Stage 2, hysterectomy or radio and chemo, I want both

Hi all, I had my first consultant appointm yesterday and stage 2 was confirmed. I am now waiting for an investigation under general to assess what the spread is and if the surgeon can perform the op, if he can't it will be chemotherapy, radiotherapy and brachytherapy. Thing is, I want the lot, if he can't operate now then what about when...if the treatment ends and hopefully I am in remissio, has anyone have the experience? I requested a hysterectomy about 5 years ago, I have hiv virus and was pretty certain that at some point we would arrive where we are today. I feel very strongly about wanting the op if not now then in the futur. Any experience would be appreciated

 

Deb xxxx

Be careful what you wish for. 

My understanding is that you can have chemo/radio after a hyster but not the other way round. Radio does some serious damage to your insides as well as the tumour and surgically removing your cervix and uterus after is incredibly tricky. 

I was in the same position as you being given the options of chemo radiation or surgery dependant on results. Surgery certainly seems to have less side effects. 

Hi

I was diagnosed stage 2b last year.  Because the tumor was just over 4 cm had chemo, radio and then brachytherapy.  I also decided that I wanted a hysterectomy.  

3 months after my treatment finished I had an MRI which showed abnormalities, a PET scan later still inconclusive. Two options wait three months or a hysterectomy.

No hesitation hysterectomy.

Treatment will depend on the size.

Thanks for your replies ladies, 365 I read your blog, it was really helpful, you have been through the mill big time, hopefully your mending well now.

 

Auto spell is a nightmare.....I have HPV not hiv. what I should have said is that if the cancer has spread then they won't do the surgery, which is what I want, as apposed to radio and chemo, but if I have to have chemo and radio then so be it but I don't want the cervix and co. left behind, this is where the cancer started, what's to say its not going to start again? and if it's more difficult to take it all away after treatment then I might be stuck with something that's already tried to kill me

 

Sent from my iPhone

With stage 2 it's alwsys s bit of s toss up between surgery and chemo/radiation. I think for most 2b it's radio and chemo as it had spread sideways not downwards as in 2a. 

I can understand your want to have a hyster too ( a friend was 2b and she had radio/chemo and she wants it out) however it is not always easy or indeed possingle due to the damage he radio does. But as the lady above says it is possible. 

One tjing to remember is though that hysterectomy is not a guarantee it won't come back. It wI'll just come back somewhere nearby. Even with other stage 2 ladies sting what treatment they had, the descision made for your case will be unique to you, dependant on lots of factors which your upcoming results and tests will determine. You'll have loads more answers soon. 

Hi :-)

I was stage 2b, had a hysterectomy first, followed by chemo-rads and brachy. No sign of recurrence after 4 years. However, had I known then what I know now I would have been happy just to have the chemo-rads and brachy and not have to undergo massively invasive surgery. For the record, it seems to be standard practice in UK to settle for chemo-rads and brachy in 2b cases because there is a higher chance that it has begun to spread and chemo-rads treat the whole body. Waiting to recover from a hysterectomy before you can begin the chemo-rads therapies only delays matters. In UK you have multi-disciplinary teams who discuss these things with one another. My case differs because I am not in UK and my cancer was discovered by a gynaecological surgeon, who, naturally, wanted to use his knives. He was well pissed off when my chemo treatment didn't come under his chemo pal in the same hospital, because that hospital does not have an external beam radiation therapy linear accelerator.

My mum has 2b... It says on her hospital letter no spread to other sites which is good news... Her immediate reaction when she was told was "just take it out" but the consultant said no because of possible spread when they disturb it. She's having 28 rad, 5 four hour chemo and brachy towards the end.....

i've been ok all week, now i'm having a wobble again, perhaps i'm tired....

This is stupid, but im worrying that she's got no diarrhoea, no sickness (slight nausea) but nothing else... just tiredness.....what if its not working?? She has no rashes or anything... just lower sbdo pain....

 

tell me to shut up mithering.... im getting on my own nerves now!

Hi Shavorne,

Is this your mum's first week of treatment? To the best of my recollection I didn't have anything but tiredness until about week 3, when I began to get a little diarrhoea. Try not to worry that it isn't working, it's very rare that it doesn't.

Keep smiling for her :-)

(((((HUGS)))))

Lots of love
Tivoli
xxxxx

Hi, I have advanced CC and I wasn't given the option of an operation due to the grade and size of the cancer so instead I have had chemo (which is a lot more intense than what you will/would have due to my grade), 28 radiotherapy sessions and I am 1 session into 3 sessions of bracatherpy. I have been so poorly throughout all of the treatment from throwing up, not being able to eat, loosing so much weight I am now a size 6 and skin and bones, I suffer daily with internal pain and pain every single time I go for a wee I cry it's that bad (I doht cry in pain btw) but today the internal pain has been so bad that morphine hasn't helped and I've got to go into hospital to get the pain under control as I can not walk because the pain is so intense.

The hospital will decide what treatment is best for you they maybe able to operate and this may get rid of it all or they may decide to go with chemo and radiotherapy - you must trust your doctors as they know how best to deal with it. Having treatment for the sake of it - they won't allow - and I also wouldn't recommend at all as you need all your strength to beat this! As I have said I have advanced cancer and my last scan has shown that the cancer has gone from being huge to the size of a pea! So if I can do it so can you.

You will always have the thought what if it comes back I think about it often but this side tracks me as I have had a positive outlook on all of this as I've had to really! And having that outlook I feel has helped me emensley 

I hope you get treatment good news that it hasn't spread xx

Hi Tivoli, yeah its her first week last week, she's on her second now.... She's had one dose of chemo last friday.....

you read so many bad experiences im just starting to worry that my mum seems virtually fine in comparison so i worried if its working or not......

im just being stupid....

Not stupid Shavorne, just not quite patient enough. The treatment lasts five weeks for a reason, and just because she is one fifth of the way through her treatment as far as duration is concerned, she is not one fifth of the way through it's effects. Watch and wait.

Be lucky :-)
Tivoli

Chemo and radiotherapy last for 6 months in the system after they have finished I have been told so it's still working even after the treatment has ended....It does take a while for it to be effective - they usually give a scam about the 3rd 4th treatment to see how it's working that's what they did with me 

Thank you all for your thoughts and experiences, it is a great comfort and help. Tomorrow I will be having the exam under general anaesthetic followe by a ct scan for the radiolog, although they haven't decided I have been booked in already for chemo and radio so that no time is lost waiting on tomorrow's results. I had the pet scan Monday gone so tomorrow is the final piece in the picture. 

What I have found to be the greatest difficulty up until now is the extreme fatigue it's more than I was expecting and I know that it's probably going to get worse. You are all inspirational and Carmel 121 continued good luck, a positive outlook really is so important xxxx

 

Sorry to tell you but the tiredness only gets worse well in my experience it has its horrible BUT it does get better! U found that once I finishes my chemo I started to feel like me the radiotherapy does make you tired but not as tired as the chemo thank goodness!

I've finished my treatment now (Thursday yay!!) And I have days where I am sleeping all day then days where I am jumping around so just bare with it...taking iron can help as you maybe run down with your blood count I always was and iron helped me with tiredness but then caused constipation which was not nice.

Thank you and good luck on your journey xx

I've found having a thick cat to laugh at has helped me through all this too lol xx