Coping with the waiting!

Hi, I was diagnosed with CC on 12th March, after LLEZT treatment biopsy came back. They said it is "glandular" which seems rarer, and maybe 1b2. I had CT scan on 21st and have MRI on 26th - and then they will have proper prognosis and treatment plan.

So far I have been quite positive about it all and also feeling in denial a bit as I feel ok - how can I have cancer - maybe it is a mistake? I don't feel sick other than sore back! But the last few days I have felt so emotional and tired. I am trying not to overthink but am anxious about if it has spread, and what my treatment will be. Am hoping just for surgery and not chemo/radio but someone mentioned with it being glandular, I might need all of it. I have a 10 year old son and am single, so am worrying about managing - I have amazing family and friends so I know I will be ok, but it is still hard to think about, and what to tell my son.

I wrote on here at first (changed my user name) but then haven't felt able to post more, but have been reading the posts which are so helpful. 

Does anyone know how likely it is I will need more than just surgery? And how long before it usually all starts after the scans? Should I do anything to prepare for it, like vitamins, stop drinking wine etc (!!)

thanks

Hi

I had the adenocarcinoma which is glandular and treated the same way. I was 1b1 and had a radical hysterectomy, no node involvement and clear margins so no further treatment. They will know more after your MRI so hopefully a straightforward hysterectomy. You'll then have to wait for histology to make sure it was contained, if not they said to me I'd have had radiotherapy on top. 

You are in the worst position now with all the not knowing and waiting round for tests and so on. I was in an awful place mentally at this stage, it gets better - honestly and you'll be just fine x

thank you both, I am hoping for just surgery, just want to know!!

 

but thank you sharing your experience, glad you are both doing well xx

The nurse mentioned today they staged me preliminary as 1B but I don't know if 1B1 or 1B2.

She told me CT results show no spread to womb, she doesn't have MRI results yet. So am not sure if I would get hysterectomy if it has not spread? Will they just remove the actual cells?

And I assume no Chemo if not spread? I know I have to wait for answers really, it just helps to write it down here I guess!

Hi

Yes, it helps to write it down and I'm sure you'll have plenty of ladies on here to help you through this. I waited two weeks after my MRI for staging as they initially estimated up to 2b. Your estimate sounds as good as it can be under the circumstances. The MRI will show up any potential node involvement, even then they can't be 100% certain there is nothing microscopic, but unlikely. I think you'll have a hysterectomy, possibly laparoscopic which gives you a quicker recovery time. I know it's a major op, but it's really not that bad. I got my histology results two weeks later and returned to work after 6 weeks. I thought that was really good as I don't consider myself as a physically fit person, lol. 

Any questions and please ask, we're here to help and chat to. My journey started on 12th April last year and remember how scared I was xx

I'm in a similar position I've been diagnosed but not staged yet. It's either 1a2 or 1b1 but I won't know til next week. He has told me I need an MRI and a chest xray. He thinks the Lletz removed the cancerous cells already but has said il need keyhole surgery on my lymph nodes in my pelvis to check them? I'm worry about this more than anything but I guess I just have to wait and see. 

With regards to telling your son talk to Macmillan they have some good advice on telling family members and children. 

I'm 31 and due to get married in October and no children....I'm trying to ignore the potential for the hysterectomy till I know for sure it it's needed or not! 

Fingers crossed for us both X 

 

Hi I have just received my smear results saying high grade (severe) dak can't remember how to spell, have been a mess all weekend .have colposcopy booked for a week weds with poss lletz treatment. Can I ask of you had regular smears before your result of cc and if you had any symptoms? X

Thanks Klaw and Helen. I know surgery isn't that bad an outcome considering, but I still feel scared. But feel like I can't admit that as people are saying "oh thats good news"! I know what they mean.

I am lucky I have a child already Klaw, it must be so much more difficult facing this younger. Fingers crossed xx

 

Stacey - I never missed a smear and last one was clear. I am shocked to have cervical cancer as I understood it was slow growing, and with smear they catch the abnormal cells and remove then, hence can't turn into cancer. I assumed I just had pre-cancerous cells and that they were removing them with the LLETZ. Maybe it is the glandual aspect of my diagnosis that made it hard to detect?

Hopefully yours is pre-cancerous and the LLETZ will remove them all - that is more common I think. The LLETZ was ok, the whole thing is emotional I know, completely and you will be scared. But Physically the LLETZ was bearable under local and I felt ok within a few days (physically). Be prepared for may be feeling low and emotional after it - no-one warned me about that. Be kind to yourself and rest x x x

How are you getting on Fifer? I still havent been staged so still dont know what exact treatment il need as they sent my slides to the wrong place which is frustrating! My case will be reviewed on Monday and i have MRI and Xray on Tuesday.

 

 

I am so sorry I missed your question, had log in issues!

How did your MTD go? I have put an update on my stuff in a post in the "cervical cancer - treatment" forum.

Hope you are doing ok xx