Hello

Hello - welcome to the club no one choices to be in. I was diagnosed in July - I’ve had lumpectomy and results but now waiting for oncotype Dx results to determine if I need chemotherapy. I was supposed to get them yesterday however my appointment was cancelled as the results hadn’t come back from the US - gutted - I was hoping to have a plan by now. What’s your story? 

I have the same story as you but I had a bilateral mastectomy.  Still waiting on the USA to let me know if I need chemo or radiation or nothing.  Waiting is the hardest part 

Take care

Jayne

Hi Jayne, I hope you’re recovering well from your surgery. How long have you been waiting for your DX results? I was told they take 10 days so I hope to hear this week if I need chemotherapy- I know I need radiotherapy, hormonal therapy and bone supplements at this point I would like a treatment plan to get started……..it’s the not knowing that’s difficult! So far I’ve had brilliant support from my breast care team in Llanelli. Take care Sian 

Hi Eirian,

I was told that it would take 3 weeks for results  by my surgeon.  It's good to hear you had great support from Llanelli team I'm with Cardiff . Yes I want my treatment plan to start but I have not had even one letter from Velindre cancer hospital yet. I need to start soon whilst in still in patient mode. I'm concerned that this may come back boarder line  Please God they don't ask me  to make the decision to either have Chemo or not  !  I just want to run away at the moment lol crazy 

Jayne 

Hi Jayne, 

I was told that nothing would happen until the DX results come back so everything’s on hold until I get them back. I hope the DX results gives some clarity too. I’ve been doing some research this afternoon- there is a very good article called “Oncotype recurrence score test- what you need to know” if you haven’t read it I recommend a read - so I’m 55 so I need a score under 26 not to have chemotherapy so I’m hoping for that. 
Velindre has a brilliant reputation so your’e in the best place. 
BW Sian 

Hello,

I am an identical twin.

My story:

I am an identical twin and my twin was diagnosed with TNBC about 4/5 months ago and started chemo 4 weeks later - she is now on her second round of 12 weeks with different drugs. She will have mastectomy after.

This prompted me to get checked a few weeks after despite thinking I was ok and they found 3 areas very weakly oestrogen positive. There was a lot of discussion whether I would have chemo first or surgery. I had an oncotype test which was 28/100

which means aggressive and high recurrence (I’m 49). However, we eventually decided on mastectomy with implant (I’m too slim for alternatives) and lymph node biopsy. I had that on 6th Sept and get my results on 22nd Sept. I then start chemo in approximately 4 weeks.

My sister is doing very well - had a port infection so was in hospital for a week and has had a blood transfusion. She has lost her hair and recently her eyelashes. She has a great wig though and looks great. Slightly puffy from the steroids. She has felt nauseous and lacking in energy but has only been sick once. My sister is private whereas I am NHS.

I’m going to mainly use the Facebook page for oestrogen positive breast cancer as I find Facebook easier to use. Good luck and hope treatment it all goes well xxx

ps my oncotype was supposed to take 2 weeks but ended up taking over a month. It was never sent the day it was supposed to because someone was on holiday and there was a mix up. I had my appointmentor my results and they changed it to a phone call to let me know they had only sent them the day before. I have had numerous delays due to staff holidays which has actually been the most stressful thing. Don’t be ill in the school holidays is the lesson learnt

Good luck with your journey and your results on the 22/9 fingers. Is the care different if you go privately. I have private healthcare through work but it was quicker to go through the NHS. Does your sister get different care to yourself??

Hello,

The main difference so far seems to be speed. Everything happened very quickly for my sister - weeks rather than months to start treatment. Also she has her chemo at home. For anything urgent she still goes through NHS - she was in NHS A and E  for hours and hours when her port got infected and then in NHS oncology ward for a week after. She had her blood transfusion at NHS hospital. They’ve arranged for us to have the same surgeon and oncologist as they do both NHS and private. I paid for one private appointment with the oncologist to save me a 5/6 week wait to see him. I’m presuming I get the same drugs for anti sickness etc. I hope so! Hers have been great!

An advantage of NHS is I have a team of Breast care nurses who I can ring and they will phone me back. They are absolutely lovely and really helpful and happy to have a good long chat. My sister doesn’t have an equivalent. She can text the oncologist directly and ring healthcare at home but it’s not the same.

Take care

Hi Eirian. Could you please tell me why you are going to have bone supplements? I have oesteopinia and take supplements already. I wish you well on journey. 

Sue xx

Hi Sue, I have to have hormone therapy( oestrogen blockers) and as a result this may cause osteoporosis so I’ve been told I’ll have a infusion seven 6 months to try and prevent it. 
thanks Sian