HELP ! MDT Mtg Held & decided no to Hysterectomy! Very Scared !

Hi Girles,

I have just had my nurse on the phone after today's MDT meeting that has been held.  Initially I was told that the course of treatment would be Radical Hysterecomy as it looked like my cancer was 4cm. After my MRI it is now bigger than originally thought, so they are not going to go down that route, but to give me chemo & radiotherapy combined over a 4 week period. Then 2 weeks later 2 sessions of internal radiotherapy.

My nurse is still very positive & says they are looking to completely get rid of the cancer.

This is all very well and good, but this has made me petrified that this is the beginning of the end.  I just wanted a Hysterecomy to get rid of everything.  Now I feel like the cancer is staying in my body.  My nurse has said that it is natural to feel like this, but having the chemo/radio therapy is exactly the same as a hysterectomy, just another way of getting rid of it.

when I asked if the cancer shrinks but doesn't disappear, could I then have surgery, & she said tha isn't wht normally happens.

I feel devastated, scared, frightened.... And after feeling so very positive, this is horrendous.  I'm worried I won't see my beautiful little boy grow up & do the things that me & my husband had planned....

Has anyone els been through what I am about to?  Oh I've also got to have a PET CT scan next week.....

Thanks for reading x x 

Hi Samantha,

 

aww can totally understand how scared and confused you are right now.  I wasn't given an option either and was staged at 2B - because the cancer had spread within pelvis it meant that a hysterectomy would only partially remove the tumour so thats why chemo/rad was offered - this will give you the best chance of being clear of cancer although it maybe doesn't feel that way right now.  I am still waiting for my results and had my last brachytherapy 27/12 so its a long, emotional haul but completely do-able.  I have had all the same thoughts as you but there are so many ladies on here who have coe through this so you have to believe the same will happen for us.  If you want to know anything about treatment then do contact me as am happy to share and will be as honest as you need me to be.

In the meantime am sending you a big, squishy cuddle

 

Take care

xx

Awe thanks Hun ..... Did you have to have aPET scan ? The nurse said that my cancer hasn't spread so I'm a little confused.... You sound amazing & very positive - just want my positivity to come back, I was just so certain that I would have a hysterectomy.... X x x

......also what happens when you have Bracytherapy? Looking like I will need 2 sessions of that.

x x 

 

Samantha...have sent you a pm! xx

Hi Samantha, 

First of all I want to say how sorry I am that you find yourself in the position of 'joining' this club - it's not a club anyone wants reason to be in, but places like Jo's are great for information and support. 

I can understand you being panicked by this. So often in cancer treatment you are told that things are one way, only to be told a couple of weeks later that actually, they're something else. This is because as time goes on, they have more information about your case and sometimes change their decisions accordingly. I'm going to tell you some 'fact' stuff that might help set your mind at rest a little bit. First of all, the fact that they have changed their mind about the route of treatment does NOT mean you are closer to being terminal. I can completely understand how you would think this, but it's not the case. You have been clearly told that they are still looking at this as curable. If they weren't, they would tell you. There are very clear National Protocol Guidelines on the treatment of cancer that have been developed over years and years of research. What treatment you receive depends on what stage your cancer is - so like Andrea said, you don't get a 'choice' in that respect. That's absolutely how it should be, because we are not oncologists and not in a position to know which treatment is going to be the most effective for us. It's very important that they follow these protocols because doing so increases cancer patients' rates of survival. So, for example, it may seem odd to you that they wouldn't do an operation AND chemoradiation but actually, the reason they tend not to do that with cervical cancer is because they have found that survival rates are much higher for those who have had EITHER surgery or chemoradiation, rather than both. I promise you that they are taking this route because it is by far the best route to take in your particular case. As Andrea said, this is your best chance of being free of cancer. She's right. 

I completely understand how frightened you are, Samantha and how this news has probably made your head feel a bit scrambled, but it means the same outcome in the end - it's just a better way for you to get there. 

Sending massive hugs, 

Annabel. x

Thank you all so much for your support... I feel a little more settled & less hysterical! Lol ...I just had it in my ear that the rout was decided and all I had to think about was which color my new dressing gown was to be, that I was going o take in hospital !,,, then to be told what is now happening came as a shock which definatly wasn't in my plan of action.  

Thanks again, and please keep the posts coming, it's making me feel more positive 

big hugs everyone 

Sam

x x x x

PS ..... While we're on the subject of putting my mind at rest .... I am a little concerned about the fact I have to have a CT PET scan .... Anyone else had one? I have had MRI, so why the need for this - if it hasn't spread, and the nurse said they are not concerned about your chest, but we have to check...... Little bit worried (ok .... I'm very worried )

 

sorry I know I'm going on ...

x x x 

Samantha, 

You don't need to apologise for 'going on'!! You're not - you've just been diagnosed with cancer - you're allowed to be upset and scared! 

Cancer can make you feel very out of control, so getting treatment changed and hearing that things are not quite as you first thought is very unsettling and really doesn't help you mentally. 

They are giving you a PET scan because you're going to have chemoradiation. A PET scan gives a different kind of detail to an MRI - both are excellent scanning tools but obtain slightly different types of information about where the cancer is and the level of cancer cell activity. It can help in getting very accurate staging and making sure they can get pinpoint accuracy in their calculations for the level of radiotherapy that you need. Please be assured that they are not giving you a PET scan because they think something else is amiss. It's true that there are certain possibilities that they have to eliminate - it doesn't mean they're expecting to find sinister things elsewhere, it's just that it would be sloppy and unethical of them not to eliminate certain things. An example I've used elsewhere today - when I saw my consultant a few weeks ago, he removed some residual scar tissue from the top of my vagina. He sent this off to the lab to be checked for the presence of cancer cells - this wasn't because he was at all expecting it to come back showing cancer and in fact that was the last thing he would have expected, but considering my history it would be stupid of him to just throw it away without checking. It was just the sensible thing for him to do, and the same applies with this - it's just the sensible thing for them to do and shows that they are properly looking after you. 

I'm glad you're feeling slightly calmer. Don't worry about 'going on' - we all understand your feelings and you can come here to chat, ask things or rant at any time and as much as you like! :-) 

Annabel. x

Hi Samantha,

You are going through exactly what I went through 2 weeks ago! I had a MRI scan and was told that I had a large tumour and also 1 or 2 suspicious lymph nodes!!  I was then booked for a PET scan and convinced myself that it had spread everywhere! Well my results showed no spread and no lymph node involvement :-) I also had an EUA and a CT scan before the PET scan.

Today is the last day of my first week of treatment (radiotherapy/chemotherapy)  and I can honestly say that it has been a lot easier than I thought it was going to be :-) 

If you need any more info please ask me :-) 

Sue 

Again thanks for all the info - I'm currently at college doing 3 nights a week & my science teacher has echoed everything that you are all saying..... You wouldn't believe how you have all made me feel & put my mind at rest - even more so than the nurse that rang me yesterday... It was as if she couldn't cope with me being a little savvy to it all & didn't really like me asking so many questions - god help the poor consultant when I get my hands on him ....llol

love & lots of huggles

x x x 

Im not sure if it depends on your age. I had radical hystorectomy in January 13 for 2b 4 cm also. Was not given option but was asked if I planned on any  more children. At 47 I said no.

I ws to.d at my 7 week appointment that I didnt need any more treatment, please try not to worry but I now its hard not to. 

Take careSmile

.Diagnosed 12/11/12

Hi Samantha,

I didnt have a PET scan and all was done via MRI.  Please dont worry about brachytherapy just yet as you need to just focus on the chemo and external beam radiation.  Your radiologist will speak to you nearer the time regarding brachytherapy and what to expect with the process and afterwards.  I personally found the brachy the hardest part but other ladies have found the complete opposite.  When the time comes, just keep asking questions as it too me a while to get my head around how my brachy was set out (3 sessions over 2 days).  Again - please pm me if you need anything in more detal.  So glad you are feeling a little better...looks like you've had some top notch advice from the other ladies and we are her whenever you need us xx

hi try not to worry ithough i would have hysterectomy had it would be gone but my tumour is 9cm and told me five to six weeks radio and chemo but told me i would after wait till after easter for treatment so more waiting and worring.had aphone call this afternoon to start treatment i just carnt wait want this gone i know its aworrying time try to be strong big hug sent to u xxx

Thank you all .... Not sure whether its just the tiredness kicking in as I didn't sleep too well last night but I'm now convinced I'm riddled with it !  I keep getting pains here and there and am now thinking there is no hope ..... I will feel better once I know te results of my next scan, brut tats 2 weeks away.... My best friend rang tonight to say her Dad had rung to say if I need to go private, he will pay ! But I don't think things could proceed any quicker ..... Help me put these fears out of my head pleeeaaassseee !!!!

Feel like i'm going mad ....

x x x 

sam your not going mad chick, its all normal what your feeling. when i got diagnosed i was exactly the same. i didnt sleep in two weeks thinking the worse. the tests you are having is so they get your treatment right. it was 4 weeks from my diagnosis to start of treatment but my nurse said it wouldn't have grown in that short time but it felt like a lifetime for me. try not to worry too much.not easy i no. it will be all happen quick after the 9th im sure.just hang in there. xxx

Hi there,
Saw your post the other day,but everytime I tried to post a reply the computer kept booting me off!
Something very similar happened to myself. I too was due to have a radical hysterectomy on 17th January. To cut a long story short my op was cancelled the day before…the surgeon had some concerns that the cancer was was too close to bowel & bladder to get clear enough margins.
It was decided at the MDT meeting that chemo/rads/brachy would be the best option.
I immediately thought the worst…& went into panic mode!!
When I went to see my clinical oncologist she put my mind at rest (a bit!) & told me my course of treatment( 5 weeks daily external radiotherapy, 5 sessions of chemotherapy (cisplatin), & 3 sessions of brachytherapy) would be the best option.
It seemed that it would take forever for the planning etc,& I just wanted to get on with it!!
I have now finished my treatment (last brachy yesterday) & would just like to say it was nowhere near as bad as I thought…yes,I had ups & downs…but just kept telling myself the Dr’s knew best & there was always someone in a worse predicament than myself.
I now start the long wait for follow checks…scans etc…I’m still staying strong & positive…& still smiling :slight_smile: well,most of the time!
Good luck with it all…keep us informed xx
Take care,
Karen xxx

Hi Karen, thanks for taking the time to reply ... I nearly missed it !!!! Well these the doc on Tuesday, who I'm assuming will tell me exactly what I'm in for & I'm hoping it will be all systems go !!!! How you feeling now Karen ? I just don't know what to expect really... Heard some people losing weight, can't get off the loo etc but then others have said they put weight on due tme steroids .... Eeeek !! Just want to get started now ... Any advice on food to eat or not to etc ... Will keep you all informed of the outcome on Tues 

love & hugs x x x

 

Hi Sue .... How's things going with your treatment? How are you finding it all? I go & see the doc on Tuesday, and I'm assuming it will be all systems go from there...

hugs

x x x

 

Hey Sam,

 

just wanted to wish you best of luck with your treatment xxx