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Mid diagnosis limbo

Pollydog
Posted by

Hi, I hope this is ok, I am in that limbo between biopsies and diagnosis and feeling in limbo and rather overwhelmed.

Does anyone have any experience of this, am I just being a total wimp and can anyone advise.  Sorry to all those who are further down the track, but I am finding even this bit hard.

I went for my breast clinic appointment last wednesday, had four biopsies, and two sets of different mamagrams, - 3 d and usual 2d.  The consultant said it was suspicious and sinister and advised me when I asked that if the results came back benign that he would get me to have more biopsies as he felt it was 'deeply' suspicious.  He also said to the nurse that he wanted to see me when I came back for the results himself, meaning that I was unable to get a confirmed appointment at the time.

I now feel rather lost and in limbo.  I am a single mum with two teenage boys, one of whom is autistic, and I have decided not to say anything to them or to their father my ex until after I have some more info for them as I know they will have questions and will want reassurance, but in the meantime I just feel scared of what is to come and adrift from the system as there is no follow up appointment in sight as yet.

Apologies for being so pathetic, but I sort of just want to know what may lie ahead so I can start getting on with it and facing it all.

Thanks

Pollydog
latchbrook
Posted by

Hi  and welcome to the online community

Waiting for results is really horrible and you're not being pathetic at all!

Could I suggest that you join the very friendly and active breast cancer group where you can ask questions and get support. To join just click on the link I've created and then choose 'Join this group' on the page that opens. You can then respond to existing posts by clicking on 'Reply' and start your own after selecting 'Start A Discussion'.

Could I ask that when you have a minute you pop something about your journey so far into your profile as it really helps others when answering, or looking for other people with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this just click on your username and then select 'Edit 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.

Wishing you all the best

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

Pollydog
Posted by

Thank you so much Latchbrook,

I have done the profile, not sure if it is ok, but it will do for now.

I have just got my appointment through - this Friday, a bit sooner than I expected - good to be getting on with it, but scared too.

Thank you x

Pollydog
Charlielou
Posted by

Hi I think we can all understand how you feel and you certainly are not pathetic, you are dealing with the unknown and that is scary again I am sure we will all agree. I see you have your appointment through for Friday which is great as you won't be hanging around all weekend. If you are unhappy with the length of time left waiting or are generally unhappy with your treatment speak up and DONT be afraid to ask they as we are here to help. Keep in touch and good luck for Friday xx

With love Lou xx

Pollydog
Posted by

Thank you Charlielou,

Appointment on Friday confirmed what I thought, it is invasive Lobular cancer, apparently a good type to have although the tumours are attached and over 5cm - how did I miss them I'm only a B/C cup! - Anyway also in the lymph glands so we are looking at surgery and chemo following an MRI scan which I have now also had. 

Thank you so much for coming back to me, this isn't easy, part of me wants to run away and hide under the duvet, the more sensible bits are keeping working, trying to get practical things in place for the kids and the household and trying not to feel too much.  A really daunting process though some of the time. I have told my sons, both teens, one of whom is autistic and so far so good, and getting their support network in place is an easy motivator.  Thank you it is good to know you are there.

Still mid diagnosis in a way as until the team have had a chance to meet and discuss the MRI there isn't going to be an appointment for the treatment plan, whilst it is hard to wait, it is also good in a way, I know that at the moment I probably feel as well as I am going to for the next few months so I am going to try hard to get things done in this window, before the battle commences.

Do reply if you get a mo, thank you.

Pollydog

Pollydog
Charlielou
Posted by

Hi  

Sorry for the late reply. I am also sorry to read your diagnosis but you are in the right place to use us as a sounding board. I understand completely how you want to run and hide I just wanted to scream at the top of my voice and cry, yes cry I did but only screamed inwardly. Funnily after that a whole lot of calm came over me. Anyway whilst waiting for your treatment plan try to stay focused and learn to not worry if you cry in public (I broke down in Sainsbury's but no one looked) and take time out for you and your boys.

i will try to find out how to add you as a friend on here so you can write directly to me if you wish to. Remember when you feel down, scared and in need of someone to chat to we are here, don't ever feel alone share how you feel, it helps me that's for sure.

take good care of yourself and your boys

Lou x

With love Lou xx

Charlielou
Posted by

Ps sent a friend request....after I found it took a while x

With love Lou xx