Hi Ladies,

it's been a while since I have heard from anyone so I hope you are all doing well? I have been thinking of you all and praying that you all get good news.

Could anyone tell me if they are going to be getting 3 monthly follow up appointments please? My Oncologist said that there is no real benifit to follow up appointments so I won't be getting monitored, I have to wait for symptoms. I haven't been able to sleep with the worry of getting a recurrance and it not being picked up.

Love to you all,

Sue xx

Sue I was just thinking this morning that the forum had been quiet. That sounds like bad advice to me. My oncologist in Hong Kong and my oncologist in London have both said 3 monthly check ups for two years and then annual for another 3 years. However, both did say that the 3 monthly check ups would be the blood tests and that not all doctors believe in these, that they don't give a true picture. I'm doing all treatment privately which may be why they're offering to do them. However, you should certainly be getting annual mammograms and ultrasounds. It seems crazy to me not to offer that, people I know that have been treated for bc on the NHS have definitely had annual check ups for 5 or 6 years after.

xx

Hi Linda,

Sorry I haven't replied to you, I've been feeling pretty low lately. What with no checkups and the registrar telling me I needed more chemo. The oncologist, however, doesn't think oral chemo would be beneficial and I will still have a 20 - 30% chance of a recurrence.

Did your mum have triple negative breast cancer? The after for that is different to other types of breast cancer.

I hope you're keeping well.

Love Sue xx

Hi Claire,

I will be appealing against the decision. I was in shock when I was told no after care.

Keep well

XX

Hi Sue

Yes mum was triple negative too, she finished all treatment in sept for me to be diagnosed in Nov x

Sue are they saying none at all? Not even yearly?

Lindylu how awful. Have you both had the BRCA test?

Mum wasnt offered it as she was 67 with no family history, I have been tested and am waitihg for my results they said up to 12 weeks so am hoping they arrive sooner rather than later as if i am positive i'll be having preventative surgery with recon. My last chemo is Friday, i have a telephone appointment with my oncologist tomorrow to see if thats going to happen what with the coronavirus. I have had a good response to chemo with the lump going so if i dony have the last 1 i think they will do a lumpectomy as urgent they said then mastectomy once i get results if needed. This virus is awful so i would rather not have last 1 tbh so i can get my immune system back on track x

Hi Claire,

I don't know about yearly mammograms as it wasn't mentioned. I was really shocked that I won't be having regular scans or blood tests. I asked how I would know about recurrence and the oncologist said to wait for symptoms. By that time surely it would be too late !!. 

I'm in a terribly state about it as I was sure I would get regular checks

XX