Diagnosed yesterday

Hi everyone
I was diagnosed with cervical cancer yesterday and have had the shock of my life.
I’m 33, all smears have been normal up until the latest one. The speed at which things were turned around after colposcopy last week made me suspect it was on the cards, but I guess you are never prepared for the news.
They found cancer but it is behind wall of cervix and has started to appear as red dots on cervix ( which is what the Oncologist saw in the colposcopy last week). The Oncologist told me it’s stage 1b at least, but need to have MRI to determine and confirm treatment plan.
He’ll try to preserve fertility if possible, but otherwise it is chemo and radio.
I haven’t had a family yet, although to be honest my main concern at the moment is getting this out of me!
I have MRI on 29th March and result and treatment plan Monday 3rd April. It feels like a really long time to wait, although I appreciate some of you on here have had a lot longer to wait.
Trying to stay calm but feel extremely anxious and keep thinking, what if it has spread, what if this, what if that etc, which isn’t helpful…
I have my mum staying with me, a very supportive boyfriend and an extended network, but would like to reach out to those who are going through or have been through this.
Thanks in advance
x

Hi im sorry  to hear  another lovely  lady  suffering  i finished  my treatememt  nearly  2 weeks ago the wait 4 your scans is not to bad  i no for u  it will  feel  lik for eva  my scans  were about the same wait as yours im so glad  u got a good support network it really does  help well it did  4 me try n get plenty of rest when you can  i found  treatment  very  draining any questions  plz feel free to ask this group as helped  me so much  as  other  ladies will also tell u stay  off Google ask your question's  on here instead of scarying your  self  silly with Google responses  xxx

 

 

Hi - thanks so much. And really sorry to hear you have been suffering too.

It's been an enormous help to speak to people who are going through the same emotions etc.

How are you feeling now after your treatment?

Best wishes

Rachel

x

Hi Rachel

sorry you have found yourself here,but this really is the best place to ask your questions and get support. You will get honest answers, unlike Dr Google. 

I know your head will be spinning just now an there is so much going on and so much to take in,thats natural.

waiting on tests,results etc is the worst,it will drive you nuts at times. your team just want to get the best treatment plan for you and it takes time. You will find that once you start treatment,it will wizz by in no time. Try and stay calm just now,keep yourself nice and busy.

the ladies on here are awesome with advice and we have all been where you are,so keep checking in. Dont be scared to ask anything at all.

tracey x 

Hi Rachel,

first off I would like to say sorry to hear about your diagnosis but we are a great bunch and we do know exactly what you are going through. When I was first diagnosed and even through treatment this forum helped me more then I can explain. It is such a great place for support in many ways. Whatever questions you have feel free to ask. Sometimes it does take a day or so to have responses but we are all usually ready to step in and help offer answers or support. 

Where you are in this journey is the hardest part. As the time passes and you become more knowledgable about the whole process you will start to notice the grey cloud lifting away. It's not all doom and gloom. 

Try to stay busy as to not constantly be thinking horrible thoughts. Cervical cancer is very curable and pls pls do not take what you may(but shouldn't even read) read online about stats as most are very outdated and do not give accurate answers. I cannot help much about fertility but can say the chemorad is very doable and it's not as bad as you think. The thing that surprised me the most about chemorad is that it's not like the movies make it out. 

Make sure you are getting enough sleep so you can stay mentally strong and this allows the anxiety to stay controlled. 

Let us know how your appointments go or ask away any questions. 

If your dr suspects you are 1b then usually the scans are the same or not far off so no need to think you are riddled with cancer throughout your whole body. 

big hugs

Ladies thanks so much for your messages and support it is a huge help!

My MRI scans are next Wednesday 29th April then result Monday 3rd April and hopefully clarity on treatment plan.

It's so so helpful to talk to you thank you.

I did actually sleep last night so feel much stronger today. In dark moments it is hard not to worry and think the worst, however agree that knowledge is power will stay away from google.

How are you getting on after chemo/rad?

Thanks again

x

 

 

Im still suffering with  side affects  of radiotherapy  n brachy im up hrly in day n night to loo so shattered as not  getting  quality sleep  but  these all pass  in time  i had  to have bilateral  nephrostomy  ( two external  kidney  drains) as the  tumour  was  putting  pressure  on my tube from my kidneys  to my bladder  so my kidneys  wasnt  emptying  properly  so my next  goal  is for my consultant  to say im ready  to have  them  out hope fully  iust  a couple  more weeks  fingers  crossed xxx

Hi,

im 6 mths past treatment and overall I feel great. I have some issues with sciatic pain if I forget to stretch but for the most part I feel like every month that passes I feel less and less effects from the radiation. Chemo never bothered me at all, the radiation gave me horrific diarrhea and I had a burn at the end. Everyone is different for side effects and length of recovery but for the most part we all say it wasn't as bad as they first initially thought it was going to be. 

My only huge advice about this whole thing as one big process from diagnosis to post treatment check ups is to stay positive. think of your mental health as much as your physical health.  Find ways to stay positive and practise technics to stay mentally ok. 

You can do this and come out on the other side of treatment ok. 

Xoxo

I am also 6 months post treatment,and have my second check in 10 days. I am still super tired yet and mentally a bit messed up,but seeing a counsellor now. The bowel and bladder issues I had went quite quickly thank god.

I really never had any major problems with rads but my last chemo got cancelled due to having serious reactions the two previous weeks. I found brachy pretty much easy as well,but just glad its all out of the way now. As Lolli says,you have to keep thinking positive all the way through it,I had my friend with me most chemo days and we just giggled the whole time. Chemo wards are not like you see on tv,its not all doom and gloom. This treatment is very doable. Xx

Sorry to hear ur news, I found myself in ur position a few weeks ago and now waiting for phone call to start my radiotherapy an chemo. It seems like a lifetime away in those first few days but it will go really quickly.

 

Also the support on here is amazing, my fears were quickly put to bed once u hear about others journeys an having their support.

Good luck an sending huge cyber hugs

Dawn x

Hi all

Thanks for sharing really useful to hear your stories and really encouraging.

@Lolli888 and @Brucegirl57 pleased to hear you are out of the other side now, must've been a really challenging journey.

@Helpme sorry you are still suffering and sending positive thoughts

@Dawn, good luck and hope you get your dates soon. It does indeed feel like such a long wait. But i'll find a way to get through it. Keeping distracted and busy is helping, and talking to you all is a huge help.

All the best

Rachel

x

 

Hi, Ive had a similar experience too! I was diagnosed yesterday after an abnormal smear result and having a loop biopsy taken at colposcopy. My last smear taken soon after I had my little boy 3 and a half years ago was all clear but mine has started in the glandular cells which apparently is really tricky to detect on a smear! I had no idea a smear might miss something, I was always under the impression cervical screening would always pick up an abnormality so feeling really angry right now, as well as sad, scared and shocked!! I have my MRI tomorrow morning to stage it....I just hope to God its early! We had hoped for baby no.2 but this is now looking unlikely which is a major part of what we need to come to terms with too! Stay strong, I know we can beat this!! 

So sorry to hear of your diagnosis, but pleased we can support eachother on here.

I had a similar conversation with the Consultant (although I'm not sure if mine is glandular or not) and they said sometimes things are missed on smears and they often go back to look at results and find something. I thought the same if smears were normal everything was normal right?!

Best of luck for your MRI and will be thinking of you.

Mine is booked next week as still healing from LLETZ which was done last week.

Sounds like there are long term things for both of us to come to terms with potential for children in the future, I guess for now it's about getting through this unknown part, getting treatment plan and then seeing what the options are.

Good luck and we will beat this together!

Rachel

x

Thanks for the good luck wishes Rachelw84!! The MRI really wasnt that bad, just really noisy!! I kept my eyes shut to begin with, had a little cry and then got braver, I just wanted to focus on being as still and as calm as possible so they could get the best images possible to help them decide what to do! Ive had call from hosp today to say they've reviewed the images and want me back in next Tuesday to talk treatment options, feel more positive now things are happening rather than just waiting around! Good luck with your scan next week!! I still cant believe there are so many ladies like you and I who have ended up here after clear smears, but you're right we can beat this together!! We are young, strong women and everyone keeps saying its a really treatable form of cancer so lets kick it into touch!! Xx

Absolutely sounds like a great plan!

Glad the MRI's were ok. Good luck for Tuesday will be thinking of you.

Mine are next Weds so will let you know how they go.

Definitely good to have a plan then at least you know things are moving. The waiting around part is the worst! I was telling someone yesterday it's like a test of your sanity, getting this news and then having to wait a few weeks to know all the facts. You wouldn't think it was possible, but it's amazing what you can do and how strong you can be in these situations.

Take care, good luck xxx

Just to let you know, I had my follow up meeting with the gynea- oncologist today and ive been staged at 1b1, they think they may have got it all in the biopsy too! But lots of pre-cancerous cells still in there, and while the MRI is clear and lymph nodes appear clear, they can't gurantee it isnt already developing elsewhere so its a radical hysterectomy and lymph node removal for me! Partly relieved its not more advanced but also a bit sad! Op booked for 26th april xx

Hi Rachel,

I was diagnosed 1b2 Adenosquamous (mixture of glandular and surface cells) in November 2015 aged 32. I had a radical hysterectomy and removal of ovaries and 23 lymph nodes and was subsequently downgraded to 1b1. I can echo what other ladies have said the support on this forum is incredible and although I too had a great support system, like you say it's good to have the support of others who 'know' what this diagnosis feels like.  All my smears were up to date and negative, however following an audit we have discovered the three I had over last ten years were all false negatives which is frustrating but cant be helped now.  I have been assured that I was just very unlucky and that cervical screenings are usually an effective way of early detection.

I too am a worrier by nature but I found that sticking to the facts and doing lots of mindfulness excercises and breathing exercises really helped (I use the headspace app on my phone). I also think, judging from a lot of the stories on this forum, that usually the consultants are fairly good at estimating the staging and if anything would tend to err on the side of caution where possible, so that there are no surprises with the MRI results (though obviously I'm sure there are exceptions - but let's not dwell on that). 

I felt better when I knew the treatment plan, and could start organising things as I like to be in control!  If you are staged at 1b1 following your scans hopefully they may be able to offer you the trachelectomy to preserve fertility, if that is something you feel strongly about.  I have a daughter, she had just turned 2 when I was diagnosed and for me the trachelectomy wasn't an option due to position of tumour.

Anyway I just wanted to say hello and good luck and reassure you a bit and feel free to message me if you want.

Take care

x

 

Hi Lovely ladies sorry for the late reply I had a few days offline, not for any negative reason but mainly because I've had a busy few days seeing some lovely friends from work, getting involved in a few meetings etc.

Also had all my MRI's on Weds.. it was fine, the ladies were super lovely and made me feel at ease. The first one was the most bizarre because they inserted a probe and did the MRI at the same time! But to be honest once it was in position it was ok. They put the radio on for me so I could listen to some good tunes at the same time!

@MrsM I am pleased you now have a clear picture and plan! sounds like they are being super cautious in booking your op to make sure they get every last bit of it. How do you feel now? Are you allowed to have a bit of normality before your op?

Still must feel so surreal but glad you've got a date to work towards. Sending love.

 

@Mad_muskrat

Thanks so much for sharing your story with me that is really kind and also really reasurring to hear. I've been doing some yoga and some walks, meeting friends/family for lunches and coffees and generally trying to live a normal (ish) life.

Even if you have a great support network nothing beats talking to people who are going through/ or have been through the same thing. I had a bit of a downer yesterday as I had news that a good friend of mine got engaged whilst on holiday in Thailand. Although I am genuinely super excited and happy for them, it really hit home that everyone is getting on with their lives and mine is currently stood still. Had a bit of a moan/swear/cry to my mum and boyfriend then they went out to buy some wine and cheered me up! Just a bit of a roller coaster isn't it.

Thanks again for getting in touch and will definitely keep you all posted.

My appointment for results is on Monday...eeek.

Love

Rachel

xxx