Feeling lost scared and alone

Dear Gemmb , 

Firstly I am terribly sorry to hear of your health concerns and understand how you feel with worry anxiety and all the other emotion attached to your scare. 

I can tell you nothing to make you feel better , sometimes it helps just to talk and be comforted I had lymphoma hiding decease 10 years ago and went through 6 months of chemo (all clear) my ex also had a radical hysterectomy 2 years ago which there was a waiting period of around 6 weeks over Xmas time into late January,  so I know how you feel that is when I signed up to ma Macmillan support and speaking with the support team there really helped me , I always felt it was more worrying going through it when your own emotions are out of your control,  you have control of your emotions gemm and you are going to have the operation soon I have every faith just keep fighting on girl!! Breathe it all in you are stronger than you realise and so brave for what you have been through so far , get the positive thoughts in your mind.... 

I highly recommend to speak to the Macmillan support team , also another tip I'd to start keeping a diary of how you feel on a daily basis,  you are going to have bad days , we unfortunately have to accept them,  we have good days abd must embrace that feeling.. if you need to chat I am happy to talk,  listen,  

Adam x

Thank u and glad to hear u are well now I’m not normally an emotional person have been fine through it all I just feel that lately every step forward comes with 2 steps back I think I’ve just let it build up and build up then yesterday I just lost it. I think your right with keeping a diary will be a great idea as I’m not normally one to show my feelings where if I write then down at least I’m getting them out and not bottling it up thanks for that Adam x

Hi Gemm and welcome to the group.

I can appreciate it must be making you very anxious having your surgery cancelled and testing positive for covid-it all must be very distressing for you.

I hope you won’t mind be asking you some questions just so I can be clear on what is going on for you. 

Are you able to confirm for me, just that I can be sure of everything, that you were given a diagnosis of cervical cancer after your biopsy? And then you mention you had scans? Can you tell me which scans you had? I was a little confused by your use of the terms “moderate” and “severe” as these are not terms associated with cancer and I haven’t heard them used to describe cervical cancer before. Normally you would be told what stage the cancer is after having the scans.

i am assuming that since you were offered a radical hysterectomy and lymph node removal that you were stage 1. Was it a tumour that was 19mm in size? 

How do the doctors know it is now 26mm in size? The only way to tell would be by further scans, unless there was some discrepancy in the MDT meeting with your results. So it may not have grown, but been incorrectly reported initially.

First of all, can I say that 26mm is not huge, and depending on the location, may not change the stage of the cancer. I have known ladies with tumours of 7cm, 10 cm who have been successful treated for the disease. If the staging changes however, then the treatment plan could change and potentially mean that a radical hysterectomy may no longer be possible. Did you have any lymph node involvement confirmed by any scan? 

You say you presume your date of 23rd will be cancelled again. Is that because of your covid status or something else?

I’m so sorry that I seem to be firing questions at you, but without being a little more sure about your situation, it is difficult to give you advice. 

It’s hard not being able to contact your nurse-hopefully they will give you a call back to discuss things further, and this would be a chance for you to ask more questions. Covid still seems to be getting in the way of everything, and seeing staff face to face which can make things seem even harder. 

There are lots of lovely ladies in the group who have been where you are now, and will understand your confusion and anxiety so please do keep posting with us and asking questions. 

You are right at the start of the process of being diagnosed and getting a treatment plan arranged, which is very hard for everyone, but please try and not overthink everything right now until you know some more about the way ahead. xx

Hi hopefully I answer your questions but I’m unsure on what everything means yes after my biopsy I was diagnosed with cervical cancer then had a ct and mri scan and got a diagnosis that read showing moderate dyskaryosis squamous cell cancer 1b1 size 19mm then had further examination and another ct and mri then had another letter saying after mismatch mdt meeting and a review of the cytology the referral has changed from moderate to severe dyskaryosis SCC 1b2 size 26mm sorry I have basically just copied the letters as i don’t understand the technical terms thank u for your support they have contacted me and cancelled my pre assessment again just to still testing positive I am now waiting for the surgeon to ring me in the morning. Im just presuming it will cancelled for the 23rd as my pre assessment is now the 22nd and the nurse has said she believes it’s to close to surgery date x

Hi Gemm

Thank you so much for getting back to me. So, it seems you have 2 things going on here:

1. You do have cervical cancer but it’s early stage, so should be able to be treated by having a radical Hysterectomy.This is staged at 1b2 now after the latest MDT meeting. There are several different types of cervical cancer, and the type you have-squamous cell-is the most common type. 

2. You also have abnormal cells which are not cancer. This is the “dyskariosis”, and it can be mild, moderate or severe. Sometimes there can be a mismatch in these results. But it doesn’t mean your cancer is severe, it refers to the level of abnormality in the pre cancerous cells. These would al be removed if you are having a radical hysterectomy. 

i know you are really worried, but stage 1 cancer is not advanced cancer, it’s the earliest stage of cancer and the treatment is normally very successful. 

Your nurse might well be correct in saying your pre op assessment is too close to your surgery date, so your operation might need to be pushed back. The pre op assessment is nothing to worry about-it’s just some tests-blood pressure, height and weight, covid and MRSA check and a heart check. This will just check you are for to go ahead with the surgery, and is done by the nurses.

I really hope I have managed to reassure you just a little bit and that you can relax a bit now. If you’re not sure about what is involved in a radical  hysterectomy, make sure the surgeon tells you. There are several different types of hysterectomy, and the radical hysterectomy is the one done for cervical cancer. Make sure you know whether it would be done by opening you up on your tummy (an open abdominal) or laparoscopic (keyhole surgery with small holes rather than a cut). 

Research shows that the open abdominal method is more successful in preventing the cancer coming back.

Let us know how you get on with the surgeon calling, and try and keep yourself busy and distracted. Waiting is always horrible, but it sounds like things won’t be long for you now. xx

So sorry to hear about what your going through. I wish I could give you some advice. All I can say is the woman in this group are all so supportive and I appreciate how lonely these times can be but we're all here for you

Thank u for taking the time to reply just knowing there is people out there who can listen and talk to is a great help x

Yes that has really reassured me thank you so much I don’t really understand all the medical terms so just presumed the worse but this as really put my mind at ease they have said they are doing it through open surgery vertically. Thank u so much I feel a lot less stressed now, now just to wait to see if I have to wait until I’ve been Covid free for 7 weeks before they’ll operate x

I would feel a bit hypocritical telling you not to worry as I'm also very worried about things. But from what I've read and heard from these other woman is that it's going to be ok. We will get through things. Everything your feeling right now is completely understandable and normal given the circumstances. 

Hi Gemm

I’m glad to be able to help a bit. I didn’t know anything medical until I was diagnosed with cancer, but I’ve learned a lot since then! Often the doctors forget we’re not medical professionals and don’t understand the jargon-don’t be afraid to ask them to go over things and explain it in a more straightforward way if you’re not sure about anything. 

Open surgery has a longer recovery than laparoscopic surgery but is safer in the long term, so it’s good news you’ll be having that. 

They don’t operate at later stages, so it does mean you can be confident you have stage 1 cancer, and things are not as bad as you might have imagined.  Hopefully it will all be over with soon for you, and feel free to join in any of th chat here or ask questions. xx