Abandoned op - what next?

I just need an opportunity to write down what has happened to me....

 

I was diagnosed with 1b1 just after Christmas. Roughly 2.5cm tumour and the plan was RH and 3 different consultants told me this was treatable and sorted easily with the surgery. 

 

I went in for surgery this week and they had to abandon the operation because of 2mm spread on to top of vagina - tumour itself is still the same size, I guess just it's position is awkward. They said there was a question mark all along as to whether this was the case based on the MRI....but no one told me. 

 

I'm home and in agony from what surgery they did - removed tubes, repositioned ovary and sorted some scar tissue out. I also haemorrhaged badly. 

 

I met the oncologist who will give me the usual 6 weeks chemo radiation or I can opt to be put into the INTERLACE trial and possibly have 6 weeks chemo first. I have no idea what to choose, I'm so confused. I can't believe I have to choose what might be best for me. I'm scared of loosing my hair with the chemo part of interlace if I get it and the longer term side effects of having chemo which they can't tell you about because it's a trial and they don't know. 

 

I'm struggling with how vague they are. All they keep saying is you've got a 20% chance now of recurrence or death in 5 years - chemo first with interlace might improve that, we don't know. It's up to you. I've got to have loads more scans and tests and feels like being diagnosed all over again and they could come back and go 'oh actually, sorry, our mistake, you're 4a not 2a'

 

I'm so tired of it all already and feel dreadful from the pointless surgery that I don't know if can be bothered to do any of it. I don't trust what I'm told and feel like whatever I do I'm going to die anyway, it's just delaying the inevitable. They said it'll be 6 months before I'll know if the treatment has worked....this just seems like forever. You just get treated and sent away to hope for the best for 3 months and then what? It spreads and you die anyway??

 

Sorry for this awful post I just don't really have anyone I can say it too. Everyone just wants - treatment and recovery - however that happens and it's just not that simple. 

Hi Bella,

I am so sorry to hear what you have been going through. I don't think that any of us is in a position to help you make any decisions so all I'm gonna do is suggest you put your boxing gloves on and beat this M-F. We will all be right behind you the whole way.

Personally, I do not understand the reasoning for abandoning the op. In my situation they simply removed as much vagina as was necessary and told me afterwards. It's probably different where you live.

All the best sweetheart

Tivoli

 

He said he could of done the RH but knew I would def need chemo radiation and was reluctant to give me double whammy as it would be a lot to cope with with side effects etc. he said there would def of been a positive margin if he'd done the op. 

Just dont know know what to do know....(except crawl into bed and pretend it's not happening)

Hi Bella

What a rotten situation you find yourself in! I'm not surprised you feel shocked and confused. Tivoli is right, get those boxing gloves on. You might not feel like it at the moment - I'd be crawling into bed too - but I reckon you will find yourself feeling differently soon. A strength you never knew you had will appear out of nowhere and you will take charge. It's an emotional roller coaster, full of ups and downs. This is a down bit but an up bit will be along soon. You've just had some very disappointing surgery and I can only begin to imagine what it must be like to come round from that and be told what you were. Heart going out to you and sending a hug!

Being asked to make a decision at this point is making it all the  harder. I can't make decsions at the moment about which jumper to wear because my brain is so addled and I'm 8 weeks post-RH. You must feel over-whelmed. I have no advice on what you should do and I suspect your oncologist will continue to be vague because the decision needs to be your choice. Not very helpful! How long have you got to make your decision? It's stressful enough when you have to decide something big let alone after a big op and with a time limit.

Do you have a local cancer care organisation? I've recently been into one and could have cried with relief. The people there had time to talk to me about what I'm feeling and they are expert in what a person goes through in these circumstances. It was such a comfort. I don't think you should feel guilty about crawling into bed and pretending it's not happening if that's what you need to do at the moment. You won't always feel the way you do right now and forcing yourself to make a decision when your head is spinning won't get you anywhere fast. 

So Bella, watch a feelgood film, get yourself as comfy as you can and pretty soon you will want to reach out for those boxing gloves. As Tivoli says, we will be right behind you. You can do this.....maybe just not today. :) 

Kirsty xx

Sorry you find yourself in this place.  We've all been there, and the begining of the journey is the worse.  I would hate to be asked to choose, and I think it's wrong.  They should know best and do what's best, but I guess it's because it's a trial.  I was 1b2, I was never offered surgery as my tumour was too big, so I had chemoradiation.  I don't understand whay they are talking about 20% chance of recurrence or death in 5 years, I think they have their facts wrong.

 

Hugs.

Hi Bella

So, so sorry to read what you have gone through and what you are having to deal with now.  What an awful decision to have to make.  I was 1b1, the tumour was higher up and I had the top part of my vagina removed.  You really need to talk to more people about this to get as much information as possible, only then can you you make a decision.  I'm sure the people at Jo's can help and also Macmillan - your GP should be able to help too.

We will all be here for the emotional help and support you will need, you can do this, never ever give up fighting.  There are times when we feel really low with this then something kicks in and we get our strength and courage back.  I was very ill when I was taken into hospital the 2nd time and there was a day when I just wanted it all to end and I was ready to give up but I turned a corner later that day and mentally I got a lot stronger which in turn helped me deal with what was happening.

Sending you big hugs,

Cheryl,xx

Bella, I can only tell you what I think based on my own experiences and hope it may help in some small way.

I was diagnosed stage 2, Dec 2013 and was told my tumour was 4cm and the way forward was to give me a radical hysterectomy. I was offered surgery the following week Xmas eve. I was gobsmacked and needed time to get my head round the fact I'd never have a baby. Also, stupidly, I was worried about ruining my family's Xmas. I asked my consultant if it would make a difference if I waited. He said no (boy, would I like to punch him now!) In the end I waited so long for surgery (Feb 2014) that by the time they opened me up it had started to spread. They abandoned the hysterectomy and removed quite a few lymph nodes. They told me what they'd done the next morning, along with the fact I'd now have to have chemo/radio. I then had to wait til I had healed before I could start. I had chemo/radio then had the obligatory 3 month wait til I had the scan. It showed that although my pelvis was clear it had spread and I had spots on my stomach, spine, lungs and neck. I started chemo in Sept and my last scan confounded their expectations and everything has almost disappeared. I'm going to continue with more chemo. I needed to tell you the whole story to put my following points in context. Firstly, I think if I had had (full strength) chemo after surgery then there's a pretty good chance I wouldn't be where I am now. The way I see it, chemo would've treated my whole body and any little micro Mets that were there. Instead, the chemo given alongside radio only enhances what the radio does. Secondly, losing my hair was hard. But when chemo works and you get on with your life your hair will grow back. Thirdly, as one of the other ladies said, we all have moments when we want to give up. Mine was when my boyfriend dumped me after surgery.and then again after my first chemo - I didn't take my anti-sick quick enough,ended up in hospital on a drip. I laid on the floor in the bathroom wanting to fall asleep and never wake up. That night my 10 year old nephew phoned me. I turned the corner, my resolve strengthened. Since then chemo has been quite straightforward. You will find a strength within yourself you never realised you possess. I wish you well sweetheart and if you want to talk I'm here. Xxx

Hi Bella, so sorry you are going through this, its a horrible thing to go through. I also got the option to choose but I just went withthe original plan of chemoradiation as I just felt that was right for me, there isnt a right of wrong answer really since its a trial I think it goes down to the indevidual.

Dont listen to or read any of those silly satistics! my doctor and care nurse both said that they dont actually follow up anyone after 5 years, so the girls that are living their lives out sunning them selves in spain or just living life normal happy lives after all this doesnt get a mention because the sastistic only cares what they do up until 5 years apparehntly.

come on tiger you can do beat this!xxx



Thanks all. I'm feeling a bit better now than I was. The support is really helpful. Still in quite a lot of pain but improving day to day. 

 

Im going back to hospital tomorrow to start the ball rolling and I'm going to go for INTERLACE and see what happens. Maybe a bit of what if in the future if I didn't is niggling at me. I don't even really know if I'd prefer the treatment group or not. 

 

The main thing I'm so concerned about is the delay in treatment as it'll be 8-10 weeks from diagnosis to treatment depending on what I get and I just feel every time something is decided on, it slips through my fingers as the situation has changed again. 

 

I have a very real feeling that this is the end for me and I won't be able to beat it but I don't know if that's normal for all cancer patients or whether I have an acute sixth sense of the situation. 

 

Thanks all for the immense support - there's no one I can really talk to otherwise xx

Hi Bella,

I'm so glad to hear you're feeling better and glad you've made a decision. You can tick that off your To Do list!

I think lots of us have had that "real feeling it's the end" at some time after diagnosis. (Am I right, folks?) It's such an awful thing to think about that the mind seems to kind of try it out. We sit there thinking we have some kind of sixth sense and worrying. I'm convinced we have a little dramatic area in the mind that likes its moment centre stage. Mine certainly pushes the sensible bits of my mind off the stage every now and then! None of us really knows what the future holds but and people who get better rarely remember the sixth sense that told them it was all over. They're too busy getting on with their lives and I hope that time will come to you very soon. :) You've had such a lot to take in and it's all a bit rubbish but, as PinkGlitter says, you can beat this. Sending you a huge hug! :)

Kirsty xx

Yes Kirsty, I think we have all had 'that' feeling.  I think the saying 'I'm sorry to tell you, you have cancer', immediately sends your mind into overdrive.  Ask any one person, what word they associate cancer with, and they will say death.  But, things have changed, and cc is very treatable.  Ask any cancer survivor what word they associate cancer with and will give you another answer.  Mine would be, life changing.

HUUUGE HUGS

Yes Kirsty, I think we have all had 'that' feeling.  I think the saying 'I'm sorry to tell you, you have cancer', immediately sends your mind into overdrive.  Ask any one person, what word they associate cancer with, and they will say death.  But, things have changed, and cc is very treatable.  Ask any cancer survivor what word they associate cancer with and will give you another answer.  Mine would be, life changing.

HUUUGE HUGS

Yes, hands up to that feeling, on several occasions! It's a doozy.

Very well said April.

Be lucky

Tivoli