ALL CLEAR??

I'd like to know what the ladies on here mean when they say 'all clear'.  This is usually added at the end of the treatment list, and after their first check-up. Surely it means all clear at that particuar moment in time.  Sorry to sound negative but  doesn't it take years to get what I understand the 'all clear'  to be - meaning you're cured,  and this takes years?

Sorry to sound so negative - please can somebody reply? I'm stage 4 and I've not seen many ladies on here stage 4 that have had the 'all clear'.

Hi,

I am also stage 4 now that my cancer has returned for a third time but prior to this diagnosis I was given the ‘all clear’ based on the fact that my scans had shown no spread and the surgery had given clear margins.
Regardless of how your current situation is referred to all clear, no evidence of disease, remission there is no guarantee you will stay that way, that is not negative it is just realistic but the further you get from your treatment the less chance there is of this happening especially after year 2.

I am staged at 4b and I have been told that I can no longer be cured but will receive palliative care this is because my cancer has spread around my body but stage 4a with surgery such as pelvic exenteration some ladies have received clear margins and are still doing well after 5+ years.

Do you mind me asking have you been staged at 4a or 4b?

Lou

Hi loulouh
I am stage 4a and waiting till I have finished radio before I ask my doctor if I can have the pelvic exenteration I was wandering why I hadn’t been offered this before chemo and radio but have read up on it. I am 34 and feel I’m young enough to at least be given a fighting chance with this operation!

Sharon I completely agree with everything you said too

Laura x

Hello LouLouH,

thanks for your reply. Sometimes I'm angry with the ladies on this site for not replying even though there are plenty  reading the post.  Is it because they're all stage 1 and don't know how to  reply to the stage 4 ladies? that's what I think anyway. Sorry if I seem so angry but I suppose I am.  If I were stage 1 I'd be laughing - not really but do you know what I mean?

I'm not sure if I'm stage A  or B to be honest,  when the surgeon told me, it was such a shock I only remember  him saying stge 4.  Initially I was stage 1B1 following  the scans etc,.  Then I was told I'd need a radical hysterectomy and after talking to the surgeon about this I decided to have my ovaries out as well as I'm post menopause.  

All went well during the surgery and the surgeon visited me on the ward & said they couldn't see anything on the bits they removed and everything looked good but as std practice it would be sent for analysis.  Then Bang! a couple of weeks later & I had appointment to discuss results of the analysis - that's when they told me it had spread to my ovaries and I was elevated to stage 4. They said it was unusual - rare even, for it to do this and they had not expected it.  It hadn't spread to my lymph glands  - I don't even know about the margins - after this I told them I didn't wat to hear the details.  I'm clinging onto the original stage 1B1 diagnosis - trying to blank out the other.

This all came as a shock to me as I went regularly for my smears and in 2010 my smear was clear. In 2011 it wasn't - it weems with this type that because it's situated further up the uterus it's not always detected by the test.  It makes me feel that the whole smear test thing is a waste of time, what's the point if it doesn't detect my type of cc? Why don't they devise one that can reach the cells further up? I'm so, so very disapointed by it all.

Sorry, but I suppose I'm still angry with it all.

 

Sharon

Hi there ,

Firstly I am so sorry that you've had such a rough time and that things haven't turned out for you the way that any of us would hope. I hear your anger and your pain and I wish I had something terribly clever that I could say that would make an iota of difference. All I can do is send my sympathy and heartfelt good wishes.

I am sure that from where you are, those of us who were lucky enough to have had less severe cases look like we're fussing about nothing, but everybody is the centre of their own little universe and a cancer diagnosis is a tough thing to go through, however the cards fall.

I think sometimes people just don't know what to say on a forum like this - they worry about saying the wrong thing or giving bad advice, or just don't have an answer to give. I'm afraid thinking about women with more advanced stage cancer also makes us think about the thing we fear most, so I'm not surprised some of us shy away. We're just ordinary people doing the best we can to get through this. We give the support we can and we all approach it differently. I'm pretty vocal on here but there are times when even I really don't know what to say and I do worry that I might make someone feel bad. I may be too direct sometimes, but I always mean well.

In termsof the original question, when people ask where I am with my cancer I usually say that all the indications are that my treatment has been successful, that I'm in remission and that I'll being monitored for the next few years (never use two words where ten will do, that's me). Day to day I am working on the basis that worrying about it coming back or still lurking somewhere (I had a tricksy old adenocarcinoma, as it sounds like you did) is an unproductive use of energy as there is nothing I can do about it exceopt be vigilant for signs and symptoms.

I'd be lying if I didn't occasionally wonder what I'd do if it came back in a big way - there was a lady on the ward with me who'd had the pelvic exenteration operation and although she was getting on with it all amazingly well, the extent of it did scare the bejeesus out of me. I guess you never know what you can bear until you are faced with the choice.

Finally, I'm pretty sure that someone set up a closed group on FB for women with more advanced stage CC to support each other as you do sometimes want to talk about things that you might not want to raise on this forum.  Maybe someone involved will pop up and let you know some more - I'll take a trawl about and see if I can find some details for you.

Strength and love to you all. xxx

I am so sorry that I am not able to offer advice and have not replied.

I don't have any answers but I completely agree with what Rosehip has said above. I do come on here to find out more and try to give myself some positive vibes and it does scare me enormously when I read the stories by brave ladies at stage 4. I cannot say anything as I do not know. But I do hope that you are able to find answer to your question from someone which will help you.

Good luck Don x

Hi Sharon,

I am sorry that you feel angry but it is natural that you do and finding out that your cancer is now at a more advanced stage is devastating and frightening.
Regardless of anyone’s staging finding out that you have cancer is enormous and any diagnosis is equally as daunting and frightening to the person involved regardless of stage, I know I could not not possibly imagine what it was like for people at stage 4 when I was staged at 2b but my diagnosis seeming huge to me.

Many people use the forum for fact finding and for finding comfort without actually posting comments themselves and often we don’t appreciate our reach, I have been posting since May 2012 regarding my treatment and results and although only several may respond publicly I have received many personal messages and met people who have said how they follow all of my posts.

From my experience prior to my diagnosis of stage 4b often I felt useless and quite guilty when I read stage 4 posts and felt unworthy of being able to answer a post . Although I could feel empathy I really could not understand how it must feel to have advanced cancer even though I have known quite a few people now both off Jo’s and outside until I received this diagnosis I was unable to comprehend it. I did used to try not to read and run I must confess there were occasions where I just couldn’t find words no matter how hard I tried.

Has your consultant discussed a treatment plan with you moving forward? I am happy to share with you my experiences of both surgery and chemo for stage 4, please feel free to private message or post on here.

I am truly sorry that you are having to go through, I do understand and I know how tough this is.

Lou x

Hi Laura,

It could be that your oncologist thinks that the chemo radiotherapy will be sufficient to treat your cancer but you would really need to speak to them about that. I had chemo radiotherapy which shrunk my tumour so that it was contained to just the cervix and this then meant I qualified for pelvic exenteration. Could it be that this is what your oncologist is doing with you?
Have you seen a surgeon? It could be a good time to speak to one or get one lined up for after your chemorad finishes.

If you have a general question the ‘Ask the Expert’ section of this website is excellent and one which I’ve used several times.

If the PE is an option and you have any questions I am happy to answer anything I can and share my experience.

I hope that your chemorad is successful and that you are not suffering too many side effects.

Lou x

Sharon,

Just noticed you are in Northern Ireland and was going to suggest maybe a Jo’s Trust support group, the Belfast group is run by Michelle who is really lovely, you may find it good to meet up with others who have had or are living with a diagnosis … More details here: www.jostrust.org.uk/support/support-groups/Belfast

X

Hi Sharon

I just wanted to tell you that people care, I read your post and im going to be honest I didn't know what to say as I feel embaressed that my cancer was early stage and although im having mopping up treatment, i felt guilt that mine has gone and yours is being a lot more trickier.  I understand your anger as I have felt it, this staging doesnt mean anything at the end of the day we have all have something in common, we have all had our lives turned upside down by this bloody heartless disease.  Everybody reacts to treatment in different ways and just because you are a stage 4 doesnt mean you cannot beat this into submission.  

With Love

Emma 

x

Thanks everyone - all I wanted was for someone to reply to my posts.  I have been feeling down these past few days and when no-one responded to my posts I felt so alone even though I knew people were reading them no-one responded and that made me sad & at the same time.

Thank you all for coming to my rescue! 

Sharon

Wink

Hugs. Have a good weekend x

My mum has just been diagnosed with Stage4b uterine cancer as it has spread to distant lymph nodes, they have said it is not cutable but they are going to give her chemo to control the cancer, has anbidy else been through this?  Not sure what to expect will she die or will this help ?