Having my first proper 'wobble!'

My head is all over the place and although I have spent hours googling - I am still no futher forward.
Here is the situation -
First diagnosed, 1cm, gr 2, idc, node neg, er/pr 8/8 (100%) her2 neg. Treatment lumpectomy, rads with boost, tamoxifen.
Cancer recurred under scar found July this year. Saw a specialist - said it was surgical failure. So it that really a recurrence or was it left behind?
Anyway, had bilateral (my choice) DIEP Mid August. I saw an Oncologist prior and and has private CT Scan and appointments. I specifically wanted the oncotype Dx test to help me decided whether to have chemo or not this time and therefore ordered this with the oncologist. He agreed with me to base my decision on the score. Biopsy results showed same stats as last time - but a lot smaller this time (max 3mm).
Forward on 8 weeks and apart from a dressing clinic appointment - I have not heard anything. I wasn’t assigned a BCN and so called my GP to see if they had pathology or Onco result yet. She says she will chase.
Two weeks on (this week gone - am now ten weeks post op) I called GP again. I still haven’t heard anything? What’s going on?
I get a call thurs pm from Onc secretary. I must go in the next day (friday afternoon). I ask secretary if they have my oncodx result back and she said that there was no information about me at all on her screen.
So I see Onc. He tells me that there was a mix up. He assumed I had the result back and had declined further treatment. ? However, it actually turns out that the test wasn’t ordered in error.
He calls the lab and asks them to look at KI-67 profile of my tumour to decide whether chemo is necessary or not. But said he will book me in for chemo next week in case it comes back moderate to high.
I am so upset that I am left in a position that I specifically wanted to avoid. Hence ordering the OnchoDX.
I am also concerned that if my Ki-67 result is high - that I will be nearly 12 weeks out from surgery by the time I start chemo.
Onc is away on holiday now, but said he would get someone to call me hopefully tomorrow if results are back.
I know I am babbling - but am just in tears.
I have been so strong up to now.

shonny just wanting to send you big hugs… why not contact patient liasion service at your hospital and see if they can offer advice… you certainly should have had a BCN, but i know when i had my second diagnosis i didnt get one at first.

if you know the BCNs then you can call and ask to speak to them about all your worries.

much love

Lulu xx

Thank you Lulu,

I’m just so upset the test wasn’t done.
I’m not against having chemo if I needed it - but seems a long way out now. I’ve been a right misery all weekend!! xx

Aw Shonny
What a situation! You are definitely entitled to a wobble. I’m no expert but did have the Oncotype test so understand the rationale, and the need for the result that the test can give.
Some of your symptoms are similar to mine, node neg, er/pr+ (though not as good as yours) and her neg. Mine was bilateral, ended up having 3, largest 2.2cm so quite a bit bigger too, but mine was lobular. I also had quite a number of delays, almost 3 months between initial diagnosis and surgery, because of the complications, then another delay for rads. I even had quite a delay with the Oncotype as I asked the NHS surgeon to proceed with me paying, but he got the wrong end of the stick and though I was asking for the NHS to pay so that was delayed for a month. Came back low recurrence on both sides.
I’m a few months on from all the hassle but I really really know how you feel. I feel I went from delay to screw up and really remember how it felt. I was recommended a double Mx but really didn’t want to go there, and felt that the newer research supported my decision, but it wasn’t a smooth road. They didn’t feel chemo was necessary but my reading of the situation was I was borderline so wanted the Oncotype result to push me in one direction or another. From what you say about your situation I don’t see chemo being necessary but I know how you feel about not having definitive results.

If the docs are saying ‘surgical failure’ then it sounds as if they didn’t get it all first time, so my thoughts are not a recurrence - more left behind.
One thing that did stop me fretting was that BC is usually slow growing and a few weeks ‘shouldn’t’ make too much of a difference.
I did look a wee bit at the Ki-67 but its not something that the NHS here test for.
I’d say your signs are good so try not to go down the dark road. I did discuss with my onc about what would happen if my Onco DX came back high as I was nearly finished rads by the time I got my result, and if you;r having both then chemo is ‘usually’ first, but he did say that it would not have been a problem and some people do have chemo after rads or some time down the line because of specific situations and there is no or little evidence to say that it wouldn’t be worth having.
Take care
S

some people dont have chemo for 10 or 12 weeks if they need to have more surgery etc and i would day you have every right to be having a wobble… i think anybody would in your situation.

xxx

Thanks so much Sheil.
I just feel I have lost ‘faith’. From the first surgeon to this onc. I feel so good now - in terms of health and energy. Better than I have done for years… and my gut tells me to go for Zoladex and Tam. I just wanted the Oncotype test to tell me my gut instinct was correct.
I think the Ki-67 being requested (which is sometimes referred to as the poor man’s Oncotype) is a reaction to the admin error.
And thank you Lulu xx

Poor you Shonny. What a C*CK UP - enough to make anyone have a wobble.Seems like you’ll be needing to be on the case and chase everything up all the time.
Good luck.

It makes me so cross when I read threads about the emotional stress and strain that have been caused by simple admin errors or lack of communication as it could all have easily been avoided and every single one of us on this forum knows how painful the waiting process is. It’s also as though we don’t have family or social lives either that we need to plan things around.

I really would try not to worry about the delay if you do have to have chemo - like Sheil and Lulu have said, I have met people who have had a long wait due to waiting for results or not getting clear margins. Easier said than done, I know! I panicked when the start of mine was delayed by a week - although I still had the primary tumours grumbling away as I had my chemo first.

Hope you have a quick answer this week and that your risk is low.

x

Thanks for your support ladies.
Another nail biting wait by the phone all day and nothing.
I have called both Onc’s secretarys and left messages - but no response.
:frowning: x

Let us know if you get anything today. Like Sandytoes this kind of thing really gets to me.
S

hi, this is my first post on here. just reading up and trying to get as smuch info as i can about everything. haven’t a clue with some of the abbreviations and terminology. could i ask what is a oncotype/onco DX test and what is the ki-67 test?

many thanks

Hi there tommyticklemouse

Firstly, welcome to the discussion forums, I’m sure you’ll find the a great source of information and support.

I just wanted to let you know about our glossary section. Here’s the link to the section which has all the abbrieviations you should need:

share.breastcancercare.org.uk/forum/list-of-useful-words-and-terms-t24991.html

Best wishes.

Louise
Facilitator