Cancer free no evidence of disease

Hi Dynasty and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I know what you mean about wanting your oncologist/consultant to actually say 'you don't have cancer anymore' but I think that sadly, in these days of litigation, they probably feel they can't say those words for fear of being sued if it was to come back. Like you I have to content myself with the words that I have 'no evidence of disease'.

As the online community is divided up into different support groups I'm going to recommend that you join the ovarian cancer group where you can share your feelings and get support from others who have this type of cancer and will understand first hand the worry you feel about recurrence.

If you'd like to join the group just click on the link I've created and then join and post in the same way as you did here. You can also join in with existing conversations by clicking on 'reply'. 

It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hey dynasty

i feel ur pain and anxiety so much . I also have come to the end of the ‘cancer journey ‘ but now on chemo orally . Everyone thinks I’m ok

i get so many side effects 

no one understands 

no one is supportive or has comforting words . Ur just expected to take tablets and be ok

just bcoz ur not having tubes pumping in toxic substances doesn’t mean u r ok

i get it

im suffering with no support n people expecting me to be ok and normal again 

whatever that means ??ever again . Never 

I had aggressive Breast cancer , so not the same as yours , nevertheless the fear the stress the feelings and aftermath of cancer to me feel like they’re the same ? If u want to connect then I’m here to talk and exchange feelings xxx

Hi Dynasty, you're so right in feeling this.  I'm starting to feel it now and my treatment doesn't stop until August.

I'm dreading just the 3 monthly scans for 2 years and no other support.  It's as much the people in the chemo unit as it is the meds themselves.  NED is a "cover all the bases" description for docs to use.  As Latchbrook says in these days of litigation no doc will say "cured"

There's also a medical point to this too, the docs really don't know!   Ok diagnosis firstly, then surgery maybe, chemo and/radiotherapy, scans, meds for side effects. Post treatment scans all clear, the scans don't show anything they say and that's as close as we are going to get it.  And maintenance scans don't include PET scans as they're too costly. 

The truth is there- no final scan by any machine can say for certain there are no cancer cells in your body.  Sadly that's true.  It seems if the cancer has been found in your lymph gland(s) to then obviously the risk of recurrence is higher.  Staging of a person's cancer is based on a number of things and that's one of them.

So for me it's about learning to live with the unknown future. Yes with melanoma I can check my skin for moles but as I had spread to lymph glands it can reappear inside my body.  The uncertainty of my future is what scare me.  Not being able to say  "I've no more cancer so whoopee!" Personally I can never say that. Yes as the months and years pass with no recurrence my odds get more favourable but I'm still alone with the fear.

A mate on my alottments has leukemia of some sort, he's stable for now and he's used to friends and family saying - well it's all over now, you can live your life properly again! There are articles about this on line so I might have a look meanwhile if something isn't there, if support isn't there then we maybe have to organise some ourselves.  That's an idea to ponder upon.  One day at a time. Maybe this needs to be a chat forum on here? Take care Dynasty, I do understand your feelings, keep chatting x

Hi Alottment lover

I saw your reply to Dynasty mentioning that it might be an idea to have a chat forum on here and wondered if the life after cancer group is the sort of thing you mean? It's aimed at people who have finished treatment to discuss things like the physical and emotional after effects of cancer, returning to work, or trying to move on with your life.

x

Hello Latchbrook, yes that's it exactly and you're telling me its on here already I guess!

If it is that's brilliant and we haven't got to ask Macmillan to set it up.

I haven't searched for it on here really as I've not reached that "end of treatment and you're NED" phase yet but will soon so I will be there searching for guidance.

Thank you x

Hi Alottment lover

You don't need to search for the group, just click on the green wording which is a link to it 

I'll be keeping my fingers crossed that you are NED.

x