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Waiting and scared

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Locket
Waiting and scared

Hi

Ive been diagnosed and told that they think it’s 1b1 but waiting on mri and ct scan to confirm. Am an anxious mess about if it’s spread and will I be ok. I’ve been told by an ex cancer patient that if they thought I was 3/4 they would know already but I just feel hopeless. 

I’m now starting to get lower back pain and feel exhausted. I have 2 kids and I’m hoping they offer hysterectomy and just get it out! 

Is appreciate any advise or guidance from anyone. 

I’m terrified 

Sbray

Hey Sweetie 

i was you on the 28th March when I was diagnosed.

I totally understand the fear and all the unknown factors that you have to deal with. I have 4 young children and was absolutely terrified too.

i’ve just finish week 2 of a 6 week Chemoradiation plan and it’s very doable. 

Give yourself time to feel all the emotions that you’re experiencing, the fear, the pain and the joy when you look at your children. It will get easier when you can process what’s going On just go easy on yourself 

 

xx

Locket

Thanks for your reply.

what stage was you diagnosed with? I’ve been told initially 1b1 but just feel like it will be more. 

We are moving house right now so am exhausted with all that but husband is being amazing  

Sbray

I am a 2b girl the cancer had just started to grow into the Parametrium but a small tumour at 2.3cm. I had an MRI for staging and then a PET CT to make sure that I had no Lymph nodes involved and no cancer anywhere else. I found the waiting for the PET CT results the most emotional but that was only my experience yours could be completely different. 

its all overwhelming at the minute with all the tests and staging and it feels like it takes ages when all you want to do is crack on and start the treatment. 

This forum is a brilliant support and there is always someone willing to chat about stuff that we can’t or don’t want to discuss with our nearest and dearest.

 

xx

 

 

Lotty9000

Hey! 

I was diagnosed on 8th May. I have a Villoglandular adenocarcinoma which is one consultant thinks is a 1A but one consultant thinks it a 2B. I’ve just had MRI and CT this week so waiting on confirmation of staging. My case is being discussed at MDT this Wednesday coming. 

I have cried, been angry and upset and accepted it and then gone back to the beginning again. I totally get how you feel. It’s just horrid. I had absolutely no symptoms and this has been diagnosed following an abnormal routine smear (my only ever abnormal smear) and a colposcopy. Following my letter for my abnormal smear I developed pelvic pain,ovary pain all sorts of symptoms. I think the mind can be a crazy thing.

The waiting has been THE worst. I have 2 children so I’ve told the docs that they can have whatever they like to get rid of it and prevent recurrence.

This forum is great for support and others who have been through it or at the same place as you.

Good luck 

C x

 

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

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandula adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

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

13th June LLETZ with top hat procedure 

Awaiting results and MDT decision for either simple or radical hysterectomy 

Locket

Thanks for reply.

i have 2 kids also and I’ve said exact same thing. Take it all out I don’t care.

I only found out Wednesday but have been feeling rotten since. Been waking at 4am wind going into over drive.

Has holiday booked in July which we are having to postpone or cancel. 

Just a whirlwind of emotions 

x

Lotty9000

I know! It’s awful eh?! It’s like a nightmare. I feel in limbo until I know a plan and that I might be ok? 

Somedays are more positive than others.

Take care

C x

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

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandula adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

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

13th June LLETZ with top hat procedure 

Awaiting results and MDT decision for either simple or radical hysterectomy 

Locket

Update 

went for my ct scan today and they said they had room to do my MRI as well which was good. Scans wasn’t as bad as expected but was surreal. The MRI I expected to be like a coffin! But both ends are actually open. It made me realise how serious my situation is and I could have cried when I come out. 

I get my results back Thursday so another waiting game. Xx

Lotty9000

I know, it really does eh?! 

At least on Thursday you’ll know what you’re dealing with and have a plan. Good luck, I’ll be thinking of you xxx

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

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandula adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

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

13th June LLETZ with top hat procedure 

Awaiting results and MDT decision for either simple or radical hysterectomy 

Dee78

I was diagnosed on the 13th May and have been a wreck since.  Physically I feel strong but mentally I am really struggling.  I have no idea of stage yet but have my CT scan on Wednesday, petrified it is everywhere.  Cry every time I look at my 2 kids, worried I won’t be around to see them grow up.

I have had no symptoms at all, although today I am having brown discharge when I wipe (this has really frightened me!)

I have been on google since I found out which hasn’t helped at all.

Feel lost, alone and scared x

1st April - colposcopy and lletz

13 May - told cc

29 May - CT and MRI

12 June - staged 1a2, need another lletz to confirm treatment

24 June - lletz booked

Lotty9000

Dee78 you are definitely not alone.

It’s really frightening though, I still don’t know exact staging yet, my mind is always racing away with me. 

I havent had any symptoms either, it was a routine smear that resulted in my referral and subsequent diagnosis. When I think back I’d had a brown discharge at one point (I’m not totally sure when) butit cleared up. I’ve had bleeding and now a yellow/brown discharge since my LLETZ but i think that’s normal. 

The thing that I take from this forum is that cervical cancer is curable,there are many women in here that have been through treatment and have survived to tell their stories. 

I’m still scared but this forum has been brilland so many supportive people.

C x

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

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandula adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

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

13th June LLETZ with top hat procedure 

Awaiting results and MDT decision for either simple or radical hysterectomy 

MRuss

Hi,

I was diagnosed on Thursday 1B1 - totally shocked and devastated. 

I also had no symptoms and full smear history so just can’t understand. When you read up in these things it says 10-15 years to grow to cancer yet I had a clear smear 3 years ago.

I am determined to be strong but right now I am broken. Reading some of these posts is making me feel less alone - thank you x

Lotty9000

Hi MRuss

I was the same,no symptoms, never missed a smear! Also clear smear 3 years ago so I totally understand.

You are definitely not alone.

 

C x

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

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandula adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

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

13th June LLETZ with top hat procedure 

Awaiting results and MDT decision for either simple or radical hysterectomy 

Locket

This forum is great for feeling less alone. 

Are you officially diagnosed from scans? I’ve been told they ‘think’ I’m 1b1 but still waiting for official results. 

Have they told you your treatment? 

X

MRuss

Diagnosed from biopsy. Awaiting MRI for lymph node checks - is what I think I understood in the haze!

Treatment will be either Hysterectomy or Radio and Chemotherapy - dependant on MRI.

It is so scary and the days feel like weeks.

x

Locket

Yes that sounds like me. Diagnosed from biopsy but mri and ct to confirm. It’s horrible isn’t it this waiting. I feel like I’m in a dream. I’m still bleeding from my LEEP. Also fighting infection! 

 

Helen7
Helen7's picture

Aww, Locket and the other ladies. I am you, but 12 months down the line.

To start with they didnt know my staging, but estimated no worse than 2b. I was a complete mess going through all the scanning phase and didnt think Id see Christmas, I am a massive worrier. After all the prodding and poking I bled a fair bit to add to my worry. Your GP can help with this and perscribe meds if anxiety is too much. 

Finally got my staging of 1b and was relieved. I had a radical Laproscopic hysterectomy 12 months ago tomorrow and have had 4 monthly follow ups since. Last week had my yearly and have been put down to 6 monthly.

This time next year you will be me, the waiting for staging is awful and I had pains all over - abdomen, hip and back. Plus the bleeding was continual which it wasnt previously. 

I know its easy for me to sit here and say you'll be fine, but you will be. Hope this message has helped and wish you all the very best xxx

Locket

Thanks so much for your message. It gives us hope.

how did you find hysterectomy? 

Helen7
Helen7's picture

Hi Locket

It wasnt too bad, just one night in hospital. Cant really say I was in any pain, one or two little niggles, but seems to vary person to person. Basically, the first 7 days can be written off as you need to rest. If you end up going down the hysterectomy route I can definitely tell you more about it. Good luck for Thursday x

Lotty9000

Locket, when do you get your results? 

Everything crossed for you xx

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

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandula adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

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

13th June LLETZ with top hat procedure 

Awaiting results and MDT decision for either simple or radical hysterectomy 

Locket

Results on Thursday.

The CNS rang today to check on me after weekend. She said CT scan was back and all other organs were clear and contained to cervix. She did say my lymph nodes looked inflamed but she couldn’t be sure if that was infection, which could make sense as I have had infection. But still a worry. I’m nearly there, just couple days to go 

Lotty9000

Good news! Yes and if you’ve had treatment to your cervix the lymph nodes may “flash up” on the MRI as they’re doing there job and having an appropriate inflammatory response. I was told I had to wait at least 3 weeks between lletz and MRI for this reason. That’s great it’s confined.

ive had my CT and MRI last week,get results and plan tomorrow....eeek!

Massive good luck got Thursday,I’ll be thinking of you xxx

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

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandula adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

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

13th June LLETZ with top hat procedure 

Awaiting results and MDT decision for either simple or radical hysterectomy 

Locket

Hi lotty 

Did you get your results? 

Whats treatment plan?

how do you feel 

x

Dee78

Just had my CT and MRI today, do the waiting begins.  Feel very overwhelmed.

To too it off I am now getting short sharp pains in my lower abdomen on the left hand side.  So frightened x

1st April - colposcopy and lletz

13 May - told cc

29 May - CT and MRI

12 June - staged 1a2, need another lletz to confirm treatment

24 June - lletz booked

Locket

I experienced pains to and I thought omg it must be everywhere. But they’ve died down now, I did have infection thought and prescribed antibiotics. I’ve heard on this forum that it’s quite common and every pain we now feel until staging will feel like somethings wrong. Try not to worry. 

I get my results back today finally. Feel I’ve waited that long that I don’t even want to know anymore just want it to go back to normal. But glad I will finally know what’s going on and can get going with treatment.

when do you get results? X

Lotty9000

How did you get on?

I got my results yesterday xx

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

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandula adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

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

13th June LLETZ with top hat procedure 

Awaiting results and MDT decision for either simple or radical hysterectomy 

Sbray

How did you get on lotty? 

Lotty9000

So I’m a stage 1B because they could visibly see a growth on my cervix. However the amount of malignancy in the growth was equivalent of a 1A stage. Although the rest of the growth was mainly CIN3 and CGIN. No clear margins in the endocervical section.  MRI clear.

Plan from MDT is repeat LLETZ, if clear margins I can have a simple hysterectomy for belts and braces precaution as it’s an adenocarcinoma. If not clear margins I’ll need a radical hysterectomy. 

I think the best of the shit cancer hand? I’m still a little nervous and stressed but overall a positive....I think.

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

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandula adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

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

13th June LLETZ with top hat procedure 

Awaiting results and MDT decision for either simple or radical hysterectomy 

Locket

Hi, 

Been an emotional 24 hours. Went for results and was told there had been some spread to lymph nodes and I need chemorads. They think this is best option. My stage has also changed from 1b1 but I’m trying to not concentrate on that. I’ve been told the tumour in cervix is small. So I’m scared and confused all rolled into one. 

I know this is best treatment for me. But the thought of having chemorads is scary and there is a part of me that thinks OMG what if they can’t cure it. 

Meeting on Monday with oncologist who will talk me through treatment. 

Xx

Lotty9000

I’m sorry to hear this! 

But there are many on here who have had chemorads and been NED at follow up appointments. 

You’ve got this! I have no doubt.

Thinking of you xxxx

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

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandula adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

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

13th June LLETZ with top hat procedure 

Awaiting results and MDT decision for either simple or radical hysterectomy 

Locket

Update - got my oncologist appointment tomorrow to discuss treatment plan. I just want to get moving now and do what needs doing. Praying this can be sorted. 

Will update tomorrow with what’s been said as I found reading other people’s experiences helps me so much. 

X

Lotty9000

Good luck! 

Will be thinking of you xxx

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

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandula adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

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

13th June LLETZ with top hat procedure 

Awaiting results and MDT decision for either simple or radical hysterectomy 

Locket

So had my first oncologist appointment yesterday and she spoke me through treatment. I have pet scan weds and radio meeting on Friday. All happening quickly which I’m happy about but still quite scary at the same time. 

Still cant believe I’m here and having to go through this. 

I need hope but right now I feel scared of what will be.

My treatment should start within couple of  weeks which I’m happy about just want to kill this thing!

x

Lotty9000

Locket

Good news everything is starting to move quickly for you. 

Hope everything goes well on Wednesday and Friday,will be thinking of you!

You’ve got this.....kick cancers arse! That’s my new mantra.

xxxx

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

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandula adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

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

13th June LLETZ with top hat procedure 

Awaiting results and MDT decision for either simple or radical hysterectomy 

More Information

Cervical cancer