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Feeling scared

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Locket
Feeling scared

I suppose I’m just feeling vulnerable. I still can’t believe I’m going through this. I’ve now finished my treatment and am now waiting for  MRI to confirm everything. I’m just terrified it’s not all gone and I’m going to leave my babies. I think the coronation street storyline is hitting a open wound. 

If anyone is out there that can offer me some inspiration I could really do with some right now. My tumour on cervix is stage 1b but because it had spread to para aortic lymph node im classed as stage 3. Just the words stage 3 scare the living day lights out of me. Is there any other lymph node survivors out there?.... 

ive been trying to stay positive but it’s all getting on top of me again 

Petesdragon
Petesdragon's picture

Best to avoid Coronation Street for now! All of these fears are real for any cancer survivor. Some survive and some don't and although mortality rises overall with stage it's a lot more random than that. A tiny percent of stage 1 succumb to their disease and yet a small percent of stage 4s survive. I had lymph node involvement and have survived 22 years so it's certainly doable. The trick is to focus on enjoying your life, continue planning the future and just believe in yourself. I believe in you! You have this under control, the treatment is over, go out and live. I have a 50:50 chance this second time around and I have loads of holidays and other trips booked up. I am making the assumption the coin will land the right side. Book up something nice for yourself and you will get there.

Karen x 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Dee78

Hi Locket

I just wanted to send virtual hugs.  I understand the fear and deep down I don’t think that fear will ever leave.  There will always be a wee niggle in the back of my head anyway!  

Coronation Street definitely hit home last night.  I finally had my radical hysterectomy and waiting final pathology so not 100% sure if I need further treatment or not.   

Good luck for your MRI when it comes, I’m sure you have smashed it!  Stay strong xx

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 - 2nd LLETZ, awaiting confirmation of treatment.  Restaged 1b1.

3 Sept - laparoscopic modified radical hysterectomy(retained1 ovary)

19 Sept - pathology confirmed no lymph node involvement and NED, no further treatment required.  3 month follow ups...

Locket

Funny thing is I don’t even watch coronation st! It’s just in the news, online etc. It seems along with the jada goofy documentary it’s everywhere. 

I’m just having a bad few days. I think if I’d been told it was responding or just something I would feel ok. But the fact I don’t now anything. The consultant said he was really happy with how things had gone but nothing more 

thanks for your replies ladies x

Lotty9000

Hi Locket

Thinking if you! It does seem to be everywhere just now as you say with the Jade Goody documentary which I struggled to watch. I can’t watch Corrie I have to say,it’s just too much. 

I cant help with the lymph node involvement, I’ve been on the luckier side of this shitstorm(if you know what I mean) but I am sending you lots of positive vibes your way.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:-)

Philleepa

Coronation Street is hard watching at the moment and I'm really glad I fell asleep for most of last nights episodes (I watch it on iplayer). I thought I'd be brave enough to watch it but the bits I did see made me realise that I'm not. 

I have been watching it with interest and been really impressed at how the things the character has been saying has been very true of how I feel but I'm really sad that they've not had a happy outcome. I know the actress is leaving but I wish they would have let her go out on a happier note - people do survive cancer and I think that would've been a lovely message to give out to people who are going through the same thing.

I was diagnosed at stage 4a nearly 4 years ago. I was discharged from hospital just over a year ago. I have been living life pretty normally since I received my first scan results in May 2016. 

There is hope and I think we need more positive stories to show this.

Locket

Thank you, you were a big help to me before treatment started. 

I agree the storyline could have been more positive. I think along with the jade goody documentary it’s all been doom and gloom around cervical cancer. But I know from speaking to real ladies on here people survive it every day. I just hope I am one of them. 

We are going in holiday in October which can’t come quick enough. Trying to stay positive, it’s just these damn lymph nodes that are making me worried! 

 

X

Petesdragon
Petesdragon's picture

They have had cancer stories in Coronation Street where the character survives such as Sally. So I do think they need to show both sides of the story. As a person who has had a total pelvic exenteration, I would have loved them to have run the story as one of "salvage treatment" . How wonderful it would be to have a character with a colostomy and urostomy! Or alternatively a character making a decision about a clinical trial! Cancer isn't just about life and death there is a whole journey in there and so many difficult decisions.

One of our members CD84 (Cara) had a.similar story to Sinead and they did a feature about her in The Sun. She passed away a few weeks ago. I was very close to  Cara and the story hits me hard from that point of view.

So although I have deviated a bit from Locket, my overall point is that even with recurrences (or in.my case a.second promary) there can still be curative options out there. Recurrence doesn't automatically mean it's the end of the road.

Karen x 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

emmz13

Hey locket, 

You are not alone lovely. I understand how you feel, I have a 4 day hospital stay for brachy and then that’s it’s till February for my first  scan. I had an MRI on the 6th and I just wanted someone to look at it and tell me something, anything just so I had some idea. I’ve had practically no side effects and my paranoid brain keeps thinking maybe that’s a sign it didn’t work. 

Corrie has been too hard for me, it came on the other night and my hubby had to turn over.

I know that staging makes a difference and psychologically when mine was changed from 1b to 2b it hit me hard but then there are a lot of people who have surgery and find cancerous lymph nodes whose stage remains unchanged so maybe actually there are a lot more who would be technically classed later stages that respond well and are cured, it might not be true but it keeps my brain happy. 

I have a daily battle to stay positive, some days are harder than others. I hope very much you get reassuring news soon.

My children are 4 and 7 and it terrifies me to think of leaving them all I guess we can do in the mean time is cherish every second and make memories they will cherish forever. I don’t know what my future holds but cancer has already taken too much from me and I will not let it take anything else. 

Massive hugs lovely, I hope that you find some peace and less fear. My hospital offer holistic therapies that focus on the anxiety and uncertainty of the future via the Macmillan nurses maybe yours do too. 

Love Emma xxxxx

May 19 odd symptoms

03/06/19 doctors appt internal exam, said everything looked fine, did smear. 

10/06/19 urgent colposcopy due to HPV positive and severe changes. 

21/06/19 consultant sees 2cm tumour takes punch biopsies. She’s pretty sure it’s cc.

24/06/19 cancer confirmed, grade 3 preliminary staging 1b.

03/07/19 X-ray. 08/07/19 MRI and PET scan. 10/07/19 MDT meeting

15/07/19 restaged 2b parametrial invasion no lymph node involvement.

16/07/19 treatment 5 1/2 weeks chemorads

18/07/19 planning MRI 26/07/19 preassessment Chemo

05/08/19 chemorads start

11/09/19 chemorads end!!!! 

16/09/19 Brachy

19/09/19 DONE!!!! 

Ren

Hi! I was stage 2b until, during my hysterectomy, they discovered that the cancer had spread to my lymphnodes bumping me up to 3b. 

What I didn’t realise was that the scan I had just after my operation, and before I started treatment, already showed that they had cleared the cancer. They continued with the radio and chemo as a precaution - they didn’t tell me this until at least 6 months later, as I too had a panic about how could they be so sure and why were they not checking me more regularly 

Point is I’m a 3b survivor and the doctors were more certain of it before I realised they were. I do have some issues with lymphodema which set in between my 2-3 year all clear marks so currently under review for that - it’s manageable and I’m still here so I’ll take it. If you find any discomfort in your legs, get it checked out as they can provide you with compression garments and suggestions on how to manage it. 

Lauren

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Moving forward from a cancer diagnosis