High risk of recurrence

Hi, I’m really sorry to read this. Of course you are worried. Many people on this site have been told that they have a high risk of recurrence. I was told three years ago that I had a higher risk. I had some lymph node involvement, but I had chemo before surgery, and they said that I had a good response, but still the risk was higher. I have a son, but I will be a lot older than you, as he was 19 at the time. Being in the high risk category does not mean that it is a definite. Please remember that. Also, there are some people on this site that had no lymph involvement, but have had a recurrence. So equally, low risk does not necessarily mean never. My breast care nurse said (when I burst into tears) that they never tell someone that they are cured. If people interprete what they are told as that, then that is their interpretation of it. She was quite firm about that. Nevertheless, I suffered mentally from my diagnosis. I was so scared of the world. I reduced my working hours to 2 days a week and very luckily was able to take my private pension for three days. But I was still alive, and for my son I needed to move forward.  At the end of the day, I would say out loud what I was grateful for, and what nice things had happened during the day. It could be as simple as seeing a blue tit or Robin on my bird feeder. But I still experienced feelings of being overwhelmed and would retreat to my bed under my favourite comfort blanket for about an hour. After a cuppa, and an hour to calm my thoughts down, I would be ok again. Three years on, I am much better, and whilst I still have a feeling and fear of uncertainty (I wonder how I am going to feel when I come off Anastrazole in 7 years time) I am returning to things I used to enjoy, and perhaps very usefully, have retreated from, or ceased doing things that have no positive purpose to them. But I still feel overwhelmed from time to time. At this stage, your team is doing everything they can for you. It is a raw and frightening time, but they will know what to do. There are new treatments now that were not around three years ago, and some of them have become game changers in their own way. I think you will get a number of replies to your post, and someone who is younger, and has a young child, will likely say more helpful things than I can. A big hug to you. Xx

What a beautiful and honest reply as it truly reflects my emotional response to being told I had a high risk of recurrence. My breast surgeon told me, if  he informed a woman in her 40’s she probably had 5 years it would be worse than telling me. I had just turned 62. The oncologist ( I reckon in a private conversation with himself) had told him I should make 5 years. 
I have never brought this up with the oncologist, who I am sure would be devastated that this had been repeated. To be fair I worked as a health professional at the hospital and had read research articles and worked out my cancer didn’t have the best features. I am nearly 18 months recurrence free at the moment and hope to prove their forecast wrong. 

Thank you ladies for your replies. I guess statistics are not entirely accurate as there’s no guarantee either way. I just have to hope that the chemotherapy kills off all the cancer cells that may have been missed. And if it does come back it’s treatable as can’t leave 2 kids without their mum 

Hi 

I have a high risk of reoccurrence too , grade 3 stage 3 . I’m on hormone blocking injections , AI and a targeted therapy for 2 years . What type and stage / grade is yours ? 

I’m sorry you’ve had a breast cancer diagnosis especially being pregnant ( congratulations lovely ) and having a little one . My youngest was 3 when I was diagnosed in 2022 and I completely get your fears . You will find a strength you never knew you had especially when your mamma bear instincts come to the fore 

I was terrified for a long time and I’m still scared because I want to be around for my children and I cannot bear the thought of them not having me around

Day to day I have learned to take things at they come as much as possible , one step at a time . I’ve had counselling and I’ve signed up for more ( I highly recommend this ) and Ive signed up for more plus a moving on course that’s run by breast cancer now . Talking to people that understand has helped me no end 

As time passes and you go through your treatment you’ll hopefully learn that a day at a time , then a week at a time is helpful , then of course you will have your beautiful baby too ️ 

We are all here to support you , message me any time if you want to chat or vent or shout 

Huge hug xx

Thank you so much for your reply and kind words. Mine was stage 3 which spread to all my lymph nodes. I had one fairly large tumour and also lots of small pre cancerous cells too. My oncologist said even with all the treatments chance of recurrence is high and if it comes back outside of the breast it’ll be incurable. I’m trying to take each day as it comes but I’m scared I’ll die before my children are grown up. I really hope all this treatment works and it doesn’t come back. Yes I will look into counselling and see if I can join a support group as no one else really understands the fear. 

I hear you , I really do . I worry that my little one wouldn’t remember me and it’s torturous but counselling has really helped . The risks of recurrence are there unfortunately but it has helped me change the way I think about things day to day and coping mechanisms when these thoughts try and take over 

is it hormone positive too ? You might get Abemaciclib that I’m on , its had  really good results 

xx

I’ll look into the counselling as think Macmillan offer something. Yes the oncologist mentioned this treatment in his letter once I have finished chemo and radiotherapy. The doctors are trying to give me as much as they can to help cure it. It’ll be a long road of treatment and tough bur as long as it keeps me alive for years to come I’ll be happy 

Exactly and you’ll do it 

it’s tough but definitely doable xx