Hi everyone,
I had the shock of my life last week when my consultant diagnosed me with cervical cancer!
I'm 30, healthy, fit and active and I'm really struggling to cope. I'm a physio so I work all day long with other people's diagnoses and problems. Since the diagnosis I've carried on working and have just got on with things with no issue but when I had my MRI yesterday I suddenly realised that this is actually happening to me...not one of my patients and since then I can't stop crying.
I get the results tomorrow and the doctor is hoping they might just have to remove my cervix so that we can still have a family but I just cant help fearing the worst. They've said that they'll complete a hysterectomy after I've had kids but I don't want to risk it coming back in that time...I'm so scared. I know I'm just going to have to wait for the results and see what happens but all of this is so damn unfair...any strategies for how you guys cope would be much appreciated!!
My partnet and family are all super supportive which I'm grateful for but I'm so worried about the effect it's going to have on my relationship...I don't want to be weepy and weak...I want to just be able to get on with this.
Thanks for any support guys xx
Hi Sarah85,
I can completely understand how your feeling at the moment as I am in a very similar situation myself. I too am a health professional and am finding it very hard to suddenly be the other side of the bed. Unfortunately for me my tumour is too large to remove my cervix and preserve my fertility. I can relate to your fear of it coming back though. I think chemo/rad is going to be my treatment plan but I have considered asking for a hysterectomy to reduce the risks.
It's such a lot to get your head round. I really wouldn't worry about being weepy and feeling low. It's normal! This is a massive life changing thing you are having to cope with and those that live you will understand.
My partner and family are also being amazing. I'm not sure what I would do without them. We are facing a bumpy road ahead. Stay strong and fight the fight.
A friend of mine recently sent me this quote 'Don't keep calm and carry on. Wake up every morning and bitch slap that cancer till it's gone'.
Good luck Rachel x
Hi Sarah
I'm so sorry about your diagnosis - your situation sounds very simliar to where I was last January. From my experience the waiting part is the absolute worst. Once you have the results and know what you are dealing with you will feel better and more in control.
I think the lack of control over my situation in those few weeks of waiting was the worst for me - so I took control of what I was able to. For me, this involved getting myself as healthy and stress free as possible ready for treatment. I exercised, did yoga and meditation, cleaned up my diet, started taking vitamins and tried to book in some nice things to do. This REALLY helped, as I felt I was doing something and I'm sure it made my recovery quicker.
I was dignosed with 1B1 Squamas cell and had a tracheletomy (cervix removed) and lymph node removal. As I understand it, they will ONLY do this op if they think it will be curative. So if they offer it to you they will be confident it is the right treatment. I've never heard of anyone being offered completion hysterectomy surgery after children so that's an interesting thought. Oh and they will also keep a REALLY close eye on you after a trachelectomy to make sure everything has been successfully removed and there are no further problems.
If you end up having the trach, it is a big op but nowhere near as terrible as I expected. ANY questions just ask.
Let's hope your cancer is very early and can be treated quickly for you.
In my thoughts and prayers x
Hi guys,
Thanks so much for your replies :)
Rachel....your friend’s quote made me chuckle so it was worth coming on here just for that!!:)
I wish you tons of best wishes fighting this...when do you start your treatment? Is your work being good with you? Before my diagnosis I got offered a promotion at a different hospital...all my checks are going through at the moment so I’ve not mentioned it to them yet but I’m wondering if they might withdraw the offer as it was conditional?? Not sure if that’s illegal though? Luckily I’ve not handed in my notice yet so I won’t be jobless!! Too much to think about!!
Nellie....I’m definitely going to try and plan some things to occupy me...I made an effort to go out walking in Wales last weekend and my friends/family have been keeping me company which is great. I already booked a weekend away for my boyfriend’s birthday at the end of July so I hope I’m ok to go still! It was all planned before the C-Bomb fell!
My consultant says that she thinks I’ve got 1B1 adenosquamous carcinoma but yeah as soon as she said a trachelectomy was an option she said that they’ll want to give me a hysterectomy later...I just assumed this was standard?? I’m under The Christie Hospital in Manchester so I’m assuming they know what they’re talking about! How long did it take them to do your surgery once you were diagnosed?
My boyfriend got a promotion a month ago which means he’s now travelling all over the country all week...I’ve not seen him since Sunday and all he’s had is me crying down the phone at him every night...I feel really rubbish about it! It’s such bad timing this job change L! He’s back tonight so I’ve bought him steak to make up for it!! Hopefully it’ll make us stronger in the long run.
Random question Nellie but is stuff still good down there relations wise? Does it feel any different? If that’s too personal a question sorry!!
So sorry you guys are going through/have been through this! It absolutely sucks!!! It’s just so hard to comprehend why it’s happened but I suppose there’s no point thinking about it too much.
Lots of hugs to you both..I’ll let you know what happens tomorrow!
It makes me smile every time I see it so it is currently my wallpaper on my phone :-)
I haven't got a start date for treatment yet. My scans etc go to MDT tomorrow so should know more tomorrow afternoon. Work have been amazing, still working at the moment but have spoken with occ health and they have recommended office based on reduced hours until treatment starts to allow me to be as fit as possible to fight this. I am lucky that I work in a community based setting so that is a viable option. I don't know if they can withdraw your job offer on the basis of this-very fine line for them to tread I would think.
I hope your other half enjoys your his steak.
Keep in touch as will I.
Rachel x
Hi Sarah
Different hospitals/consultants seem to treat cc slightly differently - plus every case is different. mine was also the squamas cell type so that may be the difference as well??!.... who knows!
I was actually diagnosed via a Lletz which they believed had removed most of the tumor. I had my trach op exactly 4 weeks after being diagnosed. Because I had the Lletz they were pretty sure what they were dealing with at the start so that may also account for the speed.
In terms of 'relations' and any other sensitive stuff, ask away!!!
For me everything has pretty much gone back to normal, I can't tell any difference at all with intercourse. I did get a bit of bleeding at first but this has now stopped and normal 'activities' have resumed. You do have to avoid sex for at least 6 weeks after the op as well. My periods also carried on pretty much as normal - slightly longer cycle and a fair bit heavier but i LOVE getting my period now as it shows it's all still working! I do know other women who have taken a little while to get their cycle back and for it to settle down and this is also perfectly normal.
Have they diagnosed you via a Lletz or a biopsy out of interest?
There is a really good blog from a girl who fought for a trachelectomy - you should check it out, it really helped me x
https://naomiorme.wordpress.com
Nellie x
Hi guys, hope you don't mind me butting in!?! I had a hysterectomy for 1b2 in August last year, also squamous cell with a good dose of radio on top! Relations are fine. I couldn't face the dilator so I decided to use my husband instead ;-) xxx
Thanks Helsweld, I am looking at chemo/rad as treatment. Really good to know that normal service can resume!!!
Rachel x
Hi Sarah,
So sorry to hear what a scary time you are having, but you're definitely in the best place now :-)
As others have already said, as soon as you get your staging and your treatment plan it all becomes that much more manageable, but certainly I remember very well the dawn of realisation that OMG this is real and it's me, not some random person.
I'm keeping my fingers crossed for you that you can get away with a trachelectomy for the time being. Unfortunately for us my tumour was so large that I lost a significant percentage of my vagina and no amount of dilators can rectify that. But, I am loads older than you and had already completed very many happy years of rolling around with Spouseman so we're just learning to deal with the fact that we are now old people who don't :-( It's sad but it isn't the end of the world.
Be lucky :-)
Tivoli
Hi again guys! Nice to see some more people have joined us :)!! This forum's amazing....makes you feel so much better talking about this things to people who know!!
I've just had my call and it's the best news I could have hoped for :) She says that there's no spread visible to any other tissue so she's referring me to the Christie Hospital to speak to the consultant there. She said if I'd already had kids they'd recommend a hysterectomy just to remove the risk completely but I want to hopefully have a family so she said it might be possible just to complete another cone biopsy to remove a bit more tissue or go for the trachelectomy.
Considering I know that I've got CIN 3 and that's already mutated into cancerous tissue I think I'm of the opinion that I'd rather they just took my cervix out....I might not be so lucky next time and the thought of going through this again is horrendous. I don't want to put my family through it again either!
That way I think I can get on with things and possibly having a family without worrying about things lurking down there.
I'll have to see what the guy at the Christie thinks anyway.
Thanks for answering the personal questions guys! It's stuff you don't really want to ask your consultant about! I'd never even heard of dilators!!
Nellie....I had my cone biopsy 5 weeks ago (it was this rather than a lletz) and my cons told me we couldnt have sex for 8 weeks! I wonder why when you only have to wait 6 with a tracelectomy?! I'll have a gander at that blog hon....thanks for that :)
Rachel....do you have any news yet?? Best of luck and hugs :)
Ooooh also guys....I have a query about HPV if anyone knows the answer? I'm pretty sure I caught the HPV off my current boyfriend as I only had abnormal smears after meeting him and he has the wart virus. As far as I know there is no way to test whether he has HPV currently...how do I know that he's not just going to give me this high-risk HPV back again and risk all this again?? Obviously I know we could use condoms but we're in a long term very happy relationship and we'd rather not. Plus I doubt it would happen 100% of the time even if we agreed to it!!
Does HPV only affect cervical cells so if I had my cervix removed would that remove the risk?
I'm not sure there is a definite answer to these thoughts but has anyone had similar thoughts/questions?
Thanks guys :)
Hi Sarah,
Super news that they think they can remove it all with a cone biopsy or tracelectomy. I am not so fortunate unfortunately. My CNS called today to schedule an appointment with gynae oncologist on Tuesday but treatment is definitely chemo/rad. Only option as far as I can tell regarding fertility is to transpose my ovaries out of radiation field. Will need surrogate though. Am hoping this will all become so much clearer on Tuesday. So much to take in all at once. I never for one minute dreamt that I would never be able to carry and give birth to me own child.
Onwards and upwards though. My health is the most important thing and I'm ready to do some serious bitch slapping!!
Rachel x
So sorry you're having to go through all this Rachel....I have no words to express what a crappy hand you've been dealt and if there's ever anything you need to talk about please give me a shout :)
I know you probably won't be able to stop thinking about the future but your health is the thing you need to focus on at the minute. I'm sure later down the line when you've done bitch-slapping you'll be able to look at other options for having a family. You must be feeling exhausted and drained with all this hitting you all at the same time and I'm sending you tons of luck and best wishes. Big hugs xxx
Thanks lovely. Your kind words mean such a lot. We will get through this and then, as you say, there are other options.
Rachel x
