Hi all

Hi

So sorry to hear what you've been through.  It must have been devastating for you to have your diagnosis and plan changed.  It's clearly been a long time for you. I was diagnosed DCIS & IDC 4 months ago and, for various reasons, things have taken longer than expected.  I'm due to start 3 weeks of radiotherapy next week.  Even my 4 months seems a never ending stressful time

How are you getting on with your radiothreapy?  How many sessions will you be having?  I  hope you're faring well.

As you don't feel you your oncologist isn't too interested in your questions, have you thought about speaking with one of your Breast care team?  Alternatively, how about discussing your questions with someoner from MacMillan?  They will be happy to discuss issues with you.  Another avenue might be talk with the staff where you have your radiotherapy.

I'm sure you will be able to find someone who is able to answer your questions.  If not, then why not get an appt to see your oncologist and go along with your list of questions.  Take someone with you who will giver you moral support, enough to help you stand your ground.  I'm sure you are entitled to be given full explanation to all your queries.

Wishing you well

{{{Hugs}}}

Hi  what your feeling is natural and time will be the best healer.  For me what helped the most was reading people's bios on here and seeing how many years cancer free some people are.  The problem is that most people stop posting when they are done with treatment so you don't get to see how many people stay cancer free.  I asked the breast care nurse who worked with the radiotherapist and oncologist and she said the vast majority of us stay cancer free.

If you have questions keep asking the oncologist until you get the answers you need, don't worry about being a nuisance or annoying it's their job to have these conversations with you.  You can also talk to your surgeon and to your breast care nurse.  It sounds like what you want an answer to is what the chances of the cancer coming back are so keep asking and have them explain what they base their answer on.  That's what I did but fortunately my oncologist was nice and understanding and didn't mind.

Wishing you all the best x

Hi ChocDrop

Thanks for the reply, much appreciated. I think the majority of my questions were answered in that first meeting but it’s that situation where you think of another one or want to hear a bit more again about that question that’s worrying you the most. I’m not sure there’s an opportunity to ask for another appointment now but there is a follow up/sign off I guess for later in the year. I will speak to the Macmillan nurses in between so thank you for that suggestion. 

The radiotherapy is going well so far quite early days and the team are amazing, very reassuring and kind.

I hope all goes well for your treatment and sending you a virtual hug. 

Hi Godwilling

Thank you for the feedback and you’re right you don’t hear that much about the successes which of course there are. 
i think time and distance will be the best help to calm the noise in my head. I’m also going to stop researching for now as that always raises another batch of questions and I can appreciate that you can overthink this. The oncologist said they can never give a 100% cure outlook and perhaps that’s what I’m trying to get to! 

Thank you for the reply and all best wishes to you x

Hi Fauna, my investigations and various operations (vaccum excision, then 3 operations including my mastectomy) took 7  months from referral to final op, on 1st April.  so I think I know where you are coming from. It was a  long period of not knowing what the outcome would be. I didn't need radio or chemo, I'm on letrozole for 5 years. I haven't started to feel like the old me yet and I've actually asked for some counseling.  Each case is so different.... But the fear is the same. So keep coming on this site for the reassurance and love coming from the brave ladies on here. 

Hi Ek55

Thank you for replying and the wait has been one of the harder aspects as every appointment seemed to give a slightly worse outcome!  I’m glad to hear you’ve had your op so that worry is out of the way and I’m also on Letrozole. My tumours were small but very deep and that’s where most of my worry is stemming from. Even if the information sounds reasonably positive (and I know there are other ladies out there going through much worse than me) I can’t stop the very bleak scenarios running through my head. I’m due to have some counselling as well which I’m hoping will help. It’s good to share on here I just wish I could wave a magic wand and make it go away for all of us! 
Hope you continue with a good recovery and take care x

Hi ChocDrop

I took your advice and spoke to the radiology team today and they were great. They could answer my worries about deep microcells and there’s a follow up appointment with them too so thanks again, I hadn’t really thought to chat to them directly and it really helped. 

Hugs x

Bless you.   I'm so pleased you found someone who could answer your questions for you.  That must be one stress of the list, hopefully.  Yes, ther radiology team seem so ready to help and I'm pleased  you found it so. 

So pleased I was able to help you

{{{Hugs}}}

Thanks Fauna. It's hard to fight the dark thoughts and trying to do that is exhausting in itself. Sometimes I managed to say to myself..it's just a thought....  My first diagnosis was a benign papilloma..but it all changed months later to small, but several focuses of invasive ductal and non invasive. Mine were deep, way back too. At first I couldn't get my head around how people's treatment plans varied so much, but there is so much to it. In the end I decided just to be in the hands of the experts and allow myself a good cry and rant when I needed to. You will reach the end of this nightmare, battered and bruised emotionally but it gets better day by day. Accept all support offered. Take care. Stay on this support forum. Lots of hugs and love. 

Hi EK55

Much as I wish none of this were on this journey it’s so comforting to be able to talk to others who know what you are feeling and experiencing. I will keep chatting and I hope you keep accessing all the care and support you can too. We’re all in this together.

Big hug back x