have the radiotherapy, it’s just the worry of reoccurrence and lack of treatment available thereafter. 

It‘s so hard being given the choice yourself rather than them telling me what I need to do. They have much more medical experience/knowledge but I guess nobody knows what the future holds.

Wishing you well xx

4

Hi sponge 

well so far so good (dare I say )although this morning I've just been sent for a chest X-ray probably Just a chest infection but other than that I'm ok 2 years after recurrence. 

 i actually really struggled that they put the decision if to have the treatment or not in my hands They are the experts ......So tough and like you I did think about my options should I have recurrence and treatment options but my initial instincts were to have  the treatment , however the decision was taken away from me in the end and I've since had the recurrence and went on to have the treatment ,I have been told now that should I Have a 3rd recurrence depending on the site any future recurrence a pelvic exteneration may be an option other than that palliative treatment.  

I wish you well in your decision , 

take care Greeni xx 

 

5

Hello,

Yes I guess we all have the same questions rolling around in our heads and driving us mad!

On top of my decision I have my fertility to think about as I have no children yet. So before the radiotherapy can start I’m going through IVF which is also stressful!! 

Have you had the results of your chest x-ray yet? Hope everything is ok 

xx

6

Hello,

I was diagnosed in October with cervical cancer and was told I needed a radical hysterectomy. The surgery took place couple of weeks later in November.

The recovery process went well as can be really and when I went for the follow up appointment with my consultant begining of December, I just kept thinking please say it’s all gone so I can just get back to normal! I was told they had got good margins around the tumor and that my lymph nodes were clear too but they actually told me because of the size and the aggressive nature of the cancer I was to consider radiotherapy.

I had just made the “cut”, if you will, for this to be considered. Any thing over 3.9mm, is when they offer it and I was measured at 4.1mm. They then gave me the option for fertility treatment as being 30, having no kids and just getting married last year, this was a big thing for me! I needed to get those embryos frozen, because if I went ahead with radiotherapy it would fry my eggs straight away, so they gave me time to go have  IVF throughout Xmas and new year, pretty intense! Successfulily we’ve frozen 3 embryos! 

Over this period they let me think long and hard about whether or not I wanted it, as like you, they couldn’t tell me the liklihood of it coming back. Such a big decisoon! Throughout it all I’ve had pepole telling me what to do and things arranged for me, but now it’s down to me!! 

I chose to go for it and radiotherapy starts this Friday. 5 weeks/ 5 days a week! It was my gut instinct and they always say go with your gut dont they?! I just don’t think I could go on not knowing I haven’t tried everything to get rid. In the grand scheme of things, this is 5 weeks of my life to just know I’ve tried everything.

Go with your gut! That is the right decision for you!

Good luck Hun! Xx

7

Hi Louise,

Thank you for your reply! 

We are so similar, I was diagnosed in October, hysterectomy in November and given the choice in December! Mine was also about the same size as yours! 

Congratulations on freezing those embryos, you must be thrilled! 

I’m a bit disappointed at the mo as started IVF injections on Monday, had one scan on Friday and they later phoned and told me to stop the injections as they could only see one folicle :-( I was so taken aback I didn’t ask any questions or heard from them since! So called them today and have an appointment Wednesday and hopefully I can start them again...not really sure how it works?!

Just worried that all this is delaying my radiotherapy and going to cause me problems...the consultant said as long as we start before Easter it will be ok, but now I’ve decided yes I just wanna get on with it! But really really want me and my partner to have our own children.

Been such a rollercoater ride I just wish I could fast forward a year and everything be ok!! 

Thanks again for your reply and good luck with your treatment, think mine is going to be the same :-) xx

8

Hey sponge,

 

To be honest that did happen to me, I wasn’t producing any follicles in my left ovary, plus every time they scanned me they couldn’t bloody find the dam thing!! I had to have painful internal scans then external....I had fluid in me after the surgery which was making it hard to find. They then sent me back to hospital for it drainin. After that they found it again, but still wasn’t producing. So the consultant upped my dosage from 300 units to 400 units.

It worked! I managed to get 2 eggs on collection day from that ovary. So maybe ask them why they can’t just increase your dose??

I don’t know if it works like that for everyon, but worth a try?!

Let me know how you get on love x

9

Hey Louise,

We are so similar...they also could not find my left ovary!! I had a really good sonographer for my initial scan before treatment and after a bit of jiggling around on my stomach she found it...however on my first scan after injections had started the woman wasn’t so good, she didn’t really seem interested, I don’t even know her name coz she didn’t introduce herself, she hadn’t read my notes before I saw her so didn’t know my situation until I explained everything, she couldn’t find my ovary so called somebody else in, they started talking to each other in their own language so I had no idea what they were saying! He couldn’t find it either so they had to call somebody else in...he found it and said ‘nothing’. I got sent home and within 2 hours she called to say stop the injections and we will see you in clinic this week. I heard nothing so made an appointment myself! Have no idea whats going on now and getting worried! So stressful!! 

Me and my partner have such such a bad experience at this hospital we‘ve been referred to...sent to wrong places, rude receptionit’s, nobody knew my history, my first appointment wasn’t even in the system! 

Just can’t wait for it all to be over!! 

xx

10

Hey,

We are very simliar arnt we, nice to talk to someone who’s experiencing the same things! 

sounds like you haven’t had the best/smoothest journey love! It’s so hard as it is with out all this messing about. I just want it to all end and go back to normal too!

All I would say is keep on with getting your appointments down, even if you feel like your pestering, your not! It’s your body and life .... you deserve answers and things to go ahead as planned.

stay positive hun!! That’s all we have! Keep going xxx

11

Hi Louise,

Just checking in and seeing how your treatment is going? 

I had another go at IVF woo! Turns out they told me to do the injections the wrong way round which is why it didn’t work!! We now have two frozen embryos :-)

Just waiting for a CT scan appointment now to do radiotherapy measurements and get the ball rolling!

Hope you’re coping ok and having minimal side effects 

xxx