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Newly diagnosed so scared

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Violet123
Newly diagnosed so scared

Hi everyone can i just say this site is amazing and been on and of here for a while thankyou to you all for the support and love

Ive just been diagnosed with stage 1 1b cervical cancer i am absolutley petrified this all started about 9 months ago smear came back abnormal i had a coloposcopy done Lletz i was told all went well until 6 months later when i had my smear and it came back abnormal cells on the glandular cells so i had to go in for a biopsy i was waiting for a letter every day it got to the 3 week mark and i though wow no news is good news how wrong was i i got called in on wensday to say i had stage 1b cancer im terrified im just waiting for my MRI scan then a hysterectomy please can i ask does anyone else suffer with lower back pain and groin pain im so scared it will come back with a diffrent stage thankyou for reading ❤

Lotty9000

Hi Violet

I'm so sorry that you find yourself in the position you are in. This part is so scary test after test and waiting for the results and final staging. I’m the grand scheme of things they do move quickly but it doesn’t feel like it. 

Thinking of you and whatever happens you got this xxxxx

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

26/9/19 pathology confirms NED:-)

Violet123

Hi lotty9000 thankyou so mich for your reply im still in shock and absolutley petrified ive been so scared with being staged 1b but is all i keep seeing is tou hardly have symptoms in the early stage only in the advanced stage i no i shouldnt google or read up on things but it scared me so much as i have 3 children but my main symptom is the back ache its so severe some days thankyou for your reply ❤

CJ2019

Hi Violet, I am so sorry to hear of your diagnosis. I was diagnosed with stage 1B in january while 6 months pregnant. I had some back ache but think this was mainly pregnancy related?? I have been where you are and I know it feels so scary and overwhelming but YOU CAN DO THIS! The main thing is you have caught it early, your getting yourself the treatment you need and can be doing nothing more than just taking care of yourself mentally. I found I had a few sleepless nights and being on this forum and some others on Facebook really helped talking to others who had been in my shoes. Also don’t know if it would help but I wrote down everything I was worried/scared of and getting it out onto paper in the middle of the night (and having a good cry) and I would then go back to bed and get a good sleep! 

There is so much support out there- 9 months on I’m in remission after chemo and surgery, it’s been the longest 9 months of my life but feel so lucky. Number 1 peice if advice would be: take care of yourself, pamper yourself wherever you can and take every bit of support that’s offered. Sending lots of love xxx

CJ

Violet123

Thankyou so much for your reply believe me it sure does help and brings me comfort im so sorry about your diagnoses wow i am so happy you are in remission absolutley fantastic news i hope you and little one are doing great thankyou so much for the advice i just feel so alone even tho i no im not alone there is so much love on this site support and help i just want to say thankyou to you all big hugs to you ❤

LJKelly87

Hi violet,

Sorry to hear of your diagnosis. I have also been diagnosed with stage 1B. My diagnosis and MRI has all happened in the space of 2 weeks and I am awaiting a date to have a radical hysterectomy. I am also petrified of not only the surgery but what happens after this. I am finding it difficult to actually process everything and because I have little symptoms, other than persistent lower back pain, I dont think I am actually getting my head around things. 

I hope you get your MRI soon as I know the waiting is scary! As was said in the previous post you can do this and you are getting treatment! I have had a few sleepless nights and I'm sure there will be more to come but I like the advice of writing things down that you are worried/ scared of and I will be trying this.

Sending lots of love xx

 

 

Violet123

Thankyou so mich for your reply its such a scary time for us all for me its the not knowing and like you said what happens after im still in totall shock i really didnt expect this especially 6 months down the line from my first smear where i had the cells removed and was told everything was fine ive had lower back and groin ache for a while now but it seems to be getting worse im so nervous worried and scared all at the same time but this site helps me so mich its amazing your all amazing but we can and will get through this thankyou so Much i really apreciate your reply and i so hope everything goes well for you big hugs ❤ 

noodlesdoodles

Hi Violet, 

sorry that you find yourself in the club no- one wants to be in. It is scary and a rollercoaster ride especially when you are waiting for tests and results. It’s the worst.Just go with whatever you are feeling, keep busy and look after yourself.  I was in your shoes in June,but am out the other side now. It felt like forever to get scans etc. then staging and a plan. Once you have a plan you have something to focus on. You have all the support you need here at anytime as we all know how it feels. Big hugs xxx

May 19 - smear

June 19 colposcopy and LLETZ

June 19 told CC

CT.  MRI. 

July 19 - EUA spread to parametrium 2B

16 July- results. Clinically 2b/ radiologically 1b1.Given choice of chemorads or RH 

21 Aug - Laparotomy.  No spread staged 1b1 so Radical hysterectomy 

2nd Sept -  no residual tumour and nodes clear

Violet123

Thankyou so mich for your reply it means alot i think its just the not knowing at the minute but im sure once the tests are out of the way and i have a plan in place i will proberbly feel a little bit better everything just seems to be happening so quick im so glad your out on the other side i really do hope everything goes well for you thankyou again big hugs to you ❤

Lilypingu

Hi Violet

I’m so sorry you’ve had this diagnosis...it’s such a scary time. Hopefully the mri will confirm the stage and you can go forward with the operation. Lots of ladies have had it, so I’m sure you’ll get lots of support. Just wanted to pop in and send you a virtual hug. xx

11.9.18:Hysteroscopy/punch biopsies

18.9.18:CC diagnosis-2b

19.9.18:Pelvic MRI

24.9.18:CT pelvic + abdomen/thorax

1.11-24.12.18:4 cisplatin, 32 radiotherapy

10.12.18:Pulmonary embolism

18.2.19:Post treatment check up

28.02.19:Pelvic MRI

02.04.19:3 month check-NED

25.06.19: 6 month check-all ok. 08.10.19: 9 month check. Area of concern found. 17.10.19: Pelvic mri
Oonsy

Hi Violet,

Firstly you're in the right place, I couldn't have gotten through my journey so far without the support on here!

I was diagnosed 1b2 in July and have just finished chemoradiation and brachytherapy. Like you I had zero symptoms except for backache (which I put down to driving a lot in my job) and a clear, water discharge with no odour!!

The worst part was waiting for the scans and planning before treatment started, every second felt like a year! So what you're feeling is normal. 

It is also terrifying as you feel your life has been taken before you and it's so out of control! But what I have learned as treatment has progressed is that you cannot control everything and you have got to let the experts do what they do best. Keep yourself busy, have a 'task' to do every day so you feel like you have achieved something, even if it's only spending time on here!! Don't stay from this site, don't rely on Dr Google, everyone has a different body and experience and what you might go through will be different to someone else.

When you start treatment the time will fly in, you won't see the days going in and its is absolutely not as bad as everyone thinks! 

When you find out your plan get prepared, buy your bits and bob's and have everything close at hand that makes you feel comfortable. Then sit back, ride the treatment train and let the experts look after you. Communicate loads with your team and if you think something doesn't feel right tell them! 

In a few weeks you'll look back in disbelief that everything is done and recovery is beginning.

Loads of love and strength,

Oonagh xx

StrongGirl
StrongGirl's picture

What a wonderful reply! I love your advice to "ride the treatment train!"

 

HPV-18 positive 2015, 2017, 2018, 2019; 09/17/19 colposcopy- CIN1; 09/27/19 LEEP; 09/30/19 Endocervical adenocarcinoma in situ. LEEP margins not clear; 12/13/19 CKC scheduled;
StrongGirl
StrongGirl's picture

Hi, Violet. I understand your fear. I was diagnosed with adenocarcinoma in situ discovered during a LEEP procedure on Sept. 27. Now I am waiting to have a cold knife cone biopsy but the oncologist wants my cervix to heal from the LEEP I just had. SO...my cone isn't scheduled until Dec. 13th! That feels SO far away. I too am experiencing lower back pain. I find that aches and pains I used to just live with now seem so sinister to me. I am concerned about this low back pain because I've had it for a long time. I always just thought it was sciatica. But it's definitely worse these days. I know I am getting too far ahead of myself, but my fear is that he will do the cone and see that it is no longer in situ, then we'll do scanning and we'll see that it has spread. All of that just to say, like you, my mind goes to very dark and scary places. I found this quote the other day that really resonated with me: "Worries are pointless. If there's a solution, there's no need to worry. If no solution exists, there's no point to worry." I'm here for you. 

HPV-18 positive 2015, 2017, 2018, 2019; 09/17/19 colposcopy- CIN1; 09/27/19 LEEP; 09/30/19 Endocervical adenocarcinoma in situ. LEEP margins not clear; 12/13/19 CKC scheduled;
Tivoli
Tivoli's picture

Hi Violet :-)

I am so sorry to read how frightened and alone you feel. We all know what that is like and that is why this forum is such a great place to hang out. Fabulous response from Oonagh! Yes, definitely hang out with all the women here and keep well away from Google.

A lot of us have found that we can develop any number of mysterious symptoms once we have received a cancer diagnosis. I think in part it is our naughty minds playing tricks on us, but also, we are paying so much more attention to our bodies that we begin to notice things that we would have ignored previously.

Even if your MRI results do suggest a different stage, it is still a very curable disease and the only difference might be a slightly different treatment plan. I know it's hard, but try not to frighten yourself. There's a whole army of long-term survivors out here.

Be lucky :-)
Tivoli

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Cervical cancer